Sam does not easily dress himself without a lot of redirection and some assistance. Last week, when I walked into his room, he had already put his swimsuit on the right way and was putting on his shirt so I grabbed my phone cause I have never known him to get his clothes on by himself. Granted, he was highly motivated to find his swim shorts and shirt because he was going to the pool. You will see in the video that he notices his shirt is on backwards, which is amazing that he cares so he takes it off and then is frustrated that he can’t turn it inside out to put it back on. He says “where is the crab!!” I am surprised he didn’t call for me to help him, but he just decided to give up. He picks up the lotion which is when I had to stop recording or it would be everywhere!!! I was so proud of him to getting dressed on his own and since it was the first time for him, I had to record it. Hopefully it is the start of him dressing himself more without my assistance. When I was turning off my phone you will hear him say that he needed to go potty, which is another skill his has mastered that I AM SO THANKFUL for!!!
I luckily became aware of optimal parent-child interactions for promoting and encouraging language and communication skills early in Sam’s life. Really smart researchers specializing in language development of toddlers and infants studying Fragile X have written papers and led successful research studies about how to best maximize the strengths of kids with learning disabilities associated with Fragile X Syndrome. Len Abbeduto and his team are just some of the researchers leading the way. They have taught me a lot!
It is also up to the parent to NEVER underestimate what your child can do, especially when the odds are stacked against you. One of the most unfortunate outcomes for kids who have FX is the inability to communicate easily and freely. It is the root of their frustrations since they can’t easily tell the world around them how they feel and what they want. Even though I know this and have been taught the right skills to use with Sam, I still don’t capitalize on every opportunity. VERY frustrating!!! I found this video on my phone from March 2013 (Sam just turned 4), and I cringe when I see the missed opportunities to inject words and phrases into the “conversation.” I video him a lot, especially when it is his first experience with something, like in this video. This video reminds me that I have not broken my BAD habit of asking Sam questions when I talk to him. This article speaks to the “question” mistake I often make and ideas about what to say instead. It was a MUCH needed reminder for me and all his teachers and therapists who work with him regarding questions.
In this video, I took Sam to a drive-through car wash for the first time and you can see from his expressions that he is excited and scared at times. Below, I comment on why I said what I said to him and what I should have done to capitalize on this language opportunity even more. Sam takes showers and plays with shaving cream at home so I reference these two things during the video to connect to something he loves/knows.
1) I say short sentences about what Sam sees and wait for him to communicate with me whether it is nonverbal or verbal. I intentionally pause so he can say something/do something that I can react to, and I try to use an animated and excited tone when I talk with him.
2) When Sam communicates nonverbally, I interpret his message into words, by saying what I think he is thinking. We should say something from our child’s point of view - like your child would if he /she could. For example, Sam hand flaps when he is excited. That is a perfect opportunity for me to say, “Sam is excited," "Sam is happy," or "Sam likes car washes." I didn’t do this in this video:(
3) I also try and expand Sam’s verbal communication acts by adding a word or two to what he says. Offering language models that are slightly ahead of your child’s current ability is ideal. I do that a few times correctly in the video.
4) I ask Sam “where did the water go” even though I know he doesn’t know the answer to that question. Bad habit of mine. I should have said “the water splashes the car” and just described what the water did to the car. I usually try to ask questions I know Sam knows the answer to. This helpful article tells you the right way to ask the questions Sam knows. I share this article twice in this post cause it is so darn important!
Again, NEVER underestimate what your child can do. Sam amazes me every day. If there is one thing I learned quickly about this Fragile X World, I am ALWAYS learning!!!! You may have other suggestions so please share your ideas about maximizing language. I have other techniques I know and use but didn’t reference them today. I will share the extensive tips in a later post since I have only touched on a few.
Sam was not super excited about Halloween this year, but I wanted him to experience this American tradition because the more exposure he gets to different experiences, the better he is the next time around. Last year, when Sam was 3, we took Sam trick-or-treating, and he seemed okay with this new experience. We started a Halloween tradition last year going over to Sam’s younger cousin Cole’s house to trick-or-treat in his neighborhood so we did that again this year. He is not into dressing up so without that interest, it makes it harder to get him excited. Not to mention, walking up to an unknown house with unknown people isn’t the top of anyone’s list who suffers from signifiant anxiety. Finally, you think candy would be enough to hook any child but Sam isn’t a huge fan of candy right now. After visiting 4 houses, Sam said let’s go home, and we were fine with that. Cole was ready for more and kept asking Sam to go to one more house but that wasn’t enough to keep Sam out longer. Overall, Sam did really good walking up to houses with Cole leading the way. He didn’t get upset when people were trying to talk with him ,and he followed direction really well navigating the streets and walkways. He also kept his hat on for most of the time, which was big for him cause he doesn’t like hats. Happy Fall Y’all!
Sam attended his first college football game in October and did great considering he was sitting in a stadium with 80,000 screaming fans. So proud of him and hope the next time we attend a game, it will be an even better experience for him.