I recently posted this video below to my Facebook page because it made such an impact on me.
I can relate so much to this family and their story. I know what the dad in this piece feels and have heard some of the very words used by his daughter by my own, or at least their meaning.
Please pause and watch this phenominal story!
I don’t have autistic children, though we have tested for similarities that affect autistic children in my daughter and possible similar causes for her condition. Fortunately, my daughter is able to communicate with us. And she’s getting to that age when she’s noticing how different she is from all the other kids around her.
Since she has walking issues, her “differences” are more apparent. We’ve even had younger kids randomly in the hall at school suck in air and say “what’s wrong with her LEGS???” Of course, since we still don’t have a diagnosis, there’s not much we can say. And the things we DO know, it’s hard to share with a kindergartener in the school hall before class begins, and even expect them to understand a word of it.
Our usual response is, “we don’t know. She walks differently, but she’s still a fun, nice kid to hang out with.”
Unfortunately, sometimes that’s the only thing we can say to her, too. I don’t know why her Neurologist, Physiatrist, Gastroenterologist, etc., don’t have the answers, say she’s rare, and throw their hands up, signaling they have no more ideas of what to test for or what to do next.
We also have twin boys that are going through therapy at the moment. With them, I can relate when the dad in the video above talks about not being able to understand her or what was going on in her head. Sometimes I feel like that with my boys when they react SO strongly to things but not knowing why or what the purpose is behind that reaction.
For instance, one of my boys, during the middle of meals, will scream, push the spoon away (or bowl), but act like he’s reaching for my hand. When I try to give him the spoon, the reaction gets bigger and louder. (ok… obviously that’s NOT what he’s wanting) Then he will reach for one of my fingers, but it has to be the *right* finger. Not just any finger will do! And I have learned I can’t offer him a finger. For, in his mind, it has to be the *right* finger, but when he starts this process, it’s aparent he doesn’t know what the *right* finger is. He’ll grab my thumb and immediately let go. Then, he’ll start to go for another finger, then pull back again. Finally, he’ll settle on one, grasp it, and hang on. But if, at any time, I offer the spoon (with food on it) to him, it escalates him.
Finally, after all of that, he will only hold onto whichever finger he’s chosen for just about a minute, let go, and is fine. Literally, FINE! I can then offer him a spoonful, he eats it, and we all go about our day.
He’s done this exact thing twice now in the span of 2 days. I just is baffling to try to figure out what’s going on in their heads sometimes and why they are having this reaction.
We have noticed a lot of interesting things through our therapy sessions and beyond. I will share more of those fun adventures soon.
If you are a parent of one of these wonderfully interesting, curious, and loveable little bundles, know you are not alone. You are not the only one who wonders, waits for answers, and yearns to see them fulfill all their potential. You are thought of DAILY. I think about all the other parents, in my loneliness, going through the same thing… hoping they don’t feel as lonely and helpless as me.
BUT… I have resolved that I’m NOT helpless, nor is this hopeless. I can do those things which I know to do and those that I have control over. I pray for my family and their healing and recovery. And I feed them the foods that their bodies LIKE and are beneficial for healing. I pray for wisdom and understanding. And I’m doing the same for you…
You may not be the parent of a special needs child. But if you know someone who is, please share this with them. It’s nice for us to know we are not alone!