New Diagnosis -- New Member

[Guest guest]

Hi y'all

I'm new to the group, SO happy to be here! I have an 18 yo NT dd, and an 11 yo

AS/ " Aspie " ds (He's not keen on either the full word or the 'nickname' for it).

We just told him this evening about his diagnosis. We've suspected this for a

long time, since at least 1st grade, but have had a difficult road getting a

clear professional opinion. His evaluations have noted profound 'behavioral'

deficits, but his aptitude testing (well above grade level) has seemed to throw

off the conclusions. He qualified for an IEP 2nd - 4th grade, but we were told

at the end of 4th grade that they could no longer justify them on the basis of

behavioral issues without an identified learning disability. He is in 6th grade

and failing everything except science (straight As). We've literally had his

head examined over the years, EEG, MRI, behavioral function evals, blood work,

you name it. He was born with plagiocephaly and tortcolis, so we've been alert

and concerned for developmental effects all his life. His 1st grade teacher

introduced the possibility of Aspergers to us, but we had a behavioral

specialist predicting his 'intensity' would be outgrown, a neurologist that

wanted to throw meds at the issue without explanation, other professionals

suggesting stricter discipline, combined with a well-intentioned extended family

reassuring us that he's just odd in the way all brillant people are, and my dh

relating so closely with him the refrain has always been that he was exactly the

same way as a boy, which I've taken a lot of comfort and some complacency in

since my dh is an incredible man.

Even though I've known my dh since high school and was aware of his history, I

hadn't considered how meaningful " exactly like me " really is. My dh was

diagnosed broadly as " emotionally impaired " , as well as having a severe hearing

impairment and thus was in special education throughout school, until his senior

year of high school when he transferred from out of state to here. We had our

daughter straight out of high school and started out in college together. I was

in my element but he struggled, so ultimately he opted to advance himself

through experience, which has worked well for him. He has an amazing inherent

logical ability to visualize, solve, innovate and master things that alude many

people. While that intellect can be charming in itself, people have gotten the

impression he's arrogant or aloof, which I have perhaps enabled. My admiration

of him was for the longest time practically worship, and even as I've matured

from placing him on a pedestal, my NT mind is still blown away by his beautiful

mind. My instinct has always been to be protective of him against criticism and

explain that he's hearing impaired and so either didn't hear you at all, or

didn't hear you enough to take his cue. His speech is not effected so people

really wouldn't guess and he's rarely worn aids because they annoy the piss out

of him on a tactile level, being in or on his ears and incessantly chirping. Now

I realize that missing cues isn't exclusive to his hearing impairment. Add to

that, what he would say to people was often worse than what he wouldn't. For

many years, until he was about 25, and even occasionally to this day, his

remarks were so blunt or harsh, people were shocked and I was appalled. I would

attempt to 'cover' for him in social situations, smoothing over things he'd said

to people, and then later privately chiding him for being so " tactless " . I had

no idea he didn't honestly get it. He's put up with a lot of moody drama from me

over the years, so I've accepted any perceived flaws of his as much as he's

clearly accepted mine. When I think about it, his nature may well be the saving

grace of compatibility in our marriage! He's generally least affected by my

moody drama and that's a good thing for me!

Optimistically speaking, I think it may be a real asset that my dh and ds are

much alike, though I'm so glad I decided this school year that at the very least

our son needed outside counseling. He's been miserable, and we've run the gamut

from tough love to tender love, but as my son might well accurately wonder -

what's love got to do with it? lol. I'm realizing I need a less

emotionally-driven approach.

Our NT daughter is a social animal. She's off to college, just an hour away. She

comes home on weekends and keeps her waitressing job down the road here to earn

spending money for the week. She wasn't planning to pledge a sorority because

her schedule is full as it is, but she received an invitation and has decided to

" go for it " , which effectively sums her outgoing attitude. Her brother has had a

difficult time adjusting to being without her here most of the time. I think he

relied a lot on her helping him navigate the social dynamics of life, which is

as natural to her as breathing. She drove him to and from school all through her

senior year last year, rescuing him from the bus with all its " people

pollution " . She helped him shop for " cool " clothes, coordinate them, get into

the routine of laying them out the night before, and agree to a rule that he

wouldn't wear the same thing twice in a week, even when Mom has them laundered

and returned soon enough to do so. This year, he has a morning routine with Dad

which is going smoothly, but he misses his sister a lot. Since soon after she

left from being home for Xmas, he has been sleeping in her room. I didn't want

to indulge him on that, I wanted to insist he sleep in his own room, but every

night it was something. The pipes in the wall of the bathroom next to his room

disturbed him, he never liked the location of his window - which can't be

changed - but suddenly it was intolerable, his bed is uncomfortable, etc etc,

but I've been dealing with fussiness like this from him all his life and I'm

weary enough to yield when I think the benefit may outweigh the potential harm.

I'm trying to learn to choose my battles, or I'd be at it constantly. He sleeps

in his own bed on weekends when she's here, so I think the issue really is that

he wants to feel connected with her while she's away. I don't know if its the

right thing to do or not but I've been letting him sleep in there.

Telling him tonight that he has Aspergers was difficult. Not only trying to tell

him in a way that would reach him, but getting him to stop chewing on his shirt,

or tapping on the table and listen. I've been reading " Quirky Yes, Hopeless No "

and have found it SO very helpful in understanding him, and indeed, as I've

shared, in gaining a newfound perspective of my dh. So I tried appealing to his

visual preference and wrote the word Aspergers on a piece of paper for him to

see to accompany what I was sharing verbally. After getting him to bed tonight,

I went to clear the table and found that he'd written " sucks " under the word. Oh

boy. I'm looking forward to his counseling appointment this Saturday, as well as

learning here and through other resources how to provide the best support for

him.

***Ronda Lee***