Parenting a Child with Down Syndrome

Highlights Free iPad Apps

2012-01-21T11:30:00.000-08:00

I recently purchased the iPad 2 for my youngest two kids who have Down Syndrome. They are ages 11 and 10 years. One of the first apps we downloaded was Highlights for Children Hidden Pictures Lite.

As you probably guessed, this app is just like the hidden picture pages many of us spent hours searching as a child. What makes the app much cooler, is that the hidden pictures light up in colors when you find them and touch them.

The pictures you are looking for are listed at the top of the page. The searchable page is below. When the hidden picture lights up at the bottom, it also lights up at the top to show that it has been located, or check it off your list.

After realizing that the pictures could be found by tapping on them, I began to wonder if my kids would simply tap repeatedly all over the screen to see what lit up rather than working to find the pictures. They did not. They patiently searched and only tapped when they thought they had found a hidden object.

The picture is 2 pages wide on the iPad screen. This left my kids scrolling back and forth between 2 pages as they were searching. I worried that this might be confusing to them, but it wasn't. They mastered the scrolling of the pages within seconds.

When you consider many of the Highlights iPad Apps are free, you soon realize those are more economical than the magazines our parents bought for us ages ago. You just can't beat free. The Highlights apps are not only free they are usually highly rated by parents. Here are some of the other free Highlights iPad apps offered:

Highlights Hidden Pictures Countdown Duo
Highlights Memory Mix Up Duo
Highlights Buzz Blast Duo

These apps are designated for iPhone, but guess what, if you download them on an iPad they work!

Highlights My First Hidden Pictures
Highlights Hidden Pictures Lite
Highlights Silly Shapes Lite

If you are on your iPad, simply go to the app store and search for the titles above. If you are on a PC you can follow the links to view demos of each app through iTunes.

iPad for Kids with Down Syndrome

2012-01-20T11:29:00.000-08:00

I don't know if the general public is aware of this, but there is a lot of marketing hype targeted at children with special needs. When my children were younger, I bought into much of it hoping that this or that vitamin, software, oral therapy tool, or special shoe would make a difference. Over the years, I have learned that a lot of it is just hype.

I was very skeptical when the iPad began promoting their apps for "special needs" kids. One advertisement went so far as to say it encouraged speech in children with autism. Years of research, government grants and countless hours of therapy have been invested in this goal, helping children improve speech. I am very doubtful that one electronic device, is going to make miracles happen. Add to that the fact that many special needs kids do better if they are not exposed to electronic devices. Too much tv, computer, etc often increases negative behaviors.

Knowing all that, I've been hesitant to try it, but this week I broke down and bought an iPad 2. I'm curious about how they work and I think the touch screen is fun. I am going to let the boys play with it for half an hour each day (everything in moderation) and see how they enjoy it. I've been pleasantly surprised at how many free apps are available. I was afraid I'd have to spend and arm and a leg for every app. Today is the first day we've used it and right away I found a free "Highlights for Children" app where they locate hidden pictures.

I'll be posting in the months ahead about the different apps we try and how we like them.

1/19/12 - What We Did in School Today

2012-01-19T16:26:00.000-08:00

We began the day by drawing pictures of different objects around the room. My budding little artists enjoyed this. After they drew pictures, they colored them. Then they wrote the word for each object under it (apple, tv, etc.).

Phonics
Adrian did the letter "y" from Get Set for the Code. Get Set for the Code is a phonics program where kids practice letter sounds and identifying objects that begin and end with those sounds.Blake worked on ending letter blends "ft" and "lt" from Explode the Code. Explode the Code is the next set of phonics books in the series.

Blake also did some worksheets from Reading Eggs. They are downloadable for free with membership. He also did a Reading Eggs lesson online.

Adrian did a Reading Eggs lesson online and he worked on his handwriting. We use the Handwriting Without Tears worksheets.

Wrapping It Up
We finished up the day just talking playing word games, "Can you think of a red fruit?" Blake got strawberry right away. He must like those. Adrian likes cartoon characters. "What cartoon character is yellow?" Spongebob, of course! These "word games" make a big difference in their ability communicate verbally. I think it helps them because they are practicing remembering objects and the words for those objects.

Homeschool Adventures 1/13/12

2012-01-13T17:36:00.000-08:00

We finally started doing school work after a long Christmas break. The truth is my oldest son was home from grad school and the weather was beautiful. Almost unheard of for January, so we had a little trouble getting back into the swing of things. Today, we worked though.

Each of my boys did a lesson in Reading Eggs. Have you heard of Reading Eggs? It's the easiest online program to teach a child to read and is by far my favorite online program. As your child progresses through the lessons they become more difficult.

When I started homeschooling, we used "Explode the Code" worksheets exclusively for reading. Then I found Reading Eggs! It has helped so much, I can't begin to tell you how much I love it! I don't stress anymore wondering if my boys are learning. I can see their progress each day and they have so much fun! Plus, the online lessons make it easier for this homschooling mom. Check it out, there is a 2 week free trial, so you can see for yourself.

Adrian mastered the words "and" and "the." He is on the second level, or lessons 11-20. Each level is comprised of 10 lessons and there are 12 levels. The student must pass a quiz at the end before moving on.

Blake studied "g" words that sound like "j," such as "gem," "giant," "gym," "giraffe," and "rage," on level 92. I was worried that it would be confusing, but he mastered them all. Phonics rules (sounding out words) is a relative strength for him.

Reading Comprehension
Each day reading comprehension is something we are focusing on because making sense of the words seems to be more difficult than simply sounding them out. We spend a lot of time doing vocabulary, or defining and talking about the meaning of words, during reading time.

Today, in addition to learning to sound out "gem," "giant," "gym," "giraffe," and "rage," we talked about what those words mean. Reading progress and learning new words makes such an amazing difference in our daily lives. Read with your kids each day, it makes a difference!

Math and Addition
In math we worked on addition. I wrote addition problems on a sheet of paper (ex: 1 + 4, 2 +5, 4+6, etc) and we used our fingers to find the answer and write it.

Pizza Hut Book It
Blake also read books for "Pizza Hut Book It." If you didn't know, Pizza Hut allows homeschoolers to join in the program. Just go to their website and fill in the form. They will send you certificates. It is the perfect motivation to keep Blake reading. He ~~obsesses about~~ loves pizza and he will gladly read books to get some. =)

I printed a reading log from the internet and he has to read 5 books at his current reading level (1.25) to get a free pizza certificate. We read "Five Little Pumpkins," and "The Foot Book" by Dr. Seuss. How do I know the reading levels of each of these books? The Scholastic Website has a "Book Wizard" under the teachers section that allows you to search book titles and find the reading level for each book. I went through all the books we already owned and wrote the reading level inside the cover of each book. That way I know which books he's ready for. Currently, books around 1.25 are perfect for him, they are helping him learn, but not so difficult that he becomes frustrated. We also use some leveled readers from the Reading A-Z website. (It also offers a free trial.)

Explode the Code
Adrian worked on "Explode the Code - Book C Worksheets," in addition to doing Reading Eggs. He gets the online help and he gets the paper worksheets also. It's my favorite phonics program for kids. Today, we did the letter "x," but when I asked him at the beginning of the lesson "what sound does x make?" he already knw the answer... "ks" like at the end of box and fox. We did the lesson anyway, it's good reinforcement and explode the code throws other letter sounds you've already practiced into each lesson. We did 5 pages and the only letter he missed on any page was "t," so now I know that is a letter that it would help to review for tomorrow.

You Can Easily Judge a Man's Character....

2011-09-29T19:41:00.000-07:00

I recently saw this posted on Facebook:

It resonated with me. For a long time I have privately referred to my youngest boys as my "little character detectors." Although, I recognized this to be true, I'd never considered why. This photo made it crystal clear. Truly kind people are graceful to others, not for any reason, but just because they are.

Of course, I myself, am not always as full of grace and compassion as I could be. A life lesson and time to work on me.

Zingo for Learning Numbers

2011-09-29T19:27:00.000-07:00

Zingo Numbers teaches recognition of numerals, number words, and also teaches kids to "spot count." Meaning they can identify the number of objects in a set quickly without actually taking the time to count them. Finally, it encourages speed and quick thinking.

My boys love this game. We homeschool and I've found one of the most practical ways to teach math is hands-on with games. It makes it fun and they need that experience applying math concepts. Sometimes, they beat me, grabbing the numbers more quickly than I. =)

Writing Numbers

2011-09-16T19:20:00.000-07:00

If you aren't sure what numbers your child can write, just give them a piece of paper and ask them to begin with number 1 and write as high as they can. As the numbers get more challenging for them, they may turn them around or write them incorrectly. That's alright, simply correct the error and continue, to see if they understand the basic components. Teens start with 1, twenties with 2, etc. When writing past 20, your child will recognize that the numbers 1-9 repeat.

Once you know how high your child can write comfortably, practice writing 10 numbers beyond that each week. My kids are currently working at a first grade level and are practicing writing numbers between 20 and 50.

Recognizing Numbers | Number Recognition

2011-09-16T19:11:00.000-07:00

One of our favorite games to practice number recognition is "Number Basketball." It's a homemade game, created by cutting circles from index cards so that they look like basketballs. Then you write the numbers on the basketballs that your child is learning to recognize.

To Play the Game, you will need:

Number Basketballs (that you made)
A small basket, or bin

Directions:

Throw the paper basketballs up into the air and allow them to scatter over the floor.
Call out the numbers in any order.
As you call out the number, the child looks for it.
When they find it, they get to slam dunk it in the bin.

My boys love this game! You can also make the paper basketballs in the shapes of footballs or baseballs if you wish.

Homeschooling Schedules and Enjoying the Fall Weather

2011-09-10T11:34:00.000-07:00

This is a bit of a rambling post. We haven't been studying at all this week. Instead, we spent most of our time outside!

With fall just around the corner, the temperatures are dropping here in Kansas. It's time to say goodbye to summer and welcome the cooler temperature. The average high has been 75-80 degrees, nearly perfect weather.

As homeschoolers, we study all summer. We spent many of the super hot days inside studying in the air conditioning. Those extra days of school this summer allow us to take a break this fall. I find it works best to work with the weather as a homeschooler, rather than adhering to a typical school schedule. Because of this, we've spent this week outdoors enjoying the beautiful days outside.

Come to think of it, I should probably work in some science adventures with the nice weather. We can collect fall leaves, hunt for nuts, or observe some animals. There is never a shortage of squirrels and deer around our home.

How do you schedule your homeschool? I've noticed that there is a lot of variation to how people prefer to schedule. Some follow the schedule of the local school district. Some don't and cite flexibility as one of the reasons they opted to homeschool in the first place. Unschoolers believe that structuring lessons squashes the enthusiasm to learn. Curriculum isn't often used by unschoolers.

We are somewhere in the middle. I prefer to vary our school schedule. I do use some curriculum, but find life to be much more educational. Games are a big part of our learning process also. There is a lot that can be taught through games! For anyone interested in learning through educational games, check out the Lakeshore Learning materials from Amazon.com.

Patterning and Sequencing for Kids with Down Syndrome

2011-09-03T15:47:00.000-07:00

Today, a Facebook friend mentioned that her child with Down syndrome was having trouble with patterning. For example, continuing a pattern of:
A B C A B C.

It is a skill that children work on in preschool and early elementary school. As I was responding to her post with what helped us learn patterning, it occurred to me that I'd never mentioned it here. So, here it goes:

Patterning worksheets look like this:


Patterning or Sequencing Worksheet

More worksheets are available at: http://www.kidzone.ws/prek_wrksht/math-readiness/math-patterns1.htm

Preschool students usually begin with a pattern similar to that above A, B, A, B and progress to more complicated patterns in Kindergarten, First and Second grade. If your child is working on patterning for the first time, it never hurts to start at the beginning level.

Sometimes, kids are unable to identify the pattern immediately. You can help them by "ringing the rule." I learned about this method while using the K12 Math curriculum for Kindergarten students. It is one of the best methods I've come across for teaching patterning and I've browsed a lot of Kindergarten math curriculum!

Ringing the rule is simply circling the first instance of the pattern. For example, in the pattern A B A B, the first A B would be circled to show that this "rule" repeats over and over again. This helps all children visualize the pattern and as you probably know kids with Down syndrome are usually visual learners.

Using the worksheet above, I would circle the first star and square. I might also circle the second star and square and explain to the child that the pattern is "star, square" (long pause) "star, square" (long pause) "star, square." As you repeat the pattern verbally, and look at the visual, encourage the child to join in saying "star, square" as you go along.

Patterning continues to be one of the weaker areas for my kids, but with long pauses between repeats of the pattern and visual cues of ringing the rule, we are able to complete patterning worksheets at the grade level in which they are working.

Patterning boards and cards can make a game of it and help with reinforcement. We use a patterning board similar to this one:

Dry erase pens can be used on the cards that come with most patterning boards. This makes it easy to identify the rule on the boards, as well as worksheets.

Patterning is sometimes called sequencing. Your child will work on sequencing numbers, letters, events from a story, and many other things throughout elementary school. This will help them learn to identify logical flow and patterns independently.

Counting Past Ten for Children with Down Syndrome

2011-09-02T20:38:00.000-07:00

Many children get stuck when trying to count past the numbers 10 and 20. What worked well for us was just to count daily. I had a plastic container that I kept pennies in and each evening we counted pennies. In addition to counting pennies we count people in line at the store, forks as we put them away, plates we need to set the table, etc. We count everything.

To help your child progress, let them count as high as they are able and fill in the next number or two for them. When they are stuck not knowing what to add after 10, say, "eleven, twelve." Eventually, the child will be able to say the numbers themselves. Repetition is the key.

Thirteen is a difficult number and it helped us tremendously when working on numbers 10-20 to refer to them as 3teen, rather than thirteen, 5teen, rather than fifteen, etc.

When a child moves past 20, they are really developing an awareness that numbers 1-9 repeat and the number before it changes. To move past twenty, we printed out a large chart of numbers 1-50. (Actually it was 1-100 and I just kept the last 50 folded back behind to avoid confusion.) The numbers should be in rows of 10 with 10, 20, 30, 40 and 50 at the end of each row. I ran a highlighter along the tens to help them stand out. I put it on the wall where we would see it daily.

Each evening as my child counting past 20 was ready to count, we went to the wall chart and counted 1 - 30 looking at the numbers as we counted them. One of the stumble blocks is that kids can hear the number "thirty," for example, as thirteen instead, "Seventy" as "Seventeen," etc. I think they do this because they are familiar with the teen numbers. To help them get over this hump, I wrote the words for 10, 20, 30, 40 and 50 below these numbers. I talked to them about the tens and pronounced them repeatedly as clearly as I could pointing out that they were different than the teens. We did this for a while and after a week or so, we were able to clearly say the numbers all the way through 50 without getting them mixed up.

The following week we dropped down the second half of the chart and they are now able to recite all the numbers 1 - 100 looking at the chart. For the next few weeks, I expect to be counting as far as possible independently (without the chart). We sometimes pause after 29, 39, 49, etc. trying to remember what comes next, but that is part of the process. If they get stuck, I just fill in the number for them and then they are back in the groove counting again. I'm hoping to soon brag that we've made it all the way to 100 without the chart!

What are your favorite ways to teach counting?

Adding Coins

2011-09-02T19:33:00.000-07:00

Once a child with Down syndrome knows the value of each coin and how to "count on" from a given number, it is time to begin adding coins! Fun, real life math! We worked on this today and we started with a nickel. I began by asking, "How much is a nickel worth?" I got the correct answer, "5 cents."

So, then I counted on from the nickel to show them how to do it.
I set the nickel down and said, "Five cents."
I placed a penny beside it and said, "Six cents."
I placed one more penny beside the other coins and said, "Seven cents."
"How many cents is there?... Seven!"

Then I asked them to try. I showed them to place the nickel down first and asked how much it was worth. Then encouraged them to place a penny down and count on from five.

We worked on this repeatedly until at the end of the lesson, they were able to begin with a nickel and make any number that I called out from 6-9 cents. I loved seeing them able to add coins and work on a skill that they can use throughout their lives!

If you are thinking about working on this same activity, it's important that the child have an understanding of "cents." Before you begin, you may want to review that a penny is "one cent" and that it takes 5 pennies or "cents" to make one nickle. You can do this with dimes and quarters too. We did this laying out 25 pennies and talking about how there are "25 pennies (or cents) in a quarter." There are "5 pennies (or cents) in a nickel" and "10 pennies (or cents) in a dime."

Long and Short Vowel Sounds

2011-08-01T20:03:00.000-07:00

We are getting reading to start 1st grade reading and my plans are to start short and long vowel sounds at the beginning of the year. I plan to begin by presenting a word, such as "rat," which we've been reading while practicing consonant-vowel-consonant words, otherwise known as CVC words.

I will show them how adding an "e" at the end changes the vowel to a long vowel sound (it's name "a") instead of short a. I'll also point out that the "e" is silent. This concept we will practice for many months! Repetition is the key for many kids, but is critical for kids with Down syndrome. I will also be working with them on consonant blends, but I don't think those will present as much challenge for us.

Before I got started with the long and short vowel sounds, I realized that I needed to reinforce the difference between a vowel and a consonant. I began with our GNU game. It has letter tiles that are black for consonants and red for vowels. We laid them all out in ABC order (good for practicing!) then I showed them the red letters were vowels. I had them take turns pointing to the red letters and saying, "A, E, I, O, U." We aren't going to focus on Y until later.

We are going to repeat this activity all week (repetition!) to ensure they have vowels memorized. For some reason the game has no letter "Q," but I don't think it matters much for the overall purpose of visualizing the vowels.

Finally, we got the game "vowel sounds bingo" from LakeshoreLearning.com. It is very visual and reinforces long and short vowels. It's played by drawing a card marked with a long or short vowel and the kids have to find a picture on their bingo card with that vowel sound. The pictures on the bingo card have the word written below and the vowel highlighted in a contrasting color.

Calendar Skills

2011-08-01T16:14:00.000-07:00

I wanted to share with you some of the things that have helped my boys improve their calendar skills.

1. We purchased a calendar that had a black and white photo on the top of each page. When the month came, they got to color the picture. For example, December had snow, a Christmas tree, candy canes and gifts, so children could associate the month with winter and Christmas.

2. I let them cross off the day on the calendar each morning for a few months. This gave them an idea of one day passing.

3. After they had a grasp on "one day." We talked a lot about when things were coming up at bedtime. For example, I would tell them "in two days we go to the movies." I would sometimes elaborate like this, "Go to bed. Wake up. Go to school (or whatever the plan for the day was.) Go to bed. Then MOVIES!" They understood a day as ending at bedtime and it helped them a lot.

4. We are currently learning days of the week. We tried a lot of different things, such as singing. What helped most was simply standing in front of the calendar and having Blake read across the top of the calendar, the days of the week in order. They got the repetition of hearing them and he seemed to like doing it. He is proud that he can now READ! Next, I used the days of the week cards that I'd made on the computer by using a very large font. I cut them apart and had him practice sorting the days of the week in order after reading them from the calendar.

5. Our goal for the coming year is to learn the months in order. We will likely do this the same way that we learned the days of the week in order.

My Baby is 10!

2011-08-01T15:46:00.000-07:00

This week is Adrian's 10th birthday. He's so excited. We went to Chucky Cheeses today. We met brother Ben there. We made a cake and had a small celebration at home as well.

CVC Words and Word Families

2011-08-01T15:25:00.000-07:00

We've been working so hard on reading reading CVC words. After about 6 months of doing this, we have it master quite well. We're focusing on word families:

word family worksheets
using spinners and sliders
and sorting CVC word cards into word families
GNU spelling

Word Family Worksheets:
Some of the commercial resources we use for this purpose are the "Explode the Code" workbook series. I can't say enough good things about his phonics program. It the reason my kids with Down syndrome can read. Book 1 1/2 is for additional practice. This series provides a lot of repetition that my kids needed.

There are also word family worksheets available for free at Education.com.

Spinners and Sliders

I made these using the reproducible pages in the back of "Teaching Reading to Children with Down Syndrome." I mounted them to cardboard from an old box and laminated them. Here is a picture of the spinners and sliders made from this book:

The book has the "ug" "ig" "at" and "an" spinners.

Another wonderful commercial resource of spinners and sliders comes from Lake Shore Learning.

Sorting Words into Families
Many of the worksheets we have used to sort words into families have come from the ReadingA-Z.com website. We use the leveled readers on this site faithfully. Some of the worksheets that come with the books have words that can be cut out and sorted. Education.com also word family sort worksheets. We just got the word sort houses from Lake Shore Learning. Using all these resources, we'll have no excuse for failing to master word families!

GNU
This is a board game, which my kids love, that encourages spelling of cvc words. You can use it to make typical words or nonsense words. It's made by Think Fun. I always find them to be a reliable manufacturer of educational games that my boys love.

All of these activities reinforce beginning, middle, and ending letter sounds. They also help children decode words faster in the future and help them grasp the concept that some words end with the same letters, or rhyme. Rhyming is often a difficult concept for kids with Down syndrome to grasp but helping them visualize it through word families will help them understand rhyming.

Teaching Children with Down Syndrome to Read a Clock

2011-08-01T14:54:00.000-07:00

We've been working on clock skills and telling time. In the beginning, we practiced looking at pictures of clocks with the hour hand (short hand) set to a certain hour and the minute hand always set on 12. Before that, we looked at the clocks without a minute hand so there was no confusion.

When we added the minute hand the idea was to always understand that it's the short hand that you look at for reading the hour and not the long hand. When introducing the minute hand, initially ensure that it is in the 12 position.

Once they have that concept firmly understood, it's time to move on to knowing that there's other minute hand settings besides just the "o'clock", or 12 position. It's best to learn the six position next, or "thirty." Later you can introduce quarter hours.

At some point in this process, you can introduce children to real clocks (not the play clocks and worksheets your child is accustom to.) At home, in restaurants, schools, or anyplace you think of it, make sure that they can recognize where the clocks are located and then look at the clock. This gets them used to looking at clocks in daily living.

Ask what number the short hand is on and tell them it's that time. It's on the 5, it's 5 o'clock. As soon as a child can do this, they are able to tell time within the hour.

Later, when half and quarter hours are introduced, kids begin to understand that there's a 2nd part to that equation. The hour hand is read first, then the minutes are read second. The minute hand on the 12 is read o'clock and the minute hand on the 6 is read 30.

Once we have that mastered we'll move to quarters of an hour and the location of the minute hand on 3 or 9.

Facebook for Parents of Children with Down Syndrome

2011-07-23T17:23:00.000-07:00

I am lucky that when I was pregnant there were already email groups established to support parents of children with Down syndrome. I joined several of them and found a great deal of comfort in speaking with people that had already been through the diagnosis.

Like all email lists and online forums, the groups created for parents of kids with Down syndrome were not without scuffles and quarrels. The written word can so easily be misinterpreted.

I joined Facebook a year and a half ago. I added many of the parents I knew from online Down syndrome support groups to my friends list at Facebook. I unsubscribed from the email lists. Since then, I've found some new friends on Facebook strictly by seeing their group posts, or seeing their posts to mutual friends.

I have to say that my Facebook friends that are parents of children with Down syndrome are often my favorite. There is something reassuring about knowing there are others out there that "get it." I love seeing their posts of their children. Many of them I admire because their words are so full of grace and character. I find myself hoping to emulate their actions. I think to myself, "I want to be a mom that says things like that about her child with Down syndrome." There is something very special about these people.

The Facebook layout is less anonymous than an email or forum support groups. I see photos and posts from my Facebook friends daily. I watch their children with Down syndrome grow up with mine. Facebook has done a lot to strengthen the network of people parenting children with Down syndrome.

I've joined many Facebook groups about parenting a child with Down syndrome. I also created a group of my own, where I share my new writing related to Ds. It's very new, but it already has 11 members. I hope to see you there: Down Syndrome Parents.

Counting 10-20 | Teen Numbers for Kids with Down Syndrome

2011-07-20T11:10:00.000-07:00

My oldest son with Down syndrome began counting past 10 a few years ago when he was in the 2nd or 3rd grade. It is one of those skills that has been hard for him, it comes and goes. We chose to work on it this summer, he otherwise works at a first-grade level and this is holding him back.

I read about teaching teen numbers in the book "Teaching Math to People with Down Syndrome." It suggests talking to them about "teenagers" and says this skill can be very difficult for kids with Down syndrome to master.

When he initially learned to do this at school, he was taught to say the numbers slightly different. For example, 13 was not "thir-teen," but rather, "three-teen."

I believe when she stopped working with him and saying the numbers in this special way, they became confusing for him again. I got a puzzle with numbers 1-20. We look at the numbers each day and practice counting:

one
two
three
four
five
six
seven
eight
nine
ten
eleven (he has no trouble with eleven, but if he did I'd call it one-teen )
twelve (he has no trouble with twelve, but if he did I'd call it two-teen)
three-teen
four-teen
five-teen
six-teen
seven-teen
eight-teen
nine-teen
twenty!

Thirteen and fifteen are the numbers that are pronounced uniquely, but saying them this way helps him keep track. It seems to be working! He is able to rote count to 20 again without mistakes. Yesterday, he counted to 30!!

Counting in the twenties doesn't pose the same problem as the teens, because all the numbers are pronounced the same way they are in numbers 1-10, for example twenty-three, and twenty-five. There is no twist in the pronunciation that can be confusing for kids.

Down Syndrome Incidence - Number of Kids Born with Ds Each Year

2011-07-18T18:58:00.000-07:00

When my son was born with Down syndrome in 2000, I remember reading the statistic from the National Down Syndrome Society (NDSS) that 1 in every 801 babies born each year had Ds. Later, the number was 1 in 733. This year the statistic is quoted here from NDSS as 1 in every 691.

I know that there has been a lot of advocacy to reduce the number of pregnancies terminated after a Down syndrome diagnosis. According to this study by PubMed in 1999, rates of termination for Down syndrome after a prenatal diagnosis were 92%.

Do you think the number of children being born each year with Down syndrome has increased from 1 in every 801, to 1 in every 691 because the termination rate is declining? Or do you think the incidence of Down syndrome is rising?

It seems more parents are choosing to continue their pregnancy after a diagnosis. It took quite a bit of researching to find another study on abortion statistics, but I finally found this one done in 2009. This study says that only half of women with a positive blood test opted to have further screening done. Further screening is typically done by amniocentesis.

Of those moms that chose to have an amniocentesis done for confirmation of the Down syndrome diagnosis, only 61.4% opted for termination. The study continues saying that 26.2% had a baby with Ds, 4.5% resulted in miscarriage, and the other 7.9% of outcomes were unknown.

This study does not appear to be as conclusive as the first. It has "unknown outcomes" of 7.9%, but clearly the choice to terminate seems to be down. I hope we see a further decline in the number of moms that opt for termination in the future. Through education and advocacy I think we can get there. I was so scared during my prenatal diagnosis. It would have been so much easier if I'd known then what I know now; Having a child with Down syndrome is wonderful.

Do Special Educators Alienate Parents? IEP Tricks

2011-07-17T18:30:00.000-07:00

My first experience with special education was with the gifted program. In my state, gifted education is handled under the same laws and with the same paperwork as special education. I learned about individualized education plans, or IEPs, prior written notice, and all that lingo with my oldest son who was tested as "gifted." Honestly, it seemed like a lot of paperwork nonsense and I was happy to be dismissed from the meeting and leave.

My son did well at school and would continue to do so with or without gifted education. I'd made the mistake of requesting activities I thought would challenge my son early on and soon learned my ideas weren't welcomed by the school. I learned to fall in, do the paperwork and leave, so they might get on with their jobs.

Several years later, I gave birth to a child with Down syndrome. At my first IEP meeting, I had a lot that I wanted to say before I handed over my special-needs child to a preschool. I'd learned from and online support group that IEPs were very important. Any special medical considerations would need to be listed here. He had plenty of those, so I wanted to ensure I didn't let my son down at his IEP.

I'd also learned from my online support group that if I did not agree with anything said in this meeting, I should refuse to sign this IEP document. This is a parent's only recourse to help get a child's needs met if the school refuses. This was how I'd been educated. Of course, I was naive and knew I'd never need to fight my school for anything. I live in a small town and these people were my friends.

Before my first IEP meeting, I was asked to sign an "attendance sheet." I said everything I'd rehearsed. At the end of the meeting, I waited to sign the IEP. I was happy with how things went and wanted to sign in agreement with what we'd discussed. I was never given that chance.

Later at home, I logged into my online support group and asked why the attendance sheet was stapled to the back of the IEP and why I didn't get a chance to sign this IEP document. I was quickly informed that I'd "fallen for the oldest trick in the book." I was told that schools request signatures prior to the meeting so parents have no opportunity to disagree.

Tricks? Who knew there would be tricks? All of a sudden I was feeling that we were on different sides, me and the school.

In future meetings, I began refusing to sign the "attendance sheet" until the meeting was over. I said what I had to say to advocate for my children and listened while the school staff spoke. I signed the IEP when I was in agreement. After these meetings, I'd leave without seeing what I'd signed. I was told that the IEP would be mailed to me after they typed up what had been discussed in the meeting.

When reading over a few of these IEP documents that were mailed to me, I quickly noticed that nothing I said, as a parent, was ever recorded.

Fun, more tricks.

I spoke to an educational advocate who helped me understand what I should do next. To get my concerns addressed in the IEP, I would need to request a new meeting, then take my own "note taker" to the meeting. This note taker should write down everything that I said. The school should then be presented with these notes and I should insist they be documented in the official IEP.

I don't know about you, but at this point I'm feeling quite alienated. Why would I want entrust my child to people that seem determined to work against me? I'm trying to do what is best for my child.

I've said that directly to special educators. They replied, "Why do you think that is?" Me, "I don't know why?" Their response, "funding."

Our public schools are understaffed and underfunded. My child has special needs. The special educator I spoke to seemed to think the contradiction of this situation is justification to keep tricking parents. Why not be honest with me and tell me they refuse to provide simple services I request?

The answer is because they are afraid of being sued. If they refuse, I have the right to sue the school. They know most parents will win in court. They know the law guarantees services that they don't have funding to provide. They are willing to trick parents to keep from being legally responsible for these services. They are also willing to lie.

In the school's defense, I've heard horror stories about parents demanding elevators be placed in the school for their child. I'm not an unreasonable parent. I've requested my child's medical concerns be addressed and I've asked for summer speech services. That's it. Their response had been to ignore my requests and fail to document medical needs in the IEP, because they don't want to be legally liable.

Outside of school, I knew and liked these people. After experiencing them as special education professionals, I don't particularly like them or trust them with my children. Is this what schools have been reduced to?

Other parents tell me, don't be so sensitive, this is how the game is played. Games? I do not want to play games with my children.

Tell me what you think!

What is Down Syndrome Like for Kids

2011-07-17T17:52:00.000-07:00

When my biological son with Down syndrome was diagnosed prenatally, I spent a lot of time wondering what Down syndrome was like. I had no idea how this would make things different for my kid. How would it make parenting him different? It took me weeks to get up the courage to browse the books I'd bought about babies with Down syndrome to view the photos.

I read over and over again that children with Down syndrome shared some features, but overall they were more like their families than each other. I had trouble grasping this as a pregnant mom wondering about the unknown, but it is 100% accurate.

Kids with Down syndrome look like their parents. My son with Down syndrome has blonde hair like I do. He has heavy dark eyebrows like I do. He is an introvert like me. When I look at him, I can also see that he has his father's build and stature. He also has his fathers toes. It's a lot like raising any other child, you can find many features that resemble those of each parent in you child. My son also has "Down syndrome features."

He has a deep crease that runs straight across the palm of his hand. This is typically known as a "Down syndrome" feature and almost all children with Down syndrome have these. Interestingly enough, so did the doctor that helped deliver my son. He showed it to us after our child was born.

Our son has the folds on the inner corners of his eyes that are typical of Down syndrome. They call these "epicanthic folds." After growing used to seeing the eyes of my biological son with Down syndrome and my adopted son with Down syndrome, I don't notice them. Sometimes now, I will see a child with Down syndrome and think they are cuter that typical children. Their eyes remind me of sweetness and innocence.

I find myself often wondering what my adopted son's mother looked like. I look at his features and imagine that I've seen her from the features that she bestowed on my son. This supports the idea that kids with Down syndrome look more like their families than other people with Down syndrome.

Kids with Down syndrome reach milestones more slowly than their peers. That is the only difference I notice as a parent. My sons are currently 10 and 9 and they do things that any 5 years old kids would do. They are working near the Kindergarten level in school also.

I hear stereotypes like, "Kids with Down syndrome steal food." "Kids with Down syndrome wander away." "Kids with Down sydnrome like to hug." None of these stereotypes hold true for my children. They do not steal food. They sometimes get their own food from the refrigerator (and clean up their mess!), but it's food for our entire family, so I'd hardly call it stealing. They do not wander, although that was an issue when they were smaller. They began walking before they had an awareness of what to be afraid of (cars, steep hills, etc.) As they grew, the wandering away stopped. My children do not hug strangers. They are, however, very loving and caring people. I hope that I raised them that way.

Teaching Money Skills

2011-07-12T22:19:00.001-07:00

I don't think there is a better motivator to teach kids money skills than telling kids how much money it costs to buy things they want. We don't keep soda in the house, but my kids know it takes 4 quarters to buy it from the machine downtown.

Today, I was walking past the laundry room and saw the door open, so I peaked in. I saw Blake sitting with his legs crossed on the top of the dryer. I said, "What are you doing?" He replied, "Getting 4 quarters for pop!" He held up 4 fingers. I said, "Yes, 4 quarters equals $1.00 and that is what it takes to buy pop."

Sight Words for Children with Down Syndrome

2011-06-24T12:12:00.000-07:00

We got a 5 new games today from Amazon.com. I set out all the new games and my 9 and 10 year old with Down Syndrome chose the POP for Sight Words game to play first.

The game comes with many sight words on cards that look like popcorn. Each person draws a piece of popcorn out of the popcorn box and takes their turn reading the word. If they get it right, they get to keep their piece. If they get it wrong, they return it to the popcorn bucket. We adapted the game slightly for my 9-year-old who isn't ready to read sight words yet. Instead, he told us the first letter of each.

We began playing and soon I realized that there was something missing. The boys looked a bit disappointed. I asked, "Do we need to make popcorn to eat while we play this game?" An excited, "Yes!" was the response from both.

I made popcorn and we continued to play. It amused me that neither of them would take popcorn from the bowl of real popcorn that I'd made unless they got an answer correct. They rewarded themselves for each correct answer by taking real popcorn from the bucket and throwing it into the air, trying to catch it with their mouths. It was a little messy, but I don't care as long as they are learning! It was a lot of fun.

Recycling Resources and Games for Homeschooling

2011-06-18T14:25:00.000-07:00

Technically, I'm no longer a homeschooling mom. Both my boys will be attending public school next year, but I enjoyed the homeschooling process so much, that I plan to stay very involved in their education. During my time as a homeschooling mom I made so many discoveries. I learned more about what they were actively learning, what they already knew, and what they still needed to learn in the future. I enjoyed my time with them and seeing the spark in their eyes and they discovered something new. I'm not in a big hurry to let that go, so I intend to stay very involved in the learning process for my kids with Down syndrome.

One of the easiest ways parents can get involved with learning is by playing educational games with your child. The books, "Teaching Math to People with Down Syndrome," and "Teaching Reading to People with Down Syndrome," are packed with games that you can make at home to help your child learn. If you don't have the time to make the games yourself the books also contain a resource section that recommends commercial games for each learning stage.

I wanted my children to learn about recycling, so I recently gathered lots of resources for teaching recycling to kids and placed them on this webpage: "Recycling Worksheets for Kids." It has mazes, coloring sheets, matching sheets that let kids sort recycling into bins, award certificates, and free online games about recycling.

Discrimination Against Children with Disabilities

2011-06-18T13:53:00.000-07:00

It was summer of 2000 and my 9 and 8-year-old sons were playing baseball. I was at their game, sitting in the bleachers and waiting for it to start. Another mother came and sat by me. Her son was in my 8-year-old’s class at school. They played with each other sometimes after school. That is up until that day....

The mother was complaining about homework from the school, she said there was too much and reported that she called the school regularly to let them know she did not approve. At some point, she shifted the conversation to a disabled student in the classroom. She said, "What do you think of him being in the classroom?" Before I'd formed an answer, she was saying, "He has no business being in there with the rest of the kids!"

The disabled child she was speaking about had run a high fever as an infant. He had survived, but he had never fully recovered. He now needed assistance walking and talking. His parents had been just a few years older than me in school in our little town. They were very nice people and when I thought about the boy, I personally felt nothing but sadness and sympathy for him and his parents. It had never occurred to me that I should have any opinion about his placement in the classroom. He wasn't a disruptive child. Given that his presence in the class didn't impact my son's learning it seemed that placement should be up to his parents and the school.

I was pregnant and in my second trimester of carrying my biological son with Down syndrome at the time of this conversation. My family knew of the diagnosis, but word must not have spread around my small little town yet. On that day, I don't believe that parent knew she was speaking to the future mother of a child with Down syndrome. She didn't know that I would soon make decisions about inclusion for my own child. I'm not sure that I had fully grasped who I was and who I was to become either. It would take me several years to find my voice to advocate for kids with disabilities.

I don't believe people discriminate this way intentionally. There are those people that are bullies, but for most people I believe it's lack of knowledge and understanding that causes people to act so full of prejudice. I write about events like this to compel people to put themselves in the shoes of others and think before they discriminate.

Dealing with Prejudice and Discrimination

2011-06-18T12:46:00.000-07:00

When my children with Down syndrome were three and four years old, our school opened a preschool for kids with special needs in the elementary school building. I was told that the preschool would contain children identified with learning disabilities and peer models. I was eager to try it, so I asked, "How should I enroll them?" I was told to ask about the preschool at the regular school enrollment.

I already had a son in jr. high and a son in high school that year. They were well known by the school staff. It's a small school. I reached the table to pay enrollment fees to the district secretary. I had looked around and didn't see signs designating preschool enrollment.

"Where do you sign up for the preschool?" I asked Mrs. Mounkes. "I don't know," she said wrinkling her nose as if she smelled something sour. "You don't want your kids to go there anyway it's a special preschool."

I've heard the word special pronounced that way before, as if it is a disease, or something to be avoided. It never fails to amaze me how some people can be blatantly discriminatory when they think that you won't mind. Apparently, she didn't realize that I had 2 special needs toddlers. I nodded and said, "I have two special needs kids, they won't be peer models." I don't know if she remembers this conversation, but I will never forget it.

Do you have a child with special needs? How do you deal with discrimination? I deal with it by writing about it and sharing my experiences with others. Perhaps through knowledge and advocacy we can make changes.

Zingo Makes Learning to Read Easier

2011-06-17T21:43:00.000-07:00

I am always looking for games to help teach my kids with Down syndrome. Last year, I homeschooled one of my boys. I purchased the Kindergarten curriculum from the K12 website and tried to do it with him. It was stressful for me because there are a lot of materials to gather before each subject and it requires a lot of time to prepare by reading through each lesson. Not only was it stressful for me, he hated doing it. He implemented many avoidance strategies when we were doing the K12 lessons.

I soon learned that the best way to teach my son was to use workbooks at his level, such as the Kindergarten Comprehensive Curriculum of Basic Skills. (It was our favorite!) The instructions are simple and there is nothing to gather to prepare to do the work, except a pencil or crayons. We would sit on the couch together and I'd let him pick out a page he wanted to do. If he didn't understand something about it, I explained it to him. I was more comfortable this way and I know he was because he didn't avoid this type of learning.

A step up from not avoiding the work is actually ENJOYING it. My boys love playing games. Their favorite game is Zingo. It is played like bingo. The kids match the pictures on their card with pictures that are drawn. When they get three in a row they win, or you can also play blackout and fill in the entire card. Below each pictures are common. They kids get exposure to words like bird, pig, cat, etc.

Games to Learn Money Skills for Kids

2011-06-16T12:53:00.000-07:00

Today, we played store to practice our money skills. We've done this before, using play food labeled with cents. One child plays the shopkeeper and has his cash register in front of him. The other child plays the shopper and selects food and pays for it.

We were ready to move to dollars. This is a bit trickier, as a child must see a price (example: $4) and realize that a $1.00 bill isn't enough to pay for the item. That they must go to the next higher bill and use a $5.00. To simplify things I only let them have one of each bill. The child playing the shopper had one $1, one $5, one $10, etc. Here are some free printable dollar bills online.

I was letting them sift through the food before we got started to put new $ labels on each food, as we had always used cents in the past. I found it interesting that they priced the food according to how much they wanted it. A stalk of celery at our store is worth only $1.00, while an ice cream cone is worth a whopping $16.00! =) Kids are so much fun.

After we had our shop set up, the shopper browsed the food we had lined up on the floor. He selected one item, then handed it to the shopkeeper. The shopkeeper (usually) pushed the right buttons on the cash register and told the shopper how much was owed. The shopper then handed over their money, rounding up to the nearest dollar. I made change if it was necessary and the shopkeeper bagged up the groceries in a plastic sack. Finally, every shopper leaves our story with a hearty, "Thank you and come again!" Actually, Adrian was fond of saying, "Thank you for shopping me!" If only all cashiers were still polite to customers. ;)

Children with Down Syndrome Can Learn to Ride a Bike!

2011-06-12T16:04:00.000-07:00

My two boys with Down syndrome, who are ages 9 and 10, recently attended the "Lose the Training Wheels Bike Camp," in Topeka, KS. The staff from Lose the Training Wheels travel around the country hosting camps in various locations each year. You can learn more about the organization here at their Website: Lose The Training Wheels

Although I'd heard about the bike camp when it came to Kansas City, we didn't go because it was too far. When I heard through the local Down syndrome parent support group that the bike camp was coming to Topeka, I knew we had to try it! We signed up for the event through the intake coordinator at the Capper Foundation.

On the Lose the Training Wheels website, there is information about the requirements for the camp. For example, children must have a disability, they must have an inseam at least 20 inches long, and be at least 8 years old. My 9-year-old barely met the inseam and age requirements, but I decided at the very least he would come home from the camp feeling more comfortable on his bike.

The camp relies heavily on volunteers to assist children. The volunteers helping my youngest son certainly got a work out! They have a high success rate. They have a special wheel that is used to teach the children balance before they ride on their own. They also put handles on the back of the bikes to assist in spotting as they ride independently.

As I mentioned before, I was skeptical that my boys with Down syndrome would be able to ride without training wheels. Boy was I in for a surprise! Both of them learned to ride without training wheels and they couldn't be more excited.

You can view a video from the camp filmed by our local news station:
http://www.ktka.com/news/2011/jun/10/topeka-kids-shed-wheels-after-rolling-through-trai/

Down Syndrome in Pregnancy | One Mother's Story

2011-06-07T16:00:00.000-07:00

When I was 29, prenatal testing determined that my third child would be born with Down syndrome. Finding out that your child may have a disability can be emotionally challenging and confusing. During that time, I spent many hours educating myself about medical testing and learning what to expect for a child with Down syndrome. Navigating new medical terminology during such a fragile time can seem overwhelming.

My hope is to put many of those facts and terms into simple English by sharing my experience. Perhaps a more fitting title would be "Testing and Diagnosis of Down Syndrome for Dummies." I've included testing information from the most reliable sources, the National Down syndrome society and Woodbine House books and included them in this mom's story of a prenatal diagnosis.

Read more at: Down Syndrome in Pregnancy | One Mother's Story

How Parenting a Child with Down Syndrome has Changed Me

2011-06-04T23:00:00.000-07:00

I was a parent before having my child with Down syndrome, but I believe I was a selfish parent. I made the mistake of viewing my children as a measure of my parental successes and failures, as many of us do. Children can easily be made to feel like trophies, rather than individuals.

Raising a child with Down syndrome forced me to reevaluate my expectations. To celebrate my child's accomplishments, rather than measure successes against those of other children. Learning to value individual accomplishments without comparison is what makes parenting a child with Down syndrome joyous. It is a life lesson that I am glad I was given.

How Do You Get Down Syndome?

2011-05-21T15:57:00.000-07:00

People that don't have experience with Down syndrome often misunderstand the cause. Some people believe that it is a contagious, hereditary, or a result of drug use. The truth is that Down syndrome isn't contagious, or a result of drug and alcohol use. Some cases, but fewer than 3% are a result of heredity. It occurs equally across all races and economic classifications.

The only known contributing factor to having a child with Down syndrome is increased maternal age, or age of the mother. Despite this increased risk for older moms, the majority of babies with Down syndrome are born to moms under age 35. This is because there are many more women under age 35 giving birth and women of all age have some risk. To understand what causes Down Syndrome you must first understand a little about genetics.

Read More:
"How Do You Get Down Syndome?"

Reading A-Z.com and IXL.com for Homeschooling Parents

2011-04-12T20:28:00.000-07:00

I can't tell you how much I love the websites readingA-Z.com and IXL.com for homeschooling parents. They keep you on track as to where your child is at in reading and math and help guide you to the next skills that your child needs to work on. I'm not getting paid to say this so there is no motivation other than to share two wonderful tools that have helped us tremendously.

ReadingA-Z is for reading, phonics, vocabulary, and comprehension. Pretty much any reading skill your child needs is covered there. They have printable books and lesson plans that help guide you. They also have assessments that you can give your child to see where they should start or what needs work.

IXL.com is for math and they have skill sets that the child completes online. It's a little like an online workbook. Once your child completes a skill, they get a trophy! The trophies are very motivational. My son gets so excited each time one pops up on the screen he dances around. It makes math fun. Each skill links back to standards and benchmarks for your state, so you can see what level they are working at academically.

When I began homeschooling, many parents recommended simply buying workbooks to do with my child, but I was so nervous. I wanted to be sure I was teaching the right thing. I went a little overboard on buying curriculum. I purchased many online memberships and curriculum from several sites including K12.com. After taking the time to experiment with them all, I can say that all we really needed were the readinga-z and IXL websites. I still purchase workbooks and print worksheets off the internet. I also use many of the curriculum books I purchased, but the reason that I know we are working on the right skills is because of the readingA-Z and IXL.

Jack and the Beanstalk Activities

2011-04-01T19:43:00.000-07:00

The boys and I recently read "Jack and the Beanstalk." To help with reading comprehension we acted out the story as we read it. This really helps my boys with Down syndrome, as they struggle with reading comprehension.

We also printed coloring pages, cut out the characters, taped them to straws and used the characters to act out the old English folktale. The boys enjoyed it so much that they acted out the story on their own for days after. If you want more details on the activities you can do with this story, or if you want to read it for free online, visit Jack and the Beanstalk Activities.

Recycling Worksheets for Homeschoolers

2011-03-30T07:52:00.000-07:00

I was looking online for some recycling worksheets for my kiddos and I learned that the keywords, "recycling worksheets" return a lot of questionable results in search engines, with some possible virus alert pages. So, I located some good resources online with virus free downloads of recycling worksheets. I gathered my collection of resources here: "Recycling Worksheets for Kids" Hopefully, these will be of help to any homeschooling moms looking for recycling printables in the future.

Learning the Letter M - A Day in the Life of a Homeschooling Mom

2011-03-29T22:05:00.000-07:00

Today, we learned the letter M. We traced the letter M with our fingers. We wrote the letter M. We hummed "mmmm" to feel the letter M on our lips. We then went to the store and bought M & M candy. Each child got a dollar to buy their M & Ms. (Life skills) We looked at the letter M on the candy as we ate it.

Today, we are still having trouble differentiating M from W, but we will keep working. Homeschooling is fun!

Down Syndrome Quotes

2011-03-08T15:33:00.001-08:00

Last October, I wanted to do something for Down syndrome awareness month. I created a webpage full of quotes from family members of people with Down syndrome and from the individuals themselves. The page has done quite well, as it gets viewed a lot and I've received many positive comments. You can view it here:

* Down Syndrome Quotes *

If you have a quote that you would like to share on the page, just leave a comment here and let me know, or leave a message on the page itself.

Oral Spelling and CVC Words

2011-02-15T07:12:00.000-08:00

Yesterday, Blake, my 10-year-old with Down syndrome spelled his first word orally getting all the letters in the correct order! Woohoo! Blake is in 4th grade this year and has just begun learning to sound out/read and spell CVC words, or consonant-vowel-consonant words.

Up until this year, he had read sight words, or memorized the look of words, but wasn't sounding them out phonetically. He just knew what mom, dad, and pizza looked like written down on a page. This year, we've been focusing heavily on identifying letters with sounds, phonics and spelling and he has done quite well.

He was talking about a map and I was having trouble understanding him. (Much like his mom, he tends to mumble when he is thinking hard about something.) Once I realized he was saying "map", I robot spoke the letters to ensure he knew how to pronounce the word. He's had hearing problems most of his life that were only recently corrected by surgery, so some words he's been hearing incorrectly for a long time. Robot speaking I said.... "mmmm aaaaaahhh ppppp."
He said, "Yes, map. M-A."
Pleasantly surprised that he had tried to spell it on his own, I said, "M-A-what?" and again robot spoke the letters emphasizing each of the sounds, "mmmm aaaaahhh ppppp," to help him.
"m - a - P!" he said.
Yes, indeed, we are oral spelling! Oral spelling is more difficult for most children than doing it on paper.

Parents of children with disabilities often feel a little lost not knowing what to expect for their child's future. There is no road map.

Will they be able to live independently?
Will they be able to read and write on their own?
Will the be able to work?

Those questions resonate in my mind daily. They drive me to do what I do each day. A few more reading lessons, a little more time talking to encourage speech, a trip to the store to work on money skills. Getting them to achieve to their potential is my life purpose. Today, we got a little closer. We reached a milestone that I hadn't expected...oral spelling. Tonight, we will work some more and perhaps have our own private spelling bee.

We use the "Explode the Code Series" by Nancy Hall to work on phonics and spelling 3 letter CVC words, such as hat, cat, log, dog, etc. I've been very happy with the progress we've made using her workbooks.

Talking Calculators Assist People with Down Syndrome

2011-01-07T07:06:00.000-08:00

Many people are intimidated when faced with assistive technology devices. The talking calculator is the most basic and widely available AT device found. They come in a variety of styles and can be purchased almost anywhere. The important consideration is what might help you, or your loved one with Down syndrome. Talking calculators speak the numbers as they are pushed as verification that the right key was pressed. They also speak the answer making it easier for those with visual impairments to operate. Most talking calculators also come with enlarged buttons and display screens. To read more about how this AT device can help you, or your child with Ds, visit "Talking Calculators and Assistive Technology."

Assistive Technology for Our Kids

2010-12-31T18:35:00.000-08:00

Have you ever wondered exactly what assistive technology is available for our kids? If so, you are not alone. The number one reason for not accessing asstive technology devices is lack of knowledge about what's available. This checklist contains technology available to assist with for hearing, organization, reminders, math, reading and writing.

If you think that a device could help you, or someone you love, check into an assistive technology library. Disability organizations in your local area likely have a library of AT devices that you can check out and try before buying.

Inclusion for Kids with Down syndrome

2010-12-31T18:03:00.000-08:00

Have you ever wondered if inclusion was best for your child with Down syndrome? Until the 70's parents didn't have a lot of choices about how their children with Down syndrome were educated. Passing of the Individuals with Disabilities Education Act ensured that children with Down syndrome would get a chance to participate in the mainstream classroom. As a parent, I spend a lot of time wondering what type of education is best for my child.

Would pull-outs be best? If so, what subjects? Would inclusion be best?

So many questions to answer. If you are interested in statistical data read more here. This article cites the first scientific study done on educating children with down syndrome in public school.

Blake's Reading Progress

2010-12-30T19:28:00.001-08:00

Blake is in 4th grade this year and goes half a day. The other half day, I homeschool him. He has made so much reading progress this year that it is incredible to me. At the end of last year, he had some sight words that he could read, but he couldn't actually sound out words. We started at the very beginning reviewing consonant sounds through the "Get Ready for the Code" workbook series. These include "Get Ready for the Code" books A, B and C. Consonant sounds were review for Blake, so we zoomed through this series.

Next, we began vowel sounds and word families through the "Explode the Code" series. This series is number books 1 through 8. There are also "half" books for extra review. For example, following book 1, there is a workbook titled 1 1/2 for extra review if your child needs it. At the same time that we were doing this at home, Blake was participating in Guided Reading with the 1st grade class at school.

His reading has flourished and he can now read many books! He is always surprising me by sounding out words he sees, or occasionally reading me the instructions on a worksheet!!! I highly recommend the Explode the Code phonics books for children with Down syndrome. It is repetitive and most kids need that reinforcement to succeed.

Christmas 2010

2010-12-30T19:20:00.000-08:00

Blake and Adrian are just beginning to get excited about Santa Claus each year. When you consider that they are developmentally ages 6 and 5, that makes a lot of sense. They always enjoy seeing their older cousins and the family time at our home this year was wonderful. Adrian likes to open presents a lot more than Blake does. Blake got tired of it and wanted to play instead, before all Santa's gifts were unwrapped.

Should Down Syndrome be Cured

2010-10-24T17:48:00.000-07:00

I was recently doing some research, when I came across an article from the New York Times entitled, "Should Down Syndrome be Cured?" Not a surprising title, I've seen this discussion many, many times between mom's talking about their children with Down syndrome. Most will tell you, "No, I wouldn't change a thing." I read through the article and saw comments at the end from readers. I was a little shocked at the accusatory comments at the end, people shocked that a parent would ever choose not to fix their child. To those readers I'd say, "never judge someone until you've walked a mile in their shoes."

I've been on both sides of this debate. I've stated, "Of course I would cure it. I don't want to change them, I'd just be helping them by eliminating many of their challenges. They'd still be the same people".... or would they?

Any parent of a child with Down syndrome has thought to themselves,
"If only I could take away their heart problems..."
"If only I could make it easier for them to speak..."
"If only I could make it easier for them to learn...."
Obviously, we all want to make life easier for our children and help them when they struggle. The question becomes, "Does this change who they turn out to be?"

One might say, "Yes." We are all born with our own challenges and weakness. These things largely determine who we become in life. Telling a parent they MUST want to CHANGE their child with Ds, tells them their child is NOT ok just they way they are. It's a bit like telling someone who is female, "Of course you would want to be male if you could." How about telling a Hispanic child, "Of course you would want to be Caucasian if you had a choice."

Who would make those comments? Nobody ever should.

Why do people automatically assume that we should want to change our children and make them into someone different? We like them just the way the are and don't feel they need changing. Outsiders are starting with the premise that something about them needs fixed. We are telling you they are perfect just the way God created them.

Finally, most parents of children with Down Syndrome will spend their entire lives advocating for their child's acceptance. Be cause the truth is folks, our society ain't there yet. There is still a lot of prejudice against those with cognitive delays. Given the fact that parents evolve into strong advocates for these children, saying we'd like to change them is counterproductive to our cause and that isn't going to happen.

Blessings to you and yours,
HS Schulte

Adrian's 9th Birthday

2010-08-01T17:42:00.000-07:00

Adrian turned 9 the end of July and we had a large party to celebrate. Here are some of the photos. What is most memorable to me about Adrian's 9th birthday is not the party at all, but rather how excited he was for a month before. He kept reminding his brother, "Not Blake's party. Adrian's party!" The day after he said, "Mom, thank you birthday party. Thank you birthday cake!"
Sweetness! :)

My Little Recycle Helper

2010-07-15T15:30:00.001-07:00

I recently recycled a pizza box as a holder for some games I made from recycled materials. Blake noticed the pizza box stored in our library. Soon, I noticed that each time Blake finished off a pizza, he would promptly place the empty box in the library. I don't have the heart to tell him it doesn't go there. It's just so darn cute. :)

Discipline when Parenting a Child with Down Syndrome

2010-07-12T15:22:00.001-07:00

Discipline is not a frequently addressed subject in parenting children with Down syndrome. I would encourage any parent to talk to a pediatric developmental psychologist at least once a year, simply to see if there any behaviors that need addressed. The appointment alone may spark some thinking about needs that wouldn't be considered otherwise. Also, children with Down syndrome should be disciplined at their developmental age, in other words level of functioning. If you child is 6, but thinks like a 3-year-old, by all means discipline them as you would a 3-year-old.

More: Parenting a Child with Down Syndrome: Discipline

Disillusioned - New Standards in AAI and Down Syndrome

2010-07-08T12:07:00.000-07:00

At our last trip to the Down Syndrome clinic, we were told that we needed to be more careful in limiting Blake's activities due to the fact that he has AAI, or atlanto-axial instability. They said this because I told them I allow him to climb and play soccer, despite his diagnosis.

They did a repeat spinal x-ray that day at the clinic. They then sent us follow-up paperwork that shocked me. It said that the x-ray had come back negative for AAI!!! Attached was a note that they had set up an appointment with an orthopedic specialist, or bone doctor, at the children's hospital to further discuss the results.

When we met with the specialist he proceeded to tell us that Blake's x-rays looked exactly as they had for the past 5 years, but that they had modified their standards and under the new standards for AAI and Down syndrome... Blake was no longer at risk.

I looked at him and said, "I came here hoping that our son had miraculously recovered from this thing you call AAI. You are telling me nothing has changed except your standards and that the restrictions we've had in place for the last 5 years of his life are no longer necessary?"

He replied, "The new standards are as they should be."

I've never been a fanatic about enforcing restrictions based on his diagnosis. Blake self-moderates, but there are a few things that have been completely off limits because of the diagnosis. Trampolines and roller coasters being 2 of those things.

I decided to test him, "So, Blake can now go on roller coasters and trampolines like every other child?"

His response, "Well, trampolines have always been job security for me."

He continued telling me it would be best not to allow these activities. I am concerned about the parents that are never told there is a risk in these activities for their children with Down syndrome under the new set of standards.

What do you think of the AAI screenings and diagnosis for children with Down syndrome?

IEP Checklist Application for iPhone

2010-07-03T19:06:00.000-07:00

The Parent Educational Advocacy Training Center (PEATC) has developed a new application for iPhone users called the Individualized Education Plan (IEP) checklist tool. The goal is to help parents and students themselves to be prepared for their next IEP meeting by assisting in tracking 13 areas covered (i.e. strengths and needs, recent evaluations, academic performance, etc.) in the IEP meeting. The tool allows you to track information and make notes to plan ahead. The application is free and can be downloaded at http://www.peatc.org/peatc in English or Spanish.

Number Recognition

2010-06-15T08:42:00.000-07:00

Adrian was having trouble with number recognition. He can count, but he can't identify the numbers. The recommendation in "Teaching Math to People with Down Syndrome," was to get the book "Addition the Fun Way," for kids who had trouble with number recognition. We got the book. It is really a book about addition, so we don't read the book because Adrian isn't ready for that. We DO look at the pictures. It has:

3 bee
4 door
the 5 who drives
sick 6
7th avenue park
and 8 gate

If you can find pictures of these characters online, it may be just as easy to print them. Adrian and I talk about the characters a lot. I really think it is helping.

Dr. Seuss

2010-06-14T10:15:00.000-07:00

I highly recommend the Dr. Seuss beginning reader books for anyone teach their child to read. Blake, my almost 10 year old with Down syndrome pulled out Dr. Seuss's ABC book ... once again. As I read it, I recalled making connections between letters and sounds by reading this book. I went to the library and checked out more of them. Again, I remember reading and learning phonics this way as a child. They teach word families by using words ending in the same sounds. Like any good educational book or toy, they are favorites handed down through generations.

Atlantoaxial Instability in Down syndrome

2010-06-12T14:52:00.000-07:00

Atlantoaxial instability, or AAI. For those that have never heard of it is instability of the spine, it can put people at risk for spinal cord injury. I've read many different statistics as to the prevalence of AAI in children with Down syndrome. Dr. Len Leshin's medical abstract indicates that it is 10-30%. According to this About.com article, 10-20% of people with Down syndrome have asymptomatic AAI (no symptoms or nerve damage) and 1-2% have symptomatic AAI.

According to the book, "Medical and Surgical Care for Children with Down Syndrome," screening should be done for AAI between the child's 2nd and 3rd birthday. Screenings are also required at age 8-10 before the child begins participating in athletics, or the special olympics. Both my 8 and 9-year-old with Down syndrome have been screen several times for AAI. My oldest, Blake has screened positive on X-rays for AAI. My youngest Adrian has screened negative.

What does a positive X-ray mean? Well, they told us that because of the risk of spinal cord and nerve damage to limit his play. No jumping into pools, walk only. No jumping on trampolines, no jarring activities, or rough sports, such as soccer and football.

We DO limit Blake's activities, but of the many diagnosis over the years, this one has never been of particular concern. At our last visit to the Down syndrome clinic at our local children's hospital, they informed me that we were allowing him to do too much. Bear in mind, there is nothing particularly fast, or jarring, about Blake's demeanor. He doesn't much care to run or go fast, so the risk of him falling and seriously injuring himself during play is unlikely. We let him participate in tag, and many sports such as the long jump, knowing that it's unlikely Blake will move any faster than turtle speed. :)

Our last screening for AAI was was done that day at the Children's hospital. The same day they indicated we should be more restrictive in his activities. A month later we got the screening results. To everyone's surprise the X-rays came back negative for AAI. I've been told that children with Ds can outgrow AAI, but that it is somewhat rare. Blake did indeed appear to outgrow it.

They called us and scheduled an appointment with a pediatric orthopedic specialist to discuss the miraculous recovery. You can read more about that here. What we learned will certainly surprise you.

Continue to "Disillusioned; New Standards in Atlanto-axial Instability Screenings."

6/11/10 Homeschool Log

2010-06-11T09:43:00.000-07:00

This morning as I was getting ready for the day, I could hear Blake in his room singing the alphabet and then he said, "Key...K."

Thank you God! :)

We read Dr. Seuss's ABC Beginning Reader book at Blake's request. Then the boys watched Sesame Street's, "Do the Alphabet," while I worked a for a few hours.

We then started Handwriting without Tears. Adrian and I made mat man on the floor. Then, I drew mat man on the chalk board. I erased parts (head, body, legs). Adrian told me what was missing, then I would draw it back on.

Blake practiced writing letters "V" and "W." Mom: "This is capital 'V'. What sound does V make?" Blake: "V... violin from Sesame Street."

Blake read from his "I see ice cream" site word book.

He read numbers 10, 20, 30, 40, 50, 60, 70, 80, 90 and 100 from a printed sheet.

We looked at a work sheet that teaches adding through counters. 2 red + 4 blue = 6 total.

Then he filled in the missing numbers on a worksheet from 1 - 40.

Adrian named and signed colors red, green, yellow and blue successfully. Purple still eludes us.

We played a game where we sorted site words by the letter they begin with. We use paper strips with words printed on them and sort them into bottles labeled with several letters.

5 hours

6/10/10 Homeschool Log

2010-06-10T13:36:00.000-07:00

Blake is 9 and Adrian is 8.

Today, we began by working on reading. I let the boys choose. Blake read his site word cards and Adrian read his letters that I have written on bubble wrap so that he can trace them with his finger and it provides feedback. He has trouble with number and letter recognition, but can count and say the alphabet.

Next, we worked on colors for Adrian by reading to him from the color book and having him name them.

Handwriting included practicing letter U and L from a handwriting without tears worksheet for Blake. Adrian colored orange objects on a handwriting without tears worksheet.

Next, we did touchmath and that went very poorly. For some reason the boys don't seem to like the touchmath program. I am thinking of changing to something different.

We read a counting book for Adrian to count 1-10.

We worked from the School Zone work books (you get these at Walmart). We worked from the preschool book on same and different. Both boys seem to be way behind on this concept as it is an abstract concept. They have trouble with prepositions also.

We looked at numbers from the book, "Addition the Fun Way," to help Adrian with number identification.

We read Blake's homemade alphabet book. Each letter has it's own page. He reads it by saying "Big A, Little a" for example. Then the page lists all the site words he knows that begins with that letter. He reads each word from the page. By the time we get to letter U, he is going ssssllllowwwwly and I am ready to say "Z" and be done. He enjoys the book a lot though.

Next, Blake asked to read Dr. Seuss's ABC book.

We finished up by playing number recognition basketball. It is a game where you trace "balls" onto index cards, cut them out, write several numbers on the cards, and then throw them around the room. The kids locate the "ball" with the number you call out and slam dunk it in the basketball hoop. We use a small trash can that is only used for number, letter or color recognition basketball. We have lots of sets of cards that we use to play basketball. The boys love this game.

4.5 hours

PECS for Kids with Down Syndrome

2010-06-09T13:30:00.000-07:00

When I began learning about raising a child with down syndrome, I heard about something called Picture Exchange Communication System, or PECS. My first understanding of PECS was that they are pictures that look like clipart that kids use to tell you what they want. PECS is really so much more than that, but that gives you a basic understanding of what you would be looking at... picture cards with words.

Ways We Tried to Use PECS that Didn't Work
PECS is used frequently with children who have autism, but it benefits children who have Down syndrome also because they tend to be visual learners and because their expressive language skills often lag far behind their understanding of the world. After discussing PECS with our Birth to 3 program teacher, she made up some small books with photos of our family and some introductory words such as drink, eat, outside, etc. that we could read with Blake.

We never grasped PECS as a method of communication for Blake. The reason was because to have him use the cards to indicate.. drink, eat, play, for example the cards would need to be with us 24 hours a day and that was not practical short of pinning them to his clothes. Also, the right word or card may not be there if there were too few cards and would be difficult to find if there were too many. I've heard this expressed repeatedly by other parents of young kids with Down syndrome, so I know I am not alone in my sentiment. It was easier to implement sign language as your hands are always there.

How PECS *DOES* Work for Kids with Down Syndrome
Usually PECS come in 1 or 2 inch square cards and contain a picture and a word. You do not need to buy an expensive program to use them, there are free sources of PECS online, or you can use clipart and make your own. People use the picture cards in a variety of ways including:

Coloring Pages or Photos to Teach an Abstract Concept Such as "OUTSIDE"
Story Boards to Visually Outline a Daily Routine
Choice Boards
To Tell a Story

Coloring Pages or Photos to Teach an Abstract Concept Such as "OUTSIDE"
Coloring pages or photos can be used to teach children something they do not understand. If you were to teach the word "ball," for example, you could just show the child a ball. However, if you want to teach the word "outside," "on," or "under," those are less concrete and can be taught successful by showing the child a variety of pictures representing those words.

Story Boards to Visually Outline a Daily Routine
Story boards could be a classroom routine, a teeth brushing routine, a toileting routine, or a morning routine. Outlining these daily routines in order with pictures helps the child to understand what is expected of them and what comes next in their day. Children, all children, tend to be more cooperative when they have a broader understanding of their daily routines.

Choice Boards
Choice boards can be implemented. I wouldn't recommend a choice board that has bubbles, juice, food, toys, and every aspect of a child's life represented. However, they do seem to work when they are more specialized. For example, you could print photos of the child's favorite foods and keep them on top of the refrigerator. In the event that you want the child to be able to pick their meal, you could offer them only the foods that you have the ingredients to make as choices. They can look at the pictures and select the one they want.

This works because you are only offering what you know you have on hand. Also, you can not simply show a child a plate of prepared spaghetti or macaroni and cheese before preparing them without the use of the PECS cards. It allows the child to see the finished product and get a better idea of what they are being offered. The juice cards we used had a glass with a picture to the side of a grape, apple, orange, etc. Through offering the different types of juice, Blake eventually recognized that choosing the card with the grape, got him the juice flavor he liked, so he began to identify his favorite juice as "grape juice."

To Tell a Story
Blake and Adrian are at the age now that they communicate pretty well, but another way we continue to implement PECS is to tell a story. If you ask them what they did that day, they will answer you, but it likely won't be the right answer. Our speech therapist indicated that this can be overcome by taking lots of photos of the days events and talking about them at the end of each day. She said the more often the connection is made, the less necessary the photos will be for them to make the recollection of the days events.

Homeschooling Children with Down Syndrome: Teaching Reading

2010-06-08T16:30:00.000-07:00

I homeschool Blake and Adrian using the techniques outlined in the book "Teaching Reading to People with Down syndrome," published by Woodbine House. Blake knows his alphabet, approximately 40 site words, and has just begun learning how to sound out words. This is a typical day of learning reading for him.

We run through his site words once. They are on flash cards and I keep them in a Rolodex in alphabetical order. Each week, we add a word. When a word is so well known that you can be sure it will not be forgotten, you can drop it from the daily routine. For example, we don't site read his name each day. He uses that often and it isn't likely to be forgotten.

After going through the site words, he reads me his words from his alphabet book that I made. It includes all the words that he knows and they are alphabetized by letter. At the top of each page is the letter in capital and lowercase. On the page are all the words he knows that begin with that letter.

We also have other books that I have made that include only his site words. They are books that he can read independently. For example, he knows the words "Mommy," "Daddy," "Adrian," "Blake," "eats," and "pizza." Each page contains a setence. "Mommy eats pizza." "Blake eats pizza." "Daddy eats pizza." "Adrian eats pizza." I added pictures and he loves reading it because he can do it independently.

Finally, we are watching videos, playing games and reading books that emphasise the sounds of words. Sesame street, other phonics videos, the Dr. Seuss's ABC book, and Leap Frog letter are just a few of the tools we use. We also sort words by the letter they start with using the word cards. I constantly ask, "what sound does this letter make?"

We practice sounding out words, getting faster and faster to form a word. Yesterday, he sounded out the words "Sam" independently without hints from me. "Ssss"..."aaaa"..."mmmm," "Ss.aa.mm," "Sam!"

Pure heaven for mom. :)

Handwriting without Tears to Teach Handwriting to Children with Down Syndrome

2010-06-08T15:53:00.000-07:00

We began using the Handwriting Without Tears Program to teach Blake and Adrian handwriting in May of 2010. They were supposed to be using it at school, but hadn't been consistent with it. The program is highly recommended for children with Down syndrome. An private OT evaluation at the local children's hospital of their handwriting indicated that they could be doing much better in this area. So, I was happy with the progress they made using it after only a few weeks.

This is how I implemented it at home:

Blake works at the kindergarten level and Adrian works at the pre-Kindergarten level.
I purchased the teachers guide and workbook for both levels.
I also purchased the wood blocks and mat for making letters out of wood pieces.
Before we started, I copied the entire workbook. This way we can do some sheets more than once if necessary. Also, it will keep me from having to buy another workbook when Adrian reaches the Kindergarten level.
I use a rubber band to keep the copied worksheets together with the teachers manual. Each day we flip to the current page in the workbook. We begin by building the letter with the wood pieces according to the instructions on the worksheet. Next, I hand-over-hand show them how to make the letters. I consult the teaching manual to ensure I am saying the correct words as they make the letter. This is very important. For example, as we make an "a," we say, "Magic c. Up like a helicopter. Bump back down."

Getting Started Homeschooling

2010-05-22T12:23:00.000-07:00

When I decided to homeschool my boys with Down syndrome, I thought I was prepared, but there is a lot to do. The first thing for anyone considering homeschooling would be to check the laws in your state about the notification that should be given to the school about withdrawing your children and what is required to homeschool. Here is a website that can help you with that, once you choose your state, it will tell you the requirements. http://www.hslda.org/laws/default.asp In my state, I simply notified the school and filed my home as a private school with our state department of education.

Now, here is the tricky part, figuring out what to teach each day. There are so many different ways to go about this:

1. Look at the child's IEP goals and present level of performance (PLEP) in the IEP if you trust the IEP.

2. Look at the worksheets from school to see what your child has been studying at school.

3. Quiz your child yourself, to get a feel for their current academic level.

4. Print off your state's guidelines for grade levels in their range of performance. look to see what goals they currently need to work on. I went to my state department of education website and printed the Kindergarten and 1st grade benchmarks. Anything from Kindergarten that they haven't fully grasped we will be working on, plus some skills from 1st grade that I feel they are prepared to handle.

5. Find a textbook that you want to work from and do each lesson in order from the book. (This is probably the easiest method.)

6. Make an outline of what you want to work toward educationally (goals). Introduce your child to some activities that work toward those goals. Math games, handwriting worksheets, books for reading. Next, let them decide what they want to work on each day from the options available. This may be the least stressful for all and the children get to work on what they WANT to learn, which aids in the learning process. I tried boxes. For example, each of the boys has a math, reading, and handwriting box. They can choose activities from the box each day. The activities currently include work sheets, books, and educational games I made from the "Teaching People with Down Syndrome" books.

Games to Help Children with Down Syndrome Learn About Money

2010-05-20T18:30:00.000-07:00

In the book, "Teaching Math to Children with Down Syndrome," there is a game called earn and pay. It works a little like Payday. Since you make the game yourself, you can adapt it many ways. We copied the game board in the book and pasted it to a thin piece of cardboard. The game board consists of a start/finish box in one corner. The remainder of the boxes that go around the outside of the board are full of ways that a player has earned or paid money. For example, "you earned money babysitting," or "you paid money to go bowling."

After you land on the box and determine if you EARN or PAY, then you draw an EARN or PAY card from the center of the board. The earn and pay cards I photo copied from the book contain amounts between $1 and $40. My boys can not yet count by 5's or 10's and counting out 40 $1.00 bills can be a bit cumbersome, so I was considering removing all the cards with amounts over $10, until the boys learn to count by 5's and 10's.

We printed our own money for the game from Free Printable Fun for free. The play bills worked well because they are the perfect size. We are currently only using the $1 and $5 bills.

We currently use a spinner, because my youngest child with down syndrome is still learning to identify numbers (1-6). After he gets this down, I'm going to switch to dice in hopes that it will help the boys learn to spot numbers on the dice by memory without having to count them each time. This is another concept from the book referred to as "visual spotting," on page 90.

Bingo for Number Recognition

2010-05-08T13:10:00.000-07:00

Another game to reinforce number recognition in kids with Down syndrome is bingo. You can purchase bingo sets or make your own bingo boards on your computer. If you make your own bingo boards, you can customize them with the range of numbers that you are hoping to use. For example, if your child is working on 1-20, you can select only numbers 1-20 for the bingo board. If your child is knows numbers 1-100, then you can broaden the range to include many more options. An interesting thing about bingo boards that you might not have noticed is that they frequently working in groups of numbers, for example the column under "B" might include 0-9, the column under "I" might include 10-19, etc.

Also, consider the following games for reinforcing number recognition at home:
Go Fish, Uno, Crazy Eights and Yahtzee. Blake and Adrian love these games!

All of these games are recommended by Deanna Horstmeier, in her book, "Teaching Math to People with Down Syndrome." She also recommends Monopoly Junior, Skip Bo and the computer game Cards for Kids.

Dot to Dot, Number Recognition Basketball and Hop Scotch: Math Skills for Kids with Down Syndrome

2010-05-07T14:16:00.001-07:00

Blake is 9 and can count to 100. Today, I've been working with him on math trying to get a feel for his current skill level to do school work at home over the summer. I learned that although he counts well and enjoys counting objects and matching numbers, he does not like sequencing as in a dot to dot page. He began giving intentional wrong answers to what comes next and we quit after a few tears.

We tried some other math games from the book "Teaching Math to Children with Down Syndrome," including hop scotch where they have to say the number as they hop on it and number basketball. The number basketball is a number recognition game where you print the numbers the kids are learning on index cards. Cut them in the shapes of balls. Throw them around on the floor. Ask the child to find the number "56," for example. (The numbers can be in whatever range your child is working.) When the child finds it they can throw, shoot or dunk the ball into a basket you have set up for them. If the child has trouble finding the number, there may be too many on the floor, limit the number of possibilities.

Both number basketball and hop scotch are active games for learning numbers and both Blake and Adrian enjoy these more than worksheets! Put another way, they were doing school work and having fun at the same time. No tears! After we finished the games, I went back to a smaller version of the "dot to dot" worksheet 1-10. We got through it fine, without tears that time. I have a feeling it dot-to-dot will never be a favorite though.

Something else we are working on in math is counting objects and matching the group of objects with the correct number. Adrian (age 8) counts well but doesn't identify numbers to match to the group. He knows he counted 1-5 objects and that means there are "5," but he can't always remember what number 5 looks like. For that, I learned that they should draw the numbers from the dots (like dice) repetitively. We also got the book "Addition the Fun Way: A picture Method of Learning the Addition Facts," by Judy Liautaud. We will also be doing hand writing without tears over the summer.

For Blake this summer we are going to work on counting two groups (a group of 5 and a group of 4 make 9) to move toward addition and subtraction. I know they've been doing adding and subtracting with him on the calculator this past year.

Matching a Number Symbol with A Counted Group of Items: Math Lesson for Children with Down Syndrome

2010-05-07T12:18:00.000-07:00

This is a game to help children with down syndrome identify the number symbol (written on an index card) with a given number of items that the child has counted. For example, matching the number "5" with a group of 5 counted paper clips.

Write the numbers 1-5 on large index cards.
Ask the child to say the number on the first index card.
After the child says for example, "two," have the child place that many clothes pins on the card.
If the child has difficulty understanding the game at first, help them count the number of clothes pins on the card. The child will soon understand that the card with the printed "5" should have 5 clothes pins.

This is also a good opportunity to practice fine motor skills. In addition to clothes pins, consider paper clips, staples or any other fine motor skill that you are helping the child to develop.

This game would be similar to a worksheet that requires counting and then matching the number of items, or objects, to a number. (Ex: 5 cars matched to a number 5.) However, it teaches hands-on application of counting and matching.

Potty Training

2010-05-07T08:06:00.000-07:00

We potty trained Blake, my son with down syndrome, at age 2 with the help of a behavioral psychologist that gave us tips for teaching them to use the potty.

Log the time that the child soils the diaper
After a week you will have a general idea of the "routine."
Place the child on the potty chair during these times (up to 20 minutes surrounding and give them lots to do.. read a book, talk, sing, etc.
When the deed is finally done in the potty chair praise them extensively, so they will know they have achieved the goal and do it again.

We toilet trained Adrian the same way after he got settled in and adjusted to our home, around age 3. He still wets the bed at night, so we have always worn pull ups at night. The environmentalist in me chose these chlorine-free and fragrance-free nighttime pull ups. They are less likely to cause skin rashes in addition to being environmentally friendlier. I got them by the case at Amazon.com. I subscribed to the auto-shipments every 3 months to get a discount.
Adrian is 8 now and we are still having accidents at night. At the advice of the same children's psychologist that advised me on potty training before, we have moved to cloth pull ups at night. They feel "wetter." They are more eco-friendly too, because they are reusable. No waste! I guess, I was worried about cloth leaking on the mattress, but I found these waterproof cloth undies called "Potty Scotty" that are wonderful. They don't leak at all!!! They are affordable and unlike the disposables, you only have to buy them once.

These are the "waterproof" variety. I bought some Potty Scotty regular training pants and doubled them up at night, so he wears the cloth under the waterproof. Seriously, he doesn't leak at all! :)

The other tips recommended to eliminate wetting at night for my youngest son with down syndrome were:

Make sure he goes to the bathroom just before bed.
No liquid an hour for bed.
Praise him when he has a dry night.

If this doesn't work we will consider a bed wetting alarm, but he has already had many dry nights! Good luck potty training your child with down syndrome!

Organization and Checklists for Medical Care and Development

2010-04-30T09:31:00.000-07:00

Most parents of infants with down syndrome have a lot of questions about their child's future abilities. I know that I did! I asked professionals often in Blake's first year what he would be to achieve. The best advice I ever got was, "he will accomplish everything most children accomplish. He will just do it at a slower pace." There is a lot of wisdom in that statement. I recently read that expressive language development continues throughout adulthood for people with DS. Speech and speaking is often the weakest area for people with DS, but they continue to make progress in this area for a loooong time.

There are some important issues here that I see for parents:
1) You will have many goals for your child that you feel responsible to help them achieve.
2) They will do it slower than other children.
3) Be grateful for the extra time, as parents of children with down syndrome can get overwhelmed, you will sometimes lose sight of your goals and rediscover them at a later time.
4) Checklists and organization are your friend. I often find myself rediscovering goals I had from the past and thinking, "Oh, I had plans to use this game to teach this, or that, fine motor skill." Checklists will help you get back on track with your goals.

Medical Organization for a Child with Down Syndrome
In the early years of down syndrome, most parents are busy with medical issues. At the time it seems never ending, but for us we were blessed to have most of them overcome by age 5. During the time of many medical issues, help yourself by keeping a medical journal! Always ask for copies of medical reports after a visit. Keep a small log in the front of the medical journal with the date and reason for the appointment or surgery. This way you have a quick view of the medical care right in the front to help answer questions asked by medical professionals. You will likely be the source of information for all your child's health concerns treated by many specialists.

Developmental Goals for a Child with Down Syndrome
The books published by Woodbine House for children with down syndrome, "Fine Motor Skills in Children with Down Syndrome," "Gross Motor Skills in Children with Down Syndrome," Teaching Math to Children with Down Syndrome," and "Teaching Reading to Children with Down Syndrome," just to name a few, will help new parents discover what to expect from their child with down syndrome at various age levels. Don't get sucked into the idea that your child can't achieve milestones sooner, but these books provide checklists that will help to see where your child is developmentally in a given area (OT, PT, ST, Math, Reading, etc.) and help you to discover where you need to go next. I find these checklists incredible valuable.

If at some point you realize that you put the book away and forgot to work on OT with your child, simply pick it up and go through the skills checklist. Rediscover where your child is at developmentally and pick up at the child's current skill level. Parents will get busy, from time to time, but that doesn't mean you can't keep working toward your goals as you find the time. Once you have identified your child's current developmental level, the books provide practical ideas for helping the child progress to the next level.

Grieving after the birth of an infant with down syndrome

2010-04-30T06:57:00.000-07:00

I recently read the book, "Gifts." It is a collection of stories from mothers about the birth of their child with down syndrome. The book has reflections from moms that knew their child would have DS. It also has stories from moms that did not know until the infant was born. As I read it, I was grateful that the book did not fail to acknowledge the grieving process that naturally occurs after the birth of a child with DS.

Grieving is a critical step that shouldn't be underestimated. Many parents of children with down syndrome feel ashamed to admit that they grieved, feeling that if you say this outloud it indicates you don't love your child. On the contrary, if you plan to deal with the birth of a child with a medical concern or birth defect successfully, you must grieve. If you don't grieve you will not get to the next step which is acceptance. Accepting your child with down syndrome for their differences, learning delays, and potential health problems is what moves us on to being exceptional parents. It is important to grieve the loss and then bounce back and move on! We can't begin to support, nurture and advocate for our children until we accept their differences, learn about them, and embrace them.

There is a principle in psychology that everyone needs to feel that they belong and fit in socially. Parents who have given birth to a child with down syndrome will struggle to regain perspective on how they fit in socially and whether their new child is accepted. For a short time after the birth, it is normal to feel very isolated and different. It is normal to feel that nobody understands.

Parents will eventually learn of others that share the same experience... the birth of a child with down syndrome, the love of a sibling with down syndrome, or a family friend with down syndrome. Those people are so important to helping new parents! The most likely way to overcome those feelings of isolation and being different is to reach out to others that have had the same experience.

When my biological child with down syndrome was about 3 years old, I called one of the family support groups that had provided me with information on down syndrome when my son was born. I asked them about giving my name to new parents of children with down syndrome. They said, "We don't do that. We get asked that all the time, but we send out materials and don't do parent matching." I asked if there was a family support group in our area. I was told "yes," but then later told that they didn't have regular meetings.

The reason that this group gets asked all the time for parent names or networking, is because new parents desperately need the service! Unfortunately, in many rural areas this still isn't being provided. In my case an unlikely person helped me. I say "unlikely" because it wasn't her job to work with children or families with disabilities, but she was an incredible source of help to me anyway.

After asking many professionals, and coming up empty handed, I finally asked the teacher from the local "Parents as Teachers" program. She gave me names and email addresses of other parents she knew personally that had children with down syndrome. I was so grateful for these names and to her.

There are email lists online also. If you are the parent of an infant with down syndrome, join the "UpsNDowns" list. You can google it and find it easily. If you prefer to find local families in your situation, keep asking professionals until you find the support you need. If you live in a rural area, you may need to start one yourself.

Sometimes I fear that in an effort to "include" our children with down syndrome, we have taken away from a family's natural need to meet other individuals and families with down syndrome. Yes, we need to include them in mainstream society, but it is important that groups for children with down syndrome still exist. Individuals and families need this support and they need it most in the beginning after having and grieving for their newborn with down syndrome.

Inclusion for Children with Down Syndrome in the Mainstream Classroom

2010-04-30T06:22:00.001-07:00

Inclusion done correctly can have so many benefits for a child with down syndrome. They are able to be in the classroom with their peers and they accomplish more academically. Here are some things you might want to consider if your child is just beginning in an inclusive school setting.

Inclusion for Children with Down Syndrome in the Mainstream Classroom

Inclusion for Children with Down Syndrome in the Mainstream Classroom

2010-04-30T06:22:00.000-07:00

Inclusion done correctly can have so many benefits for a child with down syndrome. They are able to be in the classroom with their peers and they accomplish more academically. One of the dangers is inclusion that isn't truly inclusion. To put it another way, having your child in the regular classroom, but having them working complete different work, rather than a modified lesson plan. Also, there may be a requirement for other modifications in the classroom that you haven't considered.

Inclusion for Children with Down Syndrome in the Mainstream Classroom

Septal Heart Defects in Infants with Down Syndrome

2010-04-23T09:10:00.000-07:00

Forty-five percent of newborns with down syndrome suffer from a heart defect. A septal defect is the most common type of heart defect. The risk of a potential heart defect is quite high for newborns with down syndrome. According to the American Heart Association, less than one percent of newborns suffer from heart defects. However, for newborns with down syndrome the incidence rises to forty-five percent, making heart defects a serious health concern and common occurrence.

What is a Septal Heart Defect?

Blake's Story - The finally Chapter - Part 6

2010-04-12T12:40:00.000-07:00

Blake is 4 now and at this point we have 4 diagnosis’s (Reflux disease, asthma, dysphasia, and tracheomalachia). Blake is in preschool.

Things were better in that no new medical problems cropped up and we seemed to have the existing ones under control. Blake took Prevacid and used thick-it for a year. I was a little concerned about the fact that we had Blake on a PPI that hadn’t been studied for long-term use in children, but we were taking it that way.

Finally, one day in a routine visit to Blake’s gastrointerologist (stomach specialist I had requested hoping to learn more about the reflux diagnosis) he suggested an upper GI. Before I get to the upper GI, let me tell you this gastrointerologist and I didn’t have a great relationship. I bugged him a lot, hoping to find answers. He threw accusations at me about feeding my son poorly and being responsible for his medical problems. I began to scrutinize everthing Blake ate as a result and finally that blessed day arrived when Dr. San Pablo suggested the right test… an upper GI.

Dr San Pablo, the GI doctor with a terrible bed-side manner that viewed me as neurotic saved my son’s life. He said he would do an upper GI and found that Blake had a vascular ring. This is the 5th and last diagnosis we ever needed because it resolved everything. You see the other diagnosis’s were simply symptoms of a much bigger problem which was uncovered in the upper GI.

I learned that vascular rings cause difficulty swallowing, difficulty breathing, and can cause reflux. It is a condition where the aorta actually wraps around the trachea and the esophagus. People are born with vascular rings. Some people begin having symptoms as they age and the aorta tightens around the trachea and esophagus, other people may never have symptoms from it.

Blake’s vascular ring, the ring of his aorta wrapped around his trachea and esophagus was squeezing them both tight enough to cause all these problems. No wonder they kept getting worse as he grow older! This might sound odd, but I was overjoyed. I had finally figured out what had gone wrong. Not only that, but a vascular ring can be repaired. After getting the test results, I immediately asked when we could schedule surgery. Looking back now, I realize that if I had said, "yes," to the bronchoscopy offered by the pediatrician it would have uncovered this condition sooner. The narrow spot where his aorta was squeezing his trachea would have been seen in this test. I say this in case anyone reading this is dealing with a similar situation.

The surgery to repair the vascular ring was done just before Blake turned 5 years-old. He is 9 now and he doesn't have reflux, asthma, dysphagia, or difficulty breathing anymore. In fact, he never gets sick! He can drink liquids without aspirating them and he doesn't need thick-it anymore. Life is good!

I still can't speak or write about those days without crying. Back then, I was afraid Blake would die. I write this for anyone struggling with the same symptoms. It took me a few years to get the right medical assistance to help my son. I am eternally grateful to the children's hospital and to Dr. San Pablo, the GI specialist, with the poor bed-side manner that finally diagnosed him and saved my son‘s life.

Blake's Story - Part 5

2010-04-05T12:15:00.000-07:00

When I think back at this time of my son's life, before preschool, I picture him wheezing and me a little frantic and neurotic because we weren't getting any resolution to his chronic breathing problems. We had an appointment at a local children's hospital at the Down Syndrome Clinic. I remembered an OT there at the clinic from the time of Blake's birth. She had struck me as very caring and concerned. Her name was Connie Chesser. Today, she was seeing him at the DS clinic to see if we had any occupational therapy concerns.

I mentioned to her Blake's breathing problems and she suggested we have a "swallow study" done. She went on to explain that some kids have difficulty swallowing liquids and that the liquid will go done the wrong way (into their airway). The swallow study traces the liquid through their throat, so they can actually see where it goes. We had the test done as she suggested. We watched fluids go down Blake's throat as he swallowed. It went down both ways. In to his esophagus (stomach) and into his trachea (lungs). Blake was diagnosed with dysphagia. His forth diagnosis to add to the list:

1. asthma
2. tracheomalacia
3. reflux disease
4. and now dysphagia

Dysphagia, in other words, he was inhaling liquids into his lungs when he swallowed them, hence, the coughing when he drank. This is not a common condition, in fact, many medical professionals confuse it with dysphasia when you talk about it, which is difficulty speaking, rather than swallowing. Another name for it is pulmonary aspiration, or inhaling fluids into the lungs. The medical staff explained to me that it is caused by lack of sensitivity in the throat. The flap in your throat that determines where liquid should go and where air should go not working properly. Stroke victims sometimes suffer from aspiration and I have read that it can be so serious that people begin inhaling food (not just drinks).

My son was adding to his list of diagnosises quickly, but I couldn't understand it because he seemed to be going downhill fast. He had not always suffered from these conditions.

What to do? They prescribed a substance called "thick-it." I was told to put it in all my son's drinks until they were the thickness of honey, so that they were thick enough to not be breathed into his lungs. I was a nervous wreck at this point. I could not figure out what had gone so terribly wrong with my son. Most of the medical professionals I spoke to assumed his condition resulted from his down syndrome, but I knew that he had not always had this problem and that things were getting worse. I left my job as a tax auditor for the state of Kansas and began staying home with my son full-time. I was told that my son would never be able to drink liquid without thick-it in it. He would never walk downtown with his friends and buy a can of soda.

Blake's Story - Part 4

2010-03-29T12:05:00.000-07:00

At this point in Blake's life he had been diagnosed with asthma and tracheomalacia. For the asthma we were using a nebulizer that helps him inhale medication when he is having trouble breathing. For the tracheomalacia, I'd been told we could do a bronchoscopy, but that it would be painful for him and probably wouldn't reveal much.

The next symptom I noticed in my son was swallowing for no reason. He was 3 and his breath smelled bad a lot. I would see him swallowing when he wasn't eating anything. I asked my doctor about it and he suggested a pH probe. A PH probe is a test done for acid reflux disease. Ah, another medical term to learn. I read up on gastroesophageal reflux disease, or GERD, and learned a lot of things:
1) It can cause asthma if it becomes severe
2) It can desensitize the airway and cause swallowing problems
3) You can avoid it with diet
4) They can medicate you for it

Most of the time pediatricians will prescribe an H2 blocker for GERD in children. Zantac, Pepcid, and Tagamet are all types of H2 blockers. They start with H2 blockers and then if it doesn't work they will add a prokinetic to make the lower esophageal sphincter muscle close tighter. This prevents the acid from coming back up into the esophagus. The pH probe came back positive in Blake for acid relfux disease. The H2 blocker (Zantac) didn't help him. The doctor prescribed a prokinetic (Reglan). I found Reglan causes seizures! It is a common side effect.

I asked the doctor to try a proton pump inhibitor instead, also known as PPIs. PPI's are newer drugs that are commonly prescribed for adults. They are Nexium, Prevacid and Prilosec. In fact, you can now get them without a prescription. A little online research will tell you these drugs have had limited testing for long term use (have very limited testing in children), but they will stop acid reflux quickly. The PPI's did stop Blake's reflux, but he still had breathing problems that were so bad at night I feared he would stop breathing. (Asthma and tracheomalacia.)

Blake's Story - Part 3

2010-03-22T11:55:00.000-07:00

Part 3

As I finished up part 2 of Blake's story, I mentioned that he was having breathing problems that my regular doctor could not resolve. I finally asked for a referral to an ENT. When we saw the ENT, he looked at my son's throat and quickly told us my son was fine. I had brought with me a recording of my son's breathing at it's worst and played it for the ENT. The ENT responded that he could do surgery if that is what we wanted. I walked out wondering exactly what he planned to operate on if he thought my son was fine. Very odd.

I changed pediatricians hoping to get some help. As I described my son's breathing to our new pediatrician, he said, "Oh, that is tracheomalacia." Interesting. Tracheomalacia is the partial collapsing of the trachea when a person breaths. It was a good diagnosis. The most solid diagnosis I had gotten because I had never been comfortable with my son's breathing problems being simply "asthma." It seemed like much more than that. I asked what could be done about tracheomalacia and this is where I made a bad decision. The doctor responded that we could do a bronchoscopy, which is where they push an instrument through the nose, or mouth, and into the airway to view the trachea and airways. I asked if it would be painful. He said, "yes." I said I would pass. He then ended the visit by telling me that my son, who had down syndrome as well, had a weak, floppy trachea. You see people with down syndrome have hypotonia (weak, floppy muscles).

Later after the doctor visit, I got on a forum for parents of children with down syndrome to tell my story. I asked about other parent's experience with breathing problems such as this. Nobody seemed to have any. One parent said, "I've never heard of the low-tone (floppiness) being applied to the trachea instead of muscles." Interesting. But, now what?

Homeschooling a Child with Down Syndrome

2010-03-15T17:37:00.000-07:00

To homeschool a child with down syndrome, there are two must have books that you should know about Teaching Math to a Child with Down Syndrome and Teaching Reading to a Child with Down Syndrome. Both of these books are published by Woodbine House.

It is important to remember that children with down syndrome learn much like other children, they will learn all the same skills and curriculum in their own time. However, children with down syndrome tend to be visual learner. In addition, there are some techniques in these books that are proven to work when traditional learning methods don't work. Therefore, any parent hoping to homeschool their child should at least consult these books occasionally for ideas when a child gets stuck on a particular learning concept. The books may contain methods that can help them over the learning hump.

As I mentioned, statistically speaking kids with down syndrome tend to be visual learners. Of my two kids with DS one is a visual learner and one is not. The child that is not a visual learner can count and recite his alphabet, but he struggles to identify letters and numbers when they are out of order. For this, we have recently begun tactile learning of the letters and numbers, tracing them on rough surfaces, such as sandpaper, beans, foam, and bubble wrap. For more information on tactile learning check out: How to Make Tactile Alphabet Letters for Learning

Home Schooling this Summer

2010-03-15T08:00:00.000-07:00

Under an IEP, you must show that a child regresses educationally during the summer if they do not have summer classes. My school is fond of saying, "we don't do summer school." Legally, the logic is a bit flawed because under the law they are required to do whatever the child needs, not whatever they normally do. However, I am looking forward to having the boys home this summer. I have been thinking of some educational activities for summer. I pulled out "Teaching Reading to a Child with Down Syndrome," and "Teaching Math to a Child with Down Syndrome." They are such amazing resources.

First, I skimmed through the books activities. Then I quizzed the boys a bit to see what they were ready for and what they had already mastered. I located a place in the lesson plans to begin with each. Over the next few months I will get my worksheets, flash cards, and other materials ready by copying them from the book or purchasing them.

Great Wolf Lodge

2010-03-10T17:18:00.001-08:00

Last week we took a trip to Great Wolf Lodge. It was a lot of fun and the boys were at just the right age to fully enjoy it. They were nearing being too tall for some of the slides, but were not quite there. Also, at ages 8 and 9 they were able to ride everything there without being afraid.

We don't actually spend a lot of time in chlorinated water, as both the boys had asthma when they were younger and chlorine aggravates asthma. This week they are both indeed ill. It could be from spending the day in a chlorinated pool, but it could just be a coincidence.

Blake rode one of the very long slides with Steve. Adrian and I went through first. As soon as we hit the darkness, I thought, "Oh no, Blake and Steve are in trouble." After reaching the bottom, I waited for Blake and Steve to arrive expecting to hear shrieks of terror from Blake at any moment. He is terrified of strange, dark places. No shrieks of terror occurred. After they came out Blake looked a little disoriented, but not terrified, so we went down again. :)

Is it Asthma? Blake's Story - Part 2

2010-03-03T11:26:00.001-08:00

Part 2

I arrived home from work one evening expecting to go to my oldest son's basketball game that night. My husband was in the kitchen with our boys. I could hear my 3-year-old breathing before I opened the door. It was loud and labored breathing. That type of breathing had gotten my son diagnosed with asthma. The medication worked short-term, but overall his breathing seemed to be getting worse and occurring more often. My husband mentioned going to the game. I responded that we couldn't take our 3-year-old, Blake, when he was breathing like that. I would stay home with him.

It was around this same time I had began to notice Blake coughing when he drank. Sometimes, he would laugh afterward, so I thought he was doing it on purpose. My babysitter sat him on the kitchen counter one day and said, "watch," as she gave him a glass of milk. He coughed as he drank it. "Oh, he does that on purpose," I responded. I wasn't sure if I was reassuring her, or myself.

My son's frequent breathing problems were causing me to miss a lot of work, so I took him often to our pediatrician hoping to get some help. Our pediatrician suggested changing his asthma medications, some did work better than others when he had flare-ups, but there didn't seem to be any lasting relief for the big problem, which was that his breathing was getting worse over time. It was always worse at night also, when there was no doctor near. Some nights I feared he would stop breathing. I asked for a referral to an ENT.

2010-02-27T07:20:00.000-08:00

Blake's Reflux Diagnosis (Part 1)

2010-02-26T06:53:00.001-08:00

I learned about reflux when my 3-year-old with Down Syndrome was diagnosed. Three is actually an odd age for learning a child has reflux. Most babies who have reflux at birth, outgrow it when they begin to walk. It is also common for people to develop reflux in middle-age years because being overweight can contribute to reflux.

But, Blake developed his first symptoms of reflux as asthma, stridorous breathing, and finally coughing while drinking. They did a PH probe to diagnose the reflux and then soon after diagnosed him with something called “dysphagia,” or difficulty swallowing. This shouldn‘t be confused with dysphaSia which is difficulty speaking. I found that medical professionals often confused the two terms when I spoke of them. Perhaps because they sound so much alike.

In serious cases of gastro esophageal reflux disease (GERD), asthma, labored breathing, and difficulty swallowing can develop. The symptoms are actually caused by the GERD. Funny thing is about my son’s reflux though is that he never puked. I would see him swallow sometimes, shortly before I requested the PH test from my doctor, but there was never any noticeable sign that he was refluxing accept the swallowing.

The PH probe, or test, confirmed that he did in fact have reflux. At the time, I was very grateful for the reflux meds which kept things from getting worse. Today, I am happy to say that my son is completely cured. We no longer need reflux medication. That is why I write about natural cures and remedies for reflux. I hope to share what I learned and our success with others.

Teaching Reading to Children with Down Syndrome

2010-02-10T19:08:00.000-08:00

Two years ago, I began using the program outlined in Woodbine House's "Teaching Reading to a Child with Down Syndrome," to teach Blake to read. It was summertime and at the end of the summer I showed the paras and special education teacher at his school what we had been working on. The program is briefly described here: How to Teach Reading to a Child with Down Syndrome.

The school continued the program with him and implemented some of their own program also. I am happy to say that at the age of 9 he is reading BOOKS! Most of the books are picture books and I worry sometimes that he is "cheating" by looking at the pictures. But, today I pulled out some of the beginning word cards that he used 2 years ago and showed him words with no pictures. (He had not seen these cards for at least a year as we had moved on to other words.) He identified all of them free of photos... "apple, mom, play, etc." I am so excited that he is a reader. :)

Polar Plunge

2010-02-01T08:31:00.000-08:00

Recently, our area hosted it's annual Polar Plunge. The proceeds from the plunge go to the Special Olympics. When I first heard of the Polar Plunge, I wondered how they keep people from going into cardiac arrest by diving into water that cold. Apparently, the participants wade into the water at a swimming beach. Ours is hosted at a nearby lake. So, there is no actual "plunge," but it is a great cause and a lot of fun to watch. To find a Polar Plunge near you, and support the Special Olympics visit: SpecialOlympics.org

Inclusion or Homeschool Tips for Teaching Kids with Ds

2010-01-14T19:25:00.000-08:00

At the beginning of this year, I had a lot of reason to research education of children with Down syndrome. I was making a lot of big decisions about my own children's future education and I was beginning to homeschool one of them. I've been reading books about educating them, since the day they were born to help teach them at home, but as a new homeschooling mom I needed to know that I had the skills to make homeschooling work. I came up with 5 critical elements to teaching kids with Ds:

Focusing on Visual Learning

Using Hands-on Activities

Making Lessons Relate to Life Experience

Minimizing Fine Motor Demands

Use Short and Long Term Memory Aids

Shorten Assignments or Break Them Down into Smaller Tasks

Tracking Doctors Visits and Medical Appointments for Children with Down Syndrome

2010-01-13T12:17:00.000-08:00

New parents of a baby with down syndrome should know that the most critical challenge you will face is the variety of medical conditions that children with down syndrome are prone to have. Heart problems, reflux, loose joints, hypothyroidism, are just a few of the common conditions. To be a strong medical advocate for your child, it will be helpful to have well organized information about their medical history. Today, I designed a webpage which outlines how to organize all the medical information and screenings required into a medical journal for your child. It will help you and help the professionals that work with your child.

Medical Care of Children with Down Syndrome

There are some books, sources of medical equipment, and other resources on the webpage as well. I hope that it helps someone.

Zippers and Shoelaces

2010-01-05T15:06:00.000-08:00

One morning we were headed out the door on the way to school and I became aware that neither of my children had their coats zipped. I know what you are thinking... "How can you not notice your child isn't zipping his coat on his own?" Well, maybe it's because our winter is colder than normal this year, or maybe it is because my boys WERE zipping their coats last school year and stopped for some reason. I vividly recall their paras at school telling me they were working on zipping. But, this year it just isn't happening. They do a great job once the zipper is in the slot and started, but getting it started, well that is another story.

I consulted my book Fine Motor Skills in Children with Down Syndrome. It says to have them sit and try to get the zipper started, or simply try any position that allows them to reach it. Bending over and looking past their bellies and the bulky coat seems to be the biggest obstacle. The book also notes that their are coats made with alternative fasteners for those that never master zippers. Tomorrow we will try sitting and see how the zipping goes.

Also, for those reading this that don't know "fine motor skills" are small movements usually done with the hands, these skills are worked on by occupational therapists. They are the opposite of "large motor skills" which usually have to do with the legs, running, kicking, biking, etc. These skills are worked on by "physical therapists." Kids with down syndrome should be getting therapy from each of these people weekly from the day they are born. It can help them throughout their life. In addition to the book listed above for fine motor skills, Woodbine house makes a large variety of books that cover life skills specifically for the needs of children with down syndrome.

As for shoes, I am happy they make velcro. My mother made us books as a child that allowed us to practice over and over tying, snapping, buttoning, etc. I have big plans to make one for the boys and we will see how that goes. But, like the zippers, shoe tying has a special needs alternative, which is of course velcro shoes.

Update:
We tried sitting to zip the coats sitting down today. Adrian had to much coat between him and his zipper. The chair didn't help. Blake didn't seem to understand that the zipper had to stay at the bottom until the other half was in place. He needs some practice.
Next goals:
1)Get Adrian a shorter coat (the one he has is too long to get a good look at the zipper.)
2)Help Blake practice with zippers.

2010 New Year Resolution

2010-01-03T11:26:00.001-08:00

In 2010, I pledge to donate all profits from this blog to the National Down Syndrome Society. NDSS is the leading organization for DS education, research and advocacy.

Happy New Year!

Heather

Prenatal Testing for Down Syndrome

2009-11-15T08:55:00.000-08:00

I wrote an article today about prenatal testing for down syndrome and other fetal anomalies, such as spinabifida and trisomy 18. When I was fact checking the time of pregnancy that amnio results typically are returned to the parents (week 16 through 20) it occurred to me just how very pregnant that is (4th month).

I was one of the 20 percent of moms that had the amnio done and chose not to abort. We did the amnio, under the advice of our physician, to "comfort us that there was nothing wrong." I didn't not realize there was an increased risk of spontaneous abortion. (Yeah, I was that dumb about it. )

By the time we got the news our baby would have down syndrome, I was almost to my 5th month of pregnancy, no longer able to fit into my regular clothes and was very obviously pregnant. I had felt my baby move inside me. Twenty weeks is very late in the pregnancy to be informed of an anomaly. I guess that's why it continues to shock me that the statistic for abortion after amnio is so high (80 percent).

I am Thankful for Dandelions

2009-11-08T13:45:00.000-08:00

I do not know if it is hereditary, or a learned behavior, but each of my boys in their early elementary school years have brought me dandelions from the yard. My boys with down syndrome are no different. They bring me dandelions too. I have never beheld such a beautiful flower. Seeing my young boys stand before me, proud and posed, extending a dandelion gift is one of my favorite memories in life.

Today, at church, the children left the sermon to prepare for a Christmas program. They must have gone outside, because when they returned to the pew my 9-year-old, Blake, produced his dandelion harvest to me. With Thanksgiving just around the corner and this being a time of thanks, I would just like to say, I am thankful for my boys.... and for dandelions.

2009-11-07T16:24:00.000-08:00

In a mad dash for Halloween costumes this year, I went to the thrift shop downtown the day before Halloween!

Costume 1: a football uniform with pads and helmet. This was a great find, because I knew it would get used again and again throughout the year. Both boys love football, but can't really play due to the instability in their neck (AAI). They do watch it on television and have many football shirts though.

Costume 2: a wizard with black robe and pointy hat. This was a reasonably priced costume in the right size. I wasn't sure what the boys would think of it. They must have liked it well enough, because they took turns looking at themselves in the mirror, switching costumes, and looking at themselves in the mirror again.

Parents of Children with Down Syndrome as Advocates

2009-11-05T11:11:00.001-08:00

I recently read an article online entitled "How to Talk to Children about Down Syndrome." After reading the title, I envisioned several situations where a parent may need to do this:

Talking to classmates at school
Talking to siblings after diagnosis
Talking to new friends

There is a wonderful book called, "My Friend Isabelle," that will help with number 1 above, talking to classmates at school. The book is designed for children ages preschool - 1st grade.

However, the article I was reading did not address any of the situations I had in mind. In contrast, it went on to describe a situation where, "if you have a child with down syndrome in the family, there may come a time when you need to address the issue, either by explaining it to the child himself or to his brothers or sisters." It instructed that parents should go to medical professionals to get information. After reading this, I got an image in my mind. An image of parents so oblivious to the fact that their child has down syndrome that they never bothered to learn about it. That is until they must discuss it with a child, then they rush to get information from their doctor so they will know what to know what to say.

As a parent this idea is ludicrous to me, let me explain why....

When I was pregnant with my biological son, with down syndrome I prepared for his birth by reading. I read books to educate myself because frankly, I knew nothing. I learned that children with down syndrome have a 60% chance of being born with a heart problem. After his birth, our family doctor indicated he heard a murmur when checking Blake's heart, but said it would be fine.

At Blake's first check up, I told my doctor there was something very wrong with him. He was losing weight and breathing in a labored way that was odd to me. I knew from my reading this was indication of a heart problem. I also knew from having two babies before that the labored breathing in an infant was very unusual. My doctor said, "it is not unusual for children to lose weight after birth." I could not believe that he couldn't see what was so obvious to me....something was very wrong! He finally agreed to do an echocardiogram which indicated my son, like most kids with down syndrome, had a hole in his heart called a septal defect.

The cardiologist informed us that most kids can outgrow and heal from a septal defect, but it is rare for babies with down syndrome to recover without surgery. In fact, Blake was in congestive heart failure while we waited for him to become old enough to do the heart surgery. Each day was a struggle hoping he would make it to his operation. He had a special formula, feeding mechanism and medication to keep him alive until his surgery. Remember, this happens to more than half of children with down syndrome.

He recovered well from his heart surgery, but honestly the first few years of life with a child with down syndrome is a medical roller coaster. They are prone to many, many, many medical conditions, not just heart defects. Some family doctors that have not had patients with down syndrome, may not be aware of these medical risks.

As a parent of a child with down syndrome, you quickly learn to advocate for your child! I remember getting this advice from another parent while I was pregnant. She said, "As the mother of a child with down syndrome, you will need to advocate for your child." I had to look up "advocate" to see what she meant. :) Advocacy means speaking out in your child's behalf. I can tell you that as the parent of a child with down syndrome:
1. you must be strong
2. you must educate yourself well
3. you must speak out in your child's behalf often

At school, at the doctor, in everyday social situations, people who are not accustom to dealing with down syndrome will look to you, the parent, as a resource for information. You must know your child's medical history and needs well. You must know you child's educational needs well. You should strive to educate others to make a better world for your child daily. Living with any medical condition changes who you are and how you live. It becomes part of your life.

Mom Guilt

2009-11-02T09:45:00.001-08:00

I recently had the privilege of meeting a fellow eHow writer by the name of Gracie1402. She shared with me that she was working on a book called "Mom Guilt." She explained that as mothers we usually feel guilty for the decisions and choices we make for our children. If they are decisions we feel are right, we still fill guilty for any negative consequences that may come from our choices. Gracie1402 also spoke of her experience with Guillain Barre syndrome. Due to Guillain Barre syndrome, one of her children had become completely paralyzed for no known reason. Luckily, her child has completely recovered.

It was a timely conversation, because just before meeting her, I had written an eHow article entitled "How to Talk to Parents after a Diagnosis of Down Syndrome." In this article I focus on the first critical step of parenting a child with down syndrome, which is overcoming guilt. Education and learning the facts of DS is the first and most important step in overcoming the "mom guilt" that every mother feels during diagnosis. Hopefully this article will help parents during their first moments, so they can get past their guilt and begin parenting their child.

Development

2009-10-30T06:23:00.000-07:00

I remember wondering how much Blake would be able to accomplish when I looked at him as a baby. A retired Kindergarten teacher, working for the "Parents as Teachers" program came to our home and helped me during that time. I am very grateful for Betty Lewis and the time she devoted to me and my son.

I asked her repeatedly "What should I expect developmentally for him?" She always calmly answered, "He will do everything you and I do, it will just take longer." I do not know why that to so long for that to soak in.

I have found that my boys, both my bio son with down syndrome and my adopted son with down syndrome, function at half their age. They are 8 and 9 and they do the things a 5-year-old would do. They are excited about Halloween this year, love dogs, and love to push the buttons on the vending machine on the rare occasion that I let them buy soda. Yesterday, Blake reminded me that he was supposed to dress up as a doctor for school. The children were dressing as what they wanted to be when they were grown. :)

For any new parents reading this and wondering, "What will life be like with a child with Down Syndrome?" My answer to you is "They will do everything you and I do, it will just take longer."

The "R" Word: Down Syndrome and Social Prejudice

2009-10-28T11:39:00.000-07:00

In my email inbox today I received the story of Mike Bailey, a handsome boy that is also an excellent athlete in the Special Olympics. As I read his mother's account of giving birth to a child with down syndrome one sentence stuck out in my mind. "We didn't know what down syndrome was, so it was quite an eye opener."

I vividly recall the day I learned my biological son would be born with down syndrome. I didn't know what down syndrome was either. I remember asking my husband, "Does that mean he will be re...?" I never finished the word. I didn't understand at the time why that "r" word stuck in my throat, but I do now.

The mother of two exceptionally smart children, and being a bit of a book worm myself, I had come to value intelligence. Over the next few years, I would reevaluate the "people values" I had developed. I call them "people values" because they are not God's values. People values are money, intelligence, success, beauty, fame. I open my bible and I do not see the words of God valuing these things. Instead, I see that they can easily turn into sins. God values honesty, faith, hope, generosity and love.

I no longer feel shame in saying that my son is retarded. It is a measurement on an IQ test, not a measurement of the person he will become. Consider for a moment the following scenario:

Children are playing on a school ground. One child calls another an ethnic or a racial slur. A teacher would likely discipline this child. Imagine one child had called another a "retard." It is not unusually for this type of language to go undisciplined or unnoticed in today's society.

America, a country that prides itself on tolerance of individual differences, has been slow to notice that phrases like "retard" are a form of prejudice and intolerance. The word "retarded" in itself is not offensive. Unfortunately, it is all to often used as a derogatory remark. In the form of an insult, it is no better than a racial slur.

Introduction

2009-10-28T09:31:00.000-07:00

Hello,

My name is Heather and I am the proud mom of two boys with Down Syndrome. Blake is 9 years-old and I found out he would be born with DS in my second trimester of pregnancy. I was 30 years-old at the time. His diagnosis and birth was a life changing experience. I could not imagine life without him.

When Blake was 3 years old, I began the process of adopting a forth child. I fell in love with Adrian as soon as I found his photo online. I was soon able to bring Adrian home to live with us and Blake and Adrian became brothers and the best of friends. Adrian also has down syndrome.

They are 10 months apart and are in the same grade in elementary school. Each of my boys share some likenesses because of their disability, but have very different personalities. This blog is my chance celebrate the joys of raising children with down syndrome and also to share the challenges.

Parenting a Child with Down Syndrome

Highlights Free iPad Apps

iPad for Kids with Down Syndrome

1/19/12 - What We Did in School Today

Homeschool Adventures 1/13/12

You Can Easily Judge a Man's Character....

Zingo for Learning Numbers

Writing Numbers

Recognizing Numbers | Number Recognition

Homeschooling Schedules and Enjoying the Fall Weather

Patterning and Sequencing for Kids with Down Syndrome

Counting Past Ten for Children with Down Syndrome

Adding Coins

Long and Short Vowel Sounds

Calendar Skills

My Baby is 10!

CVC Words and Word Families

Teaching Children with Down Syndrome to Read a Clock

Facebook for Parents of Children with Down Syndrome

Counting 10-20 | Teen Numbers for Kids with Down Syndrome

Down Syndrome Incidence - Number of Kids Born with Ds Each Year

Do Special Educators Alienate Parents? IEP Tricks

What is Down Syndrome Like for Kids

Teaching Money Skills

Sight Words for Children with Down Syndrome

Recycling Resources and Games for Homeschooling

Discrimination Against Children with Disabilities

Dealing with Prejudice and Discrimination

Zingo Makes Learning to Read Easier

Games to Learn Money Skills for Kids

Children with Down Syndrome Can Learn to Ride a Bike!

Down Syndrome in Pregnancy | One Mother's Story

How Parenting a Child with Down Syndrome has Changed Me

How Do You Get Down Syndome?

Reading A-Z.com and IXL.com for Homeschooling Parents

Jack and the Beanstalk Activities

Recycling Worksheets for Homeschoolers

Learning the Letter M - A Day in the Life of a Homeschooling Mom

Down Syndrome Quotes

Oral Spelling and CVC Words

Talking Calculators Assist People with Down Syndrome

Assistive Technology for Our Kids

Inclusion for Kids with Down syndrome

Blake's Reading Progress

Christmas 2010

Should Down Syndrome be Cured

Adrian's 9th Birthday

My Little Recycle Helper

Discipline when Parenting a Child with Down Syndrome

Disillusioned - New Standards in AAI and Down Syndrome

IEP Checklist Application for iPhone

Number Recognition

Dr. Seuss

Atlantoaxial Instability in Down syndrome

6/11/10 Homeschool Log

6/10/10 Homeschool Log

PECS for Kids with Down Syndrome

Homeschooling Children with Down Syndrome: Teaching Reading

Handwriting without Tears to Teach Handwriting to Children with Down Syndrome

Getting Started Homeschooling

Games to Help Children with Down Syndrome Learn About Money

Bingo for Number Recognition

Dot to Dot, Number Recognition Basketball and Hop Scotch: Math Skills for Kids with Down Syndrome

Matching a Number Symbol with A Counted Group of Items: Math Lesson for Children with Down Syndrome

Potty Training

Organization and Checklists for Medical Care and Development

Grieving after the birth of an infant with down syndrome

Inclusion for Children with Down Syndrome in the Mainstream Classroom

Inclusion for Children with Down Syndrome in the Mainstream Classroom

Septal Heart Defects in Infants with Down Syndrome

What is a Septal Heart Defect?

Read more at Suite101: Septal Heart Defects in Infants with Down Syndrome

Blake's Story - The finally Chapter - Part 6

Blake's Story - Part 5

Blake's Story - Part 4

Blake's Story - Part 3

Homeschooling a Child with Down Syndrome

Home Schooling this Summer

Great Wolf Lodge

Is it Asthma? Blake's Story - Part 2