MirageThank you so very much for sharing this.Wed Apr 4, 2012 10:17126.96.36.199I have never been diagnosed as autistic but some people have suggested that I may have Asperger's. That is not why I am thanking you. I am thanking you because before I turned 2 I was diagnosed with type 1 diabetes, and that, too, is incurable. My parents were unprepared. It had taken my mother years of fertility treatments and when she finally had me, everything suddenly went wrong around the time my sister was born. Nobody really knew how to care for a diabetic that young. All they knew was, they don't survive very long that young. At UCLA a doctor there, without asking my parents, intentionally allowed an intern to give me too much insulin, putting me into insulin shock, in order to teach him not to treat the ketones instead of the glucose levels. Later specialists told my mother that incident may have caused me some brain damage which led to...various problems later on. I don't think in fairness that the doctor realized at the time how damaging insulin shock can be to a toddler. In my mother's day, it was used as a cure for acne and depression. Now we do know. If he had known, he might still have thought it wouldn't matter, since everyone agreed I would not live to age 4.
One thing my parents learned was that sometimes experts don't know what they are talking about and if their gut feeling was not to trust a doctor, walk out before something bad happens, no matter how famous the doctor is. My mother pretty much took charge of my care piece by piece as time passed, and she was right about what I needed almost all of the time. I started growing again. It became rarer that I would have a hypoglycemic episode and foam at the mouth (literally). We still had to go to doctors a lot but she would sometimes say "That won't work." She later taught me to say it too. I hope you will not ever question your own judgement if something feels wrong. You as a parent of your sons *are* a world expert.
Your post is my first firsthand glimpse ever into how my parents must have felt when I was small. For obvious reasons, they never discussed their frustrations with me but even as a child I felt very guilty sometimes, because I could tell their marriage was in trouble and I was one of the reasons. I knew that my father worked longer hours than most dads. My mother would complain bitterly when he took a position that required him to be out of town 2/3 of the time for years, leaving her with two small children to take care of. Only later did I understand they needed the money to take care of me. When I made it to 4, they were told I might make it to 6 but not much past that. My father had sort of closed down emotionally. I still had a death sentence on me, and he thought he would only have to deal with that for a couple years. Then it got extended, but did not go away. I think maybe he was terrified to bond. Around the time I turned 6 my parents had the diabetic talk and the death talk with me. I don't know if you've had the autism talk with your sons. I think it helped all of us deal with it. I was still too young to really be afraid of death, so I think they picked a good time, before someone else outside the family could explain these things in a traumatic way. At some point if it hasn't happened already you might see David starting to internalize your protectiveness of Eli and he might stop being as confused and jealous and become very protective. That is what happened with my sister, and she was younger than I am. She still is protective of me. I've seen that happen in another family as well. It was great for me, but you might need to remind him to look out for himself, too.
My parents were awesome amazing parents. They did the impossible every day. I was the healthiest person in the family for awhile, even though they and the doctors were pretty much making things up as they went along. Still there were bad periods with my health, and at one point, it really looked like they were going to divorce over money stresses. I was the money sink. I knew that when I was maybe 8 or 10. When my sister needed dental surgery and braces, I knew why she couldn't have them, and I have a lot of guilt over that too, because to this day chewing is not entirely comfortable for her. She tells me not to be silly, it doesn't matter, but it does.
I cannot hug my parents anymore, but if I could hug you right now, you'd have to pry me off. Thank you for hanging in there somehow and never blaming your child. About the only thing I can say that might help is that he will eventually understand it all in his own way, and I am pretty sure he will appreciate it. Also...if you ever get so frustrated you don't know how to keep going, you are not alone. I saw my parents go through that too, and somehow they always found the strength. I don't know how, but I am so very fortunate, and so are your sons.
It will pay off. Your son will do much better and be much more confident than he would have been otherwise because of your love and your faith in him. I promise, and believe me, I know. I started out in remedial reading, doing very poorly in that, and there were no special programs for me in my grade school. There was one good teacher who believed in me, but mainly my mother refused to believe I couldn't find some way around it, and she went to immense trouble to find books that were about obscure things I was sort of obsessed with. I don't think most parents would have been able to locate at least a dozen books about Theseus that a 2nd or 3rd grader with major dyslexia could teach herself to read. I would go on these weird fads, and every time I did, she would run out and get books. It worked. I wanted to read them so much I somehow managed to do it, without any special education. You will know what's going to work. You really will, and it *will* work. My first job was as a reader for a literary agency. Never give up hope. Family is everything.
Great teachers can help you, too, and will let you know what's happening. My second grade teacher realized right away that I frequently got overwhelmed and stressed. I had started twisting my hair constantly or holding books in front of my face because of learning and social difficulties, so she made a deal with me. If I got my assignments for the week done early, I was allowed to hide under her desk during recess, as long as I took a book under there with me. I could choose any book on the shelf. Of all coincidences ;), there were these books on Greek mythology from the high school library on the shelf...
I read them!
- Having a child with autism Frashavan, Wed Apr 4 08:19We didn't know that Eli had autism when we adopted him, we knew he had a wonderful, magical smile. We knew he adored his big-brother from the moment they met. Time went on, and he didn't start to... more
- I am glad nobody cured my of my Asparger's ... Baruch, Sat Apr 7 08:47if they had, I would drive a big pickup truck, drink beer, and watch NFL ;-) Like Capt Kirk said about himself, in the movie about Spock's misguided brother, if he was healed of his pain, he wouldn't ... more
- So much to learn... clarym29, Wed Apr 4 12:24I remember watching a documentary on The Learning Channel, I think, featuring an autistic woman who is now in charge of an agricultural program at a Texas University I think. I do not remember her... more
- Indeed MN_Morgan, Wed Apr 4 10:37It sounds like they're taking good consistent structured care of him. The boy I train with after school has Autism, and it's not an easy task to keep from sabotaging work done with him. It makes me... more
- They are really good Frashavan, Wed Apr 4 18:09Eli loves school, and learning things, which helps a lot.
- Each person born, is handicapped ... Baruch, Sat Apr 7 08:49most handicaps aren't visible. Each child learns, if possible, ways of coping, by using their body and mind, in creative ways. This is like the genesis of a shaman. In their case it is mental... more
- I like that analogy clarym29, Sat Apr 7 10:09I guess that is a more creative way of saying that everybody is different.
- Creative yes, but hopefully more hopeful and insightful (nm) Baruch, Sat Apr 7 10:34
- That's something beautiful... MN_Morgan, Thu Apr 5 13:08When you see a kid get engaged into something like that. Sounds like he's gunning 110%.
- Thank you so very much for sharing this. Mirage, Wed Apr 4 10:17
- It can be very hard for parents Frashavan, Wed Apr 4 18:23I was a severe, chronic asthmatic from infancy. It must have been very hard on my parents. The only two things I know for sure was my Mother told someone once, and I overheard, how much she hated... more
- In my case, I stammered a lot until in High School (nm) Baruch, Sat Apr 7 08:50