In the end, I do try to give as honest a description as I can render up. I haven't been running in 2 months. Yep. Embarrassed about that one. I am likely in depression, trying to avoid pharmacological answers to this one, but struggling. Not exactly proud of this one either. Our marital difficulties - well, they are more than I ever could have imagined coming from the two of us. Two people put in the worse experience of their lives together doesn't always produce the tight bonding moments Hollywood would have us believe. Will we come through this? I think we have to - but is sure is hard. We are both exhausted and unlike the exhaustion we used to have of just being parents to young children, this exhaustion has a mystery. You never really know what is going to happen to your kids or what their future might be, but with typical kids you can take certain things for granted: walking, talking, eating, toilet training, getting dressed on their own, learning to ride a bike, going to school, playing sports, making friends etc. What of these steps of development will occur with Zach "naturally" and what will require specific teaching methods? What can he accomplish at all?
After reading an article recently, I realized how scary the future can be. Say we get Zach talking, even going to school with minimal services, but not quite fully functioning - what is his future then? From what I am reading, most support services for adults are offered for those with IQ's below 70. There is a pretty significant group of kids who fall in the middle here - neither retarded and eligible for services/support nor are they fully recovered/functioning. What happens here? I read the story of a child who has an IQ of 170 - however, when someone approached them and introduced themselves to him, he turned to his dad and said "What am I supposed to say?" This is a kid who would beat the pants off of most everyone on just about every standardized academic test there is. Will he be able to function in the workforce where so much of the world is based on social skills and not just talent/abilities?
Whenever I get into a place where there are hard decisions to be made, I usually procrastinate and avoid people which usually ends up leading me to a sine (270) or a negative phase of my being: depression. Here I am, lingering. At some point an epiphany of sorts usually appears that everything becomes clear, and I go forward. Where is my epiphany? I am stuck out of phase with life.
The big issue plaguing me: Is Zach making progress that we are comfortable with? Answer: No.
Do we go back to a home based program? Do we add home services to the school program? Do we move to Rochester for better services? What about my Mom if we do? Is the ABA not right? Is it the service providers? What about the homeopath we saw - do we start down this path?
More biomed? Am I messing him up when I work with him at home? Uh... yes. Learned that lesson this past week.
Zach now wants to say "ting" every time he wants something from me whether it be milk, to be picked up, a food item - they are all "tings". What is a "ting" - ahh... think of a cheetoh minus the cheese. He loves these and they are very "reinforcing" for him. The developers of his current programs had decided to use them as one of the objects he requests (or using the Skinner language "mands") since they are so reinforcing to him. This was the only edible object on the list of 5 requests we make Zach say before providing the item/action. The other words on his request list are: squeeze, jump, train, and up (as in pick me up).
When Zach was home with what I believe may have been H1N1, I attempted to work with him. Out of all the words on his list, currently, the ones he finds really reinforcing at home are "up" and "ting". Indeed, when he was ill, there was no way to get him to squeeze, jump or train. Well, I think I may have overdone it on the "ting" because now he is overgeneralizing the use of the word - in other words - everytime he wants something from me, he seems to say "ting". They aren't seeing it as much in school, which makes me think that I am the royal screw up in this mess.
The overgeneralizing is likely caused by me not varying his requesting words enough. *sigh*
In the past month I have been told the following:
- DAN ! protocols don't work (diet, supplements, meds)
- He is high IQ - that of a 6 year old, do not put him in a intensive program.
- His program is not intensive and individualized enough.
- He doesn't need a special diet - he needs to address his physical symptoms homeopathically.
- He has "vaccinosis" and needs a treatment that will likely cause skin eruptions (boils).
- You need to find time for yourself.
- Zach needs more targeted and specific attention from you and your husband.
- You need to get a private program going for Zach.
- You should go back to work.
- You should do more advocacy work - you are good at it.
One day at a time, right? It doesn't work out that way when you are being told by some of the experts that every day counts at his age. You need to push, but not so hard that things break. Not so hard, that you cannot handle it. I hate the fact that this makes me weaknesses and failures so apparent. I hate the fact that my weaknesses and failures can be a huge detriment to my children.
He is happy. We have fun. I feel lost. Is this what life will be like for awhile?
Off to get Mom's orthopedic socks on and wash her hair. The life of luxury I tell you.
3 comments:
I have a blog that only a few people read. I can get really personal and let it out. You may try that.
I do get where you are coming from. My son is verbal but has a lot of learning disabilities. I try not to "go there" in my mind but it is hard.
(((Hugs))). I am thinking of you and hoping for the best.
I hope that this comes out in the most accurate way: You are trying to eat the whole elephant.
Yes, you need to focus on the treatments/therapies, and, like the rest of us, we will never know if the path that we chose was "enough" or "the best". After a while, you have to pray about it and have faith that God will do the rest.
The future? When he is an adult? How about getting to 4 first. :-) Seriously. As an engineer, you know that you can't accurately forecast any of that because you don't have all of the data. Stop trying. Truly.
xoxo
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