Down Syndrome and ADHD: Our Diagnosis Story

If you would have told me 4 years ago that I would be medicating my child to treat ADHD I would have scoffed and presented you with a bottle of fish oil. Just one of many alternative treatments for attention deficit disorders. I have the Down syndrome to thank for keeping me humble and teaching me that I don't know as much as I'd like to think I do.

I'm sure other parents of children with Down syndrome wonder if their child's attention span is typical of a child with developmental delays or has it gone into the realm of ADD/ADHD. I'm not a medical expert, but I can tell you how we made that determination.

In September (Goldie was 3 1/2) I noticed that I was redirecting her towards acceptable activities every couple of minutes. In addition to the redirection and positive reinforcement, we also started explaining consequences and using time-outs. Goldie responded very well, but it illuminated the fact that the problem was not behavioral. Even when I was sitting on the floor playing with her, she wasn't able to stick with an activity for more than 2 minutes.

My next thought was that the problem was developmental. Was I expecting too much from her? Were her developmental delays responsible for her lack of focus? I did what all mothers do and began comparing her to my other children at that age. My oldest could sit and listen to me read all day at the age of two. Daughter number two couldn't sit through anything longer than a board book until she was 5 and would not watch t.v. until she was 4. Yet, she could still stay on task longer than Goldie. Which brings us to Hank. At 15 months he will sit and play with a toy for 3-10 minutes.

During this time I happened to be talking with a friend who has a daughter with DS that is a year older than Goldie. We both agreed that our children needed help choosing an activity, but in Goldie's case it would only keep her occupied for 2 minutes. Times like these are when I wish I was active in a real life DS support group so that I could have more exposure to other children.

For as long as I can remember, I kept telling myself, that when Goldie's vision and fine motor skills improved she would be able to sit and play. Her vision improved tremendously and she is able to do many things, but her ability to focus on an activity never improved. As she grows we see her making progress in so many areas. Attention has just not been one of them.

After implementing a list of alternative remedies as long as my arm and finding no relief I placed calls to Goldie's pediatrician, the Psychology department and the Down Syndrome Center at Pittsburgh Children's Hospital. The DS center was very helpful. One of the first things they asked was for Goldie's evaluation scores from her IEP. I know most of us don't like these evaluations, but I was glad to see that the scores were useful to ME for once. In most areas Goldie had a 25% or less delay. Except in Attention and Memory where she had a 50% delay.

The final step was having her therapists complete evaluation forms for the Down Syndrome Center. I recieved my own parent survey to fill out. The results? In her doctor's words "She is off the charts for ADHD. I am surprised she is as well behaved as she is. I expected her to be all over the place." (Thanks go to the iPad for keeping Goldie seated. She must have gone through 10 different apps in just as many minutes.) He pointed to the chart and showed me the range in which children with DS normally fall and the range in which Goldie was. We discussed treatment options and possible interactions between Goldie's supplements and medications. Later, I received a large packet in the mail on Down syndrome and ADHD.  What I've read so far has been both disturbing and helpful.

I'm sure your wondering how the things are going with the medication. While I worry tremendously about the long term consequences and side effects, right now things are much better. Goldie has not had any negative side effects from the medication and I feel like it has bought us some time to continue exploring other treatments.
 

If you are looking for more information here is a link to get you started.
http://www.riverbendds.org/index.htm Click on Medical Series, then ADHD.

Free Kindergarten ABA Apps for Autism Awareness Month

Kindergarten.com is offering all of their ABA apps free for the month of April in honor of Autism Awareness Month. I was actually going to purchase some this week after hearing about them over at Unringing the Bell. Really, I bought an iTunes card at the grocery store this weekend so I could get my fuel discount. Glad I didn't have time to use it!

FYI: The ones listed under the heading Flashcards were always free and the rest of them were 99 cents.

I would recommend the receptive language ones and I downloaded the Action Flashcards for Goldie because verbs are something she has been working on in speech.

March 21st is World Down Syndrome Day

Just a reminder that Monday, March 21st is World Down Syndrome Day. March 21st was also my due date when I was pregnant with Goldie. I guess she didn't want to be defined by her diagnosis since she chose to make her entrance ten days sooner!

Here is a link to the events going on in the United States on 3/21.

http://www.worlddownsyndromeday.org/usa.htm

Down Syndrome Deals!

Woodbine House 25% OFF

MARCH 21 only!! Woodbine House is offering an online sale of 25% off 40 products on Down syndrome and related issues in honor of World Down Syndrome Day. The sale lasts just for one day -- March 21, 2011, so be sure to order online on Monday at www.woodbinehouse.com


Talk Tools 40% OFF  DVD Sale

TalkTools is offering 40% off of their self-study dvds. I've also heard that if you call these dvds are available to parents for 50% off. Wish I had known that! If you are looking at the Down Syndrome Population dvd, mine is for sale. I have the CEU paperwork to go with it, as Goldie's therapists didn't need it. Just leave a comment or send me an email.


Down Syndrome: What You CAN Do
by Kim & Qadoshyah Fish

If you don't already have this awesome book now is the time to get it with free shipping until 3/21. Go here and use code GROUND305. I won a copy back in December and have referred to it numerous times since then. It is all the research I've been finding here and there, plus some a whole lot more, put together in one easy to use book. Just today I was ready the articles on Neurodevelopmental Therapy. This book is so positive and comprehensive; I wish it had been available when Goldie was born.

Goldie Knows the Alphabet

One thing I've learned is that Goldie is not a performer. She does not like to be tested on what she knows. A couple nights ago, Goldie got out her alphabet letters, so I grabbed the camcorder on the off chance that she would show off for me. I got lucky! Her are a couple videos of her identifying the letters of the alphabet. Part 2 includes some lowercase letters. You'll notice that instead of naming a couple of the vowels she tells me what sound they make.

Warning: the lighting is poor, her pajamas mismatched and the slip cover for our couch was in the laundry, but this is real life with 4 kids!

Happy Birthday! Goldie is 4

Goldie had a birthday last week! If you ask how old she is she will proudly hold up four fingers and say "four". After some practice she is even able to get her little thumb against the palm of her hand instead of behind her fingers. I never thought I would enjoy life's little details so much!

My favorite moment from her birthday this year: Goldie had done something she's not allowed, I don't remember what, and I was explaining why when out of nowhere she says, "Birthday. Four." and rooooolls her eyes. Like "Hello Mom, it's my birthday, I can't be in trouble. I get a free pass today!" Of course I cracked up after that, probably reinforcing whatever behavior I was trying to correct.

The last year has brought some big accomplishments! I'll list a few that I can think of off the top of my head.
- looking out for her brother (she was yelling "hurt" at him tonight as the went after an electric cord!)
- learning all the letters of the alphabet, upper and lowercase!
- asking and answering questions
- dressing herself
- beginning to sight read
- she can identify 9 different shapes and 10 colors
- growing tall enough to sit on the swing without help
- potty training, it has been over a month since we quit the pull-up habit!
- blowing bubbles
- turning door knobs

Wow! Just looking at this list has me excited for what the next year may bring!

Down Syndrome, ADHD and Sensory Processing Disorder

For over a month now I've had a half finished blog post titled "Down syndrome and ADHD" waiting for me to find the time to complete. Goldie was diagnosed with ADHD last month. I pursued the diagnosis for her so she would have access to treatments that I can't provide on my own.

Until recently, Goldie didn't have a consistent OT. I've inquired to her current and old OT about trying Therapeutic Listening or a weighted vest to help with her lack of focus and attention. I was beginning to think they were blowing me off, but I politely persisted.

Goldie's OT provided me with a sensory inventory to complete. I knew she would have differences in a couple areas, but the inventory revealed her sensory needs are much greater than we had realized. Her OT and Speech Therapist admitted that they had never observed behaviors that would indicate Goldie has a sensory processing disorder. We had a long and productive conversation where I was able to give the Occupational Therapist insight into her behaviors at home. Together we came up with some ideas to help Goldie.

Initially, it will mean more work on my part. My thoughts are that it can't be worse than redirecting her every two minutes! We already do a lot of sensory activities with Goldie like swinging and sensory tubs (probably why her behaviors weren't more obvious). Overall, I am relieved to know that this isn't just a "DS thing" and there is more that we can do for her. So when I'm not brushing, compressing joints and trying to keep the headphones on, I'll be working on some posts about these new diagnosis. If any of these are things you are already dealing with, I would love to know your favorite resources, books, etc...