Monday, November 01, 2010

Halloween made me cry

SR now knows he has Asperger's, he does not know all of the details, who does? There is such a variance on the spectrum. We had our feedback session at the psychologist the other day, and he asked to go, I called the Dr. making sure it was ok. So DH and I did not get our entire feedback session, re: all of the testing yet. SR had a lot of questions, was fidgety, and did not like the word autistic. After the session was done he told me he felt "lighter". Mission accomplished.

SR has been doing so well, that Halloween seemed like it should be ok. He chose to go as sodium chloride, PN went as a hula girl. We have a great neighborhood for trick or treating, so I decided to have company. We had 11 folks here. He avoided the crowd, and idle chitter chatter for the most part. Too much blah, blah, not enough discussion about chemistry, or biology. Too much talking, too many people. Too many social expectations that do not make sense to his wiring.

He ended up in sensory overload, needing to touch people, and smash into them, being too excited at one point when the kids were playing in the basement. He pushed his Sister when out trick or treating.

So why was I such a wuss? He has not done this in a while, I felt bad for putting him in an awkward position. Seeing a "normal" 8 year old, in the same house. It put me in some weird state of blinking orange light overload. After the lights went down, and the house got quiet, I had a moment. DH and MIL trying to comfort me over "at least he knew when to go to your bedroom and be alone and watch cartoons etc.....". I am an extrovert, as is DH and PN. Even SR is extroverted, and enjoys people, so it makes holiday time a curse of sorts. As much as he adores people, he really cannot stand the chaos of company for very long. Which means the Holidays are just hard. I cried because there are moments this syndrome seems sooo unfair, like the most cruel thing to place on a child. It makes me angry.

I have tried to explain to many people over the years, the anxiety of having a child like this. It is like being in a tornado watch all of the time. My Motherhood light blinks all of the time. Most of the time it blinks yellow, but when it blinks orange or yellow for excessive amounts of time......not fun. With PN, my light does not blink all day, it rarely turns yellow. SR's Mom light is on all of the time, going from 70% yellow, 10% red, and 20% orange. The orange, and red places are not fun.


vw bug said...

No advice. I can't deal with my own problems but I read you and realize I'm a small fish. Just some *hugs*.

Bou said...

My Mom lights come on for completely different reasons. We just have different issues in our home as you know. I now have anxiety attacks that I didn't have in the past. Certain things trigger it. And it's only with Bones. With my other kids, my 'light' does not come on, but with Bones and with the light staying on, blinking constantly in different states, it has damaged me. I can sense now when my Mom light could 'possibly' go on and I will have a full on anxiety attack. I am hoping now it is not permanent.

And you're right... its not fair. It seems sooo unfair to him. It would make me angry too.

Guard Wife said...

The Mom lights you describe were something I didn't know I was equipped with until April when M3 joined our family. They are blinking/flashing/interrupting every silent moment I might have and have been doing so, non-stop, for seven months.

I'm fried.


I'm to the point now where I don't even know if it's her sometimes, or just me. She's damaged my equipment to the point that I can't even trust it anymore. I need a break.

Let's plan to have a drink together soon.

farmwifetwo said...

I've been doing it from mild non-verbal PDD to mild NLD now 11yrs. I've been doing severe, non-verbal PDD to non-verbal autistic disorder for 9yrs in a couple of weeks.

Time to stop appologizing for the child and make the child take responsibility for his actions. If he chooses and requires alone time... that is fine. If he acts out instead of taking that time... not fine. There are behaviour and social skills programs out there - find one that works for your family. If he can memorize the periodic table he can learn correct behaviour, with coping mechanisms that are correct for his needs.

My 11yr old according the child psych is one of those children for whom it'll never be his fault - and he's right. This year, with agreement from the school, he is on his own. Should he ask nicely - and he's been miserable lately at home, fine at school - I will help with his homework. Otherwise... pass or fail, it's his problem. I cannot do the parent child wars anymore. I have a 9yr old that all of a sudden is making HUGE gains in speech and language and I'm tired of shafting him.

My 9yr old is also easy going, happy, social etc. Eldest is social, moody, and soooooo hard done by.

Remember the teen years are coming... he needs to learn to live him with himself and others before then.

farmwifetwo said...

Programs.... I should have told you some of the ones that work and don't.

There's a woman an hour north of us that does a social skills program.... after school :( :( We can't get there from here. Something like that, with other kids, roll playing, tokens and treats.... is what to look for. So, we wing it at home, luckily being social, village etc, we have been able to do Scouts, library program, school... the "village help raise the child" thing. For him (11yr old) his bed has always been "safe"... he chose it, even as a baby he calmed in his crib... to this day, he's had enough you'll find him playing the DS or his mini-DVD player on his bed. Yes, I know he's not being "social"... BUT... it works for him and we're not all frustrated and mad over behaviour.

Taking the kids toys away and giving them back for good behaviour/speech... This IMO is a joke. IBI/ABA wanted us to do it to get the youngest to talk. The child psych wanted us to do this "if you behave for so long you get".. OK, (a), they share toys and books and movies... not going to work (b) how do you expect them to be good with nothing to entertain themselves with?? One of the stupider ideas IMO I was ever told. So I do it the other way around, meltdown.. and that toy is GONE for X period of time.

Token systems... same as the one you used to toilet train. IMO too much work at home, but seems to work well at school. Especially when it involves free time on the computer etc.

Social stories... and since he's doing well academically, why not get him to write his own. For ex. "Tonight we are having friends over. I enjoy having friends over but have difficulty in crowds. When I get overwhelmed I feel (let him describe it). I know I should keep my hands to myself, I do not like it when they touch me, and it is not nice to touch them. When I have had enough, I am going to go to my room/parents room where "x" activity is waiting for me. I will return to the party when I feel better."

Then he's recognized the signs of being overstimulated, how he reacts, that it isn't appropriate, and his coping mechanism that is ready and waiting should he need it. Use them for transitions, new activities, new social skills (working with other children, playground survival etc)... Eldest still likes googling for new activities. ie. Going to Great Wolf, seeing it on the computer, getting a copy of the directions... I tried to make do without that step... lasted 2 days... I knew better (add to the parental guilt list :) )... it's how he copes.

KISS method. Short, easy to remember rules, short, easy to remember consequences, give child control of program, actions and coping method that works for him.

You'll lose less sleep and he'll feel better, cope better, because he's in control.