National Down Symdrome Awareness Month

October is National Down Syndrome Awareness Month. Of course, for those of us who live with DS, every month, even every day, is filled with awareness.

I'd love to see a world where my son isn't judged on his chromosome count. Where he isn't judged on what he cannot do. Where he isn't placed in a "box."

It's amazing to me how much misinformation is still out there when it comes to DS.

Ignorance breeds fear which breeds prejudice. We fear what we do not know. In far too many instances, rather than educating ourselves and learning the truth about what we do not know, we resort to fear and prejudice. We make assumptions and paint people with a broad brush of ignorance. We hang onto stereotypes. We'd rather stay safely ensconced in our cocoon of ignorance than reach out and become educated.

Education can dispel the fear. Dispel the prejudice. Change lives. Education is the answer.

Happy October. And Happy Down Syndrome Awareness Month.

Bribery?

Yes, I am guilty of bribery, but I like to think of it as intelligent motivation on my part.

Each weekday I work with my son on his speech. Our therapist is wonderful and every time we go for a session she gives me tools to work with him at home. I also homeschool him through an online school in Colorado. His teacher there is fantastic and it so willing to work with me.

We spend hours each day going through mouth exercises, making sounds, doing flashcards, working on the computer, learning to read, and reading books. Some times, okay a lot of times, he'd rather play than work (what kid wouldn't?). So I've had to find a way to motivate him to keep working.


I've learned that if I use food to bribe him it works well. Amazing how fast he works through a lesson on the computer, correctly, when he has motivation. I've also found that letting him do activities he likes in between the things he needs to do works well. Doing a puzzle, playing an educational game on the iPad, or jumping on the trampoline all work for him. The key is finding what works each day.

Yesterday, after he completed an activity, the therapist set a timer and let him play with toys until the timer went off. Then it was back to work. She also uses mini M&Ms as motivation.

He's willing to work harder and longer when there's something he wants in the mix. And he's learning delayed gratification. So while it may sound like bribery, if it works to help him learn to speak and to do his schoolwork, then it can't be as bad as it sounds, right?

Gap Between Sounds and Words

Before I had my son with DS, I never thought much about speech. My kids started talking and that was it. They didn't struggle with speech at all. I never realized all the steps that have to fall into place for a child to speak--steps that just came naturally with my other nine kids. My son knows the names of the alphabet. He will see a word and spontaneously start saying the names of the letters that spell it. We've been trying to make the shift from naming the letters to saying their sounds. He can say the sounds for 70% of the letters. "K" and "F" sounds are hard for him. His therpist has found a program (Kaufman) that helps kids bridge the gap between saying the sounds and combining them into words. Our goal is to teach my son how to take the sounds and make them into words. He's starting to do that with "moo" and a few other words. What's interesting is that he says some words naturally that he learned on his own. I'm not sure why he's learned some words like, "mom," without any intervention but needs help with other words. His therpist thinks he has apraxia, which means his brain sends the word to his mouth, but his lips and muscles don't move correctly to form the word and it comes out garbled. Fortunately, therapy helps kids overcome apraxia. We practice saying the same sound combinations over and over again to train his mouth muscles. If I'd known I'd have a son that needed speech therapy, I would've studied it in college so I could be more helpful to him. At times, I feel like a failure because I'm his mom and I should know how to teach him to speak. Thankfully, we've found this amazing therapist (who in yesterday's session demonstrated she has the patience of Job) that can help us.

Great Online Reading Program

I found a really good online reading program. While reading the info about it, I found a section that said it has helped kids with special needs learn to read. Typical kids need to be exposed to words a few hundred times before they master that word. Kids with DS need to be exposed a thousand times (or something like that). I figured that if I can expose my son to reading in as many different ways as possible it will set him up for his best shot at success. The program is ClickNRead. I bought the version with Looney Tunes because my son gets bored so easily. The regular version is $19.99 for a year. Looney Tunes is $29.99 for a year. I also added the spelling program, but my son isn't ready for that one. He loves this program. He can find it himself and he does. He'll sit through the lesson and participate all on his own. Right now in speech therapy we are working on sounds and this reading program focuses on the sounds of each letter. Perfect timing. I'm really excited about it and hope it will help him learn to read. And maybe even talk.

Speech Therapy: Awesome

We had our first speech therapy session on Monday. It was a-ma-zing. I'm thrilled. The therapist had emailed me a report from her evaluation a few weeks ago. I wasn't surprised by her findings, but I was shocked to see a set of goals to be met in 3 months, 6 months, and 9 months. Realistic goals and a plan to meet those goals. Wow! I've never had a therapist do this. We have goals and ways to meet them. I feel so invigorated. Like my son will actually talk at some point. I am a total list person. So a list of goals is perfect for me. Concrete plans. I love it! I am so energized and excited to see what happens. We have been working on tongue/mouth movements as well as sound cues. I give my son a visible cue and then he repeats the sound associated with that cue. He's been doing great and is even making some of the sounds without the cues. We're already making progress. Wish I'd found this therapist years ago!

Getting Our Groove Back

We really enjoyed summer break. My son played with his siblings, spent a lot of time jumping on the trampoline, played with toys, went swimming, and used his educational computer games. I try very hard each summer to have a schedule, but it's a much different schedule than the school year. I like to let my kids have plenty of time to play, make crafts, read, practice the piano, and relax after a school year filled with so many demands. We also do chores, weed the garden, and work on bigger projects like deep cleaning bedrooms (not my kids' favorite). I started my son in his online school last week and we are still struggling to find that groove. He'd rather play than do school. Well, of course he would. Who wouldn't? I'm hoping this week will allow us to get back into a schedule so we can get more school work done. I'm looking forward to this school year and the possibilities ahead. I'm excited for him to learn and grow this year. We just need to get our groove back :).

Reading and Down Syndrome

Last night I went to the open house for our middle school so I could meet my kids' teachers. One of the classes offered is called Kids-to-Kids. It's a special education, center-based class for kids who have special needs. Kids without special needs can sign up for the class to serve as helpers, mentors, and friends of those with special needs.

Seven of my kids have worked in this class and they have all loved it. I think it's an excellent way for typical kids to meet and mingle with those with special needs. It helps typical kids see beyond themselves and serve others.

I met a young man last night who has Down syndrome. His mom taught him to read and she said he loves to read. Another young man in the class, also with DS, reads. I was so happy to hear about it because I really want my son to read. Reading is such a wonderful thing and I hope he'll be able to enjoy it.

He already recognizes many sight words and I am doing a specific reading program with him that's designed for kids with DS. I spoke to his teacher for his online schooling program and she's enrolling him in an individualized reading program that will not only track his skills, but give him work relevant to his skills. We'll know exactly where his strengths and weaknesses are. I'm very excited. I intend to do all in my power to get him reading so he can enjoy all the stories out there.

Starting School

I've enrolled my son in an online school this year. It's the same program he did last year. He seemed to do well and he really enjoyed the technology part of it.

I plan to supplement it with my own reading program designed for children with Down syndrome. I will also supplement his school learning with sound cards to help him with his verbal skills.

Our plan is to enroll him in the local public school next year but we want him to be able to verbally communicate much better so that's what I'll work on with him throughout this year.

I was surprised last year by all that he learned through this online program. Yesterday and today we've been doing some review and he's retained quite a bit. One of the fallacies I've heard about kids with DS is that they can't really learn. So not true. My son has learned, and knows, his letters, numbers, many sight words, concepts such as in and out and up and down. He is now spelling his name orally. He can definitely learn and anyone who thinks differently is just wrong.

I'm looking forward to this school year to see what he'll learn and how he'll grow. Mostly, I'm hoping he'll be more verbal by the end of the year so that he can go to public school and be able to communicate with his peers and teachers.

New Speech Therapist Impressions

We met with a new speech therapist yesterday and I must say I was very impressed. She was very attentive to my son. She was patient and gave him such positive reinforcement.

She tested him on sounds and his ability to join more than one sound. He did pretty well. He actually made sounds I hadn't heard him make before. Each time he made the right sound, or even attempted the sound, she gave him a sticker. He started to get a little silly by putting his feet up on the table, but she was very kind and patient with him.

She seemed to be impressed that he kept eye contact with her and focused on the activity she was doing (except when he put his feet on the table). He has a long attention span if it's something that interests him--just like the rest of us. I know that my attention span is that of a three-year-old unless I'm interested. She did a good job of keeping him interested by moving to the floor, giving him train tracks to build for a train, and having him give her high fives.

She showed us some of her materials, including a CD with songs that encourage making sounds, and I am so, so excited for the possibilities. I felt like she was very tuned in to my son and very knowledgeable about what we can do to help him use more verbal skills. She's so enthusiastic and I am grateful we found her.

New Speech Therapist

Today we are meeting with a new speech therapist for an evaluation. I've been in email contact with her and am excited to meet her. She asked for a video recording of my son in his own environment so she could see how he communicates. She also asked me to provide her with a list of words he says and words he signs. So far, she's asked for more information on him than his previous therapists.

Of course, my son is such a performer that as soon as he saw the camera recording him he started acting silly for it. I did finally get him spelling his name, singing the ABCs, reading a book with sign language, playing with toys that were talking to each other, and doing his favorite thing: playing with his fingers. He likes to use his fingers as people and make them talk to each other and chase each other.

It's hard sometimes not to get frustrated that my son isn't speaking more, but when I look back over the last year or so, I can see a dramatic improvement. He isn't carrying on verbal conversations but he's using more words and trying many more sounds. He's also using more signs. He's definitely progressed in his communication skills and in his verbal skills. I just get impatient at times and wish he'd start talking and tell me what's on his mind.

I'm looking forward to working with a new therapist and hope she'll provide me with definitive things to work on at home with him.

Update and Apps

I stopped writing on this blog because it seemed like there wasn't much interest and moved posts about Down syndrome to my personal blog www.rebeccatalleywrites.blogspot.com. However, I've noticed that there are still page views so I assume there are people out there trying to get more information about Down syndrome.

It's been almost a year since I last posted here. During this last year, I enrolled my son in a virtual kindergarten program. He did very well. Much of the program was online and he's a whiz on the computer (much to my chagrin most of the time). He struggled with writing letters and some of the offline work so we focused on the online part of the program.

I also spent time each day with him on the iPad with apps. There are so many free apps out there it was hard to sort through them. While he enjoys a lot of apps, his favorite, hands down is the Elmo's ABCs app. He can spend hours on that app and, as a result, has learned his ABCs. He sings the ABC song at least a billion times a day. He knows the names of all of the letters. I think this app is $5.99.

He also likes PocketPhonics. I like that one as well because it teaches him the sounds of the letters and then has him spell out words by sounding them out which is what we're working on now. I think it was $2.99.

In addition to these, I've also gone over sight word flashcards with him and he can sight read at least 100 words, probably more.

He continues to be healthy and very happy. He can also spell his name now.

For anyone who has a child with DS or has recently had a baby with DS, I want you to know your child has a very bright future. Don't let anyone convince you that your child cannot learn or enjoy life as much as any other child. It may be different and you may have to make adjustments, but it's so worth it.