I like to write about D and educate people on his issues/needs. You never know who might see it and glean a bit of information for someone they know who has the same.
Bear with me as this may get long.
I adopted D when he was 2 from foster care. Without going into too much detail about his birth circumstances, he does have some brain abnormalities that stem from when he was in the womb.
First in line, is a condition called Agenesis of the Corpus Callosum, which basically means that the middle part of his brain, which connects the two sides, never grew. Amazingly, his brain has made a way where there is no way. They didn't think he'd ever walk or talk, and now he runs and yells. So he's doing pretty darn good! It does mean that processing things is slow, but that's ok. He CAN learn, it just takes a ton of repetition for it to finally click.
He also has what is called Colpocephaly. This means that, out of the 4 ventricles in his brain, two of them are huge and filled with fluid. One is about 10 times the size it should be, and the other is about half of that. They are considered "stable" though, so draining the fluid apparently would do no good. The ventricles aren't being pushed larger due to the fluid. As I understand it. It does cause D to have headaches at the back of his head quite often lately, and esp when he's having seizures.
And third, he has Gray Matter Heterotopia. This is where some of his gray matter in his brain did not grow in the right spot, so it's just kind of hanging out there, causing problems. The majority of it is in his frontal lobe, unfortunately, which affects his short term memory, his impulse control, critical thinking, etc. It also is what is likely causing his seizures.
He has two kinds of seizures so far. Absence seizures which are basically staring spells, where he'll just be frozen for 15-30 seconds, even up to a minute. And he has drop seizures, where he'll just hit the floor unconscious for up to a minute. Thank goodness he's usually either already ON the floor playing or sitting at a desk when these have happened, to avoid a head injury! For the most part, they are under control with lots of medication. However, every time he has a growth spurt, they start back up again, and we have to adjust that.
Overall, D is a wonderful little man. He's so sweet and caring, loves to be social. He does have some developmental delays, esp with cognitive, he's behind there, and is about at the level of a 4 year old. But despite these challenges, I wouldn't change him for the world. Lil homeboy has lit up my life and taught me so much about how to get through life. Wherever he is, there he is...is what I like to say about him. That doesn't mean he doesn't struggle with getting overwhelmed at times, or get mentally exhausted from dealing with it, but he handles it.
He goes to an awesome public school, that provides him with aides through the day, plus special ed pull out. His special ed teacher, he has had her for the past two years, and he ADORES her. I love that everyone there really has tried to figure him out and understand him. They don't just discipline him for things he can't control.
I hope this helps people understand a bit more why he might freak out at times, or alternatively why he's super quiet at times. Some of that is when the meds kick in, they make him a bit zombie-ish. Other times, he's just done.
This is classic D-man (and also the pic from his first day of First Grade this year).
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