I've tried to parent Duckie as though she has the diagnosis because, frankly, it works better for her. She needs a certain amount of predictability to get through the day. I did role playing and we made up our own social stories to help her through rough patches when she was younger. I have encouraged her strengths/talents and made sure her obsessions and peculiarities didn't take over her life and prevent her from having new experiences. I have monitored what she eats, kept journals and mood charts, and gave her brushing sessions and joint compressions and carried ear plugs wherever we went. I braided her hair every night for over six years so we could deal with our mornings better. I've sat up countless nights with her nebulizer ready to go and set the alarm to give her 'round the clock Benadryl when needed. I've dragged her from specialist to specialist and hand chose every academic avenue she's taken to give her the best shot at being a happy, well-adjusted and productive member of society.
And I'm exhausted for it. Really exhausted. I certainly don't have it in me to fight the good fight for future generations.
TM,
I can relate to this too. I think exhaustion is a huge understatement! I don't think there is a word in the English language that sufficiently expresses how drained, tired I was from dealing with the "snail like" pace that I went through on everything, and I mean everything!, with difficult child 2.
Yes, difficult child 2 is an Aspie and has executive functioning deficits, problems with motor planning and execution as buddy mentioned in an earlier response, but, and this is a big But, I truly believe that while some of his slowness is caused by his diagnosis, some of it, especially when he doesn't get his way, is intentional. When difficult child 2 was angry over having to either do something he didn't want to do, or not being able to have something he wanted, he attempted to manipulate husband and I, (especially me), through passive aggressive behavior. Some of his attempts were almost comical such as when he knew we had to leave the house and he would refuse to walk down the stairs. He would stand on one stair holding onto the railing, keep one of his legs lifted like he was going to go down another stair but would just stand there, sort of frozen, for what would seem like an eternity. There were times when we couldn't ignore him (time constraints), had to physically take his hand, walk him down the stairs. Of course when he got older, bigger, stronger, we could no longer do this. difficult child 2 is intelligent and definitely manipulative but in a very child-like way.
He also used to try (unfortunately sometimes successfully, school personnel didn't want to deal with his frequent, violent outbursts) these same passive aggressive tactics in classroom settings. I think that one of the problems we had with trying to get his passive aggressiveness under control was that he needed consistency between school and home. Unfortunately this never happened. Of course, if difficult child 2's passive aggressive behavior worked part of the time while in school, it only reinforced that behavior when at home.
I could ramble on and on and on, etc., about this topic! I hope what I've written makes sense as I haven't had enough caffeine yet this morning. However, as soon as I read this thread, it hit a nerve, just had to respond!
TM, you are one of the very best warrior parents I "know!!" You are doing everything humanly possible to give Duckie "the best shot at being a happy, well-adjusted and productive member of society. Wish I had some good answers for you... All I can do is let you know I think I understand having been there done that in what seemed at times like a never ending eternity in HE77.
Hang in there. From personal experience, things do get better. Thinking of you today, many hugs... SFR