The hardest thing about turning 40 last week was knowing that if I die in my 80s, I only have 40 more years with my son. Doesn’t seem like a long time since time is flashing right before my eyes. I often say “where did the year go?” It is equally as hard to think that if I live until 80, Sam will be my age when he looses me. It makes me sad to know that he will live in a world that might not understand or accept him, and he won’t have the love of his mother to protect and guide him. As my husband and I prepare to meet with an attorney this week to create a special needs trust, my anxiety level is sky high as we will be asked to prepare for worse case scenarios in this meetings. Despite this rather depressing snapshot, I have so much to be thankful for….and this video is one of them. This was the first year that Sam really understands what celebrating a birthday was really about. He has come such a long way since starting early intervention and OT, PT and Speech that I feel like the luckiest mom in the world. So on this Mother’s Day, I am especially grateful for the little things in life as I watch my son reach milestones and overcome anxiety to embrace life and create new, fun memories that will last a lifetime.
The University of South Carolina is home to more than 200 years of history and tradition, rising from a single building in 1805 on what would become the heart of the campus, the Horseshoe.
Early intervention is important for children with autism, a developmental disorder that inhibits socialization. So be on the lookout for warning signs.
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.