Sean is autistic. He is high functioning, but I’m beginning to wonder what that really means. He can communicate and has always had language. He’s receptive language used to be way behind. When he was diagnosed, shortly before his 5th birthday, you could ask him a question and he would answer.
But he wasn’t really answering the question you asked. He had just memorized appropriate responses and would answer with one of them, giving the impression that he was having a give and take conversation. It took 8 weeks of testing for them to figure this out. He’s a clever one and quite personable. He is Mr. Charm and the testers would just fall in love with him. It was hard to get him the autistic diagnosis. At one point they actually asked me if I wanted him to be autistic. My answer was “I want him to get the help he needs. If that means he’s autistic, then so be it. I just want what’s best for him. I’m not afraid of the autistic label.” Then when they got to the deepest layers of the testing, they were shocked at what they found. His real communication skills were actually very low. He’s just so smart that he learned how to fake it and adapt at an exceptionally early age. He would have fallen through the cracks if I hadn’t fought so hard.
As he’s went though Kindergarten, first and second grade, I began to worry again. He was NOT learning to read and write. He randomly wrote letters, numbers, even his name backwards and out of order. He could recite the alphabet, count to 100, and spell his name verbally. But if he had to write it down, forget it. Something would be wrong. For three years they worked with him on just the basics. And by the beginning of fourth grade, he was still randomly writing letters and numbers backwards. And occasionally he would write his entire name backwards.
They finally tested him for dyslexia. The results totally surprised me: 100% negative. He absolutely did no have dyslexia. I probably should have been relieved, but in fact I felt quite the opposite. If he wasn’t dyslexic, then why was he still having so many problems with writing. And reading. He also couldn’t remember the sounds letters made when sounding out words. He could make the sounds individually. But putting them in a word configuration, forget it. Reading was not happening.
The school psychologist said that he has a memory problem. An unnamed learning disability. Awesome. Now what do we do. At least dyslexia has a methodology in learning how to cope. This LD that Sean has is more individualized. There’s no known program for dealing with this. How do we teach Sean to read and write?!
The answer is simple and yet probably the most difficult. Tons of repetition. A thousand times more than the average child needs to learn and remember something. I have been terrible at following through with this. Especially since I don’t fully understand it.
My plan is to meet with Sean’s teachers at the beginning of the upcoming school year. Not just for Sean, but for me. To learn how I can help him. Between the autism and the LD, he’s got two strikes against him. School is going to be a struggle, for both of us. But I expect that we’ll both also grow from the experience. This could very well turn out to be more of a blessing than a curse. It just takes the right attitude… on both our parts.
My eldest grandson is very similar. Despite the normal ‘flush of antibiotics’ during childbirth, he developed Strep A at birth, which is normally fatal. ONLY because he was kept in the hospital for his jaundice, and they decided to treat his mild fever that they thought was just from the heat of the bilirubin lamps they use to treat jaundice, before the lab work came back, did they realize the severity of his disease. He stopped breathing many times during that first week or two, and went home with a heart monitor on him so we could shock him when he stopped breathing. Rough go. He tested for disabilities; he has a unique learning disability too. In a nutshell, his wires are crossed in his brain. He is a whiz at math and hockey facts and memorization. he sucks at reading. It helps that my daughter, his mom, is a teacher, so she’s able to help more and champion his cause more from the inside, but it’s still a struggle, particularly now that he’s in middle school. He was kept back in 4th grade to help him catch up, but entering 8th grade now, he reads at a 3rd grade level. Still, that’s an accomplishment, and the Reader’s Digest is geared to a 4th grade leve; the school of thought is that if one can read at a 4th grade level, one is ok/can function throughout life. So he’s close. Still, it’s tough. Middle school/early adolescence is hard enough without this burden to bear.
I worry about his future. How far can he go, how will the frustrations affect him, you know? All we can (continue) to do his champion his cause….yet hold him as responsible as is appropriate for his truly special needs.
Hang in there mom; he’s blessed to have you. :: hugs ::
Sunny,
That’s so heartbreaking about your grandson. I think even harder because it’s something that was supposedly preventable. Since Sean was born this way, it was a little easier to accept. I think I would hold a lot of anger otherwise.
Middle school terrifies me. Sean is sweet but has odd behaviors. It’s going to make him a potential target for bullies. He’s in a protective environment right now. I don’t know if that will change when he enters 6th grade. I have two years til then, but I’m already stressing about it. Too bad I’m not one of those people who lose weight when they’re under stress. I’d be at goal weight in no time!
((HUGS)) You’re a fantastic grandma!
Thanks sweetie. :: hugs right back atcha, good mommster! ::