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Tuesday, May 15, 2007

Scheduling the autistic child

When your child is diagnosed with autism, there may be a tendency to panic. [translation = probably only me] It is quite possible that panic will prompt a parent into frenzied activity. [translation = research ‘fix it’ yesterday, but faster] After this phase when the fog lifts a little, it may be that the parent sets some goals, tiny ones. It is a good idea to identify some trivial matter that makes life exceptionally difficult and work on that little bit only. [translation = baby steps] In our family circumstances, I decided that henceforward, we would collect the mail from the mailbox every day.

Let me explain. The mail comes daily and is placed in the mail box on the fence in the garden. I found that I was unable to leave the house and the mail would accumulate day after day, much to the annoyance of the mail carrier. The problem, was that if I left the house with my children inside, they would panic during the minute and a half that I was absent, even though I was clearly visible through the huge windows. [translation = out of immediate "visual" contact equated to abandonment or worse] When I returned to the house, I would have two small children in a state of serious distress who would take some time to calm down.

Neither child would venture outside of the house to accompany me, because ‘outside’ was hated. I could overcome this difficulty by carrying them both outside with me, as the tight grip was calming to them. [translation = deep proprioceptive input] However, if I had a child on each hip, I had no spare hand with which to retrieve the mail. Often I overcame this, by collecting the mail at night when they were in bed. Often, I was so tired, that I would forget to collect the mail at night.

So that is why I chose this one [of hundreds] issue to tackle. We worked on this daily. [translation = even on Sunday when there is no delivery] Day after day, week after week, month after month] It never become ‘preferred,’ it always remained a chore. [translation = surrogate therapy] but gradually the screaming became less so, small feet were exposed to ‘outside’ and the mail didn’t get soggy or fried, depending upon the season.

I learned so many things from this tiny ritual – aversion to the texture of paper, his ability to read upside down, that opening and closing the box was a feat of sequencing, gross motor skills and ideation, that we could take turns, that sharing was not an impossible goal, ………..I could go on, but you get the general picture.

These days, because they are all at school, I can collect the mail myself, at leisure, read it all and take appropriate action for each piece in peace. Today, one of my sons is off colour, ‘PH,’ which means a sick day at home. [translation = potentially hazardous] Nothing dire, just one of those fleeting temperatures first thing in the morning,[translation = fever] that disappears on the cue of the school bell. [translation = but likely to rise at some random and inconvenient time of the day]

Since staying home is everyone’s preferred option, I must take care not to reinforce the fun of being at home. There are a couple of other factors as well. Not only is being at home preferred, but being at home ‘with mum’ is even more preferable. [translation = I am truly the most popular person within a 25 yard radius of my own house] If that isn’t enough joy to dispel on it’s own, then we must also factor in the ecstasy of ‘being at home,’ ‘with mum,’ AND no competition. [translation = no siblings or father] Now you have an autistic child in heaven. How could one possibly hope to make this experience a negative one, short of sticking pins in the poor child?

It is a sobering responsibility to know that you are the most popular person on the planet due to an accident of birth. [translation = your status is undeserved] I could sit on the sofa with this one all day just cuddling, [translation = cuddling and proprioceptive input] and he would be happy and content. A day spent in this manner would guarantee that he would never again visit school. [translation = or anywhere else for that matter] Such behaviour would reinforce all his ‘prejudices.’ [translation = lock the door and throw away the key, grow roots and remain inside forever]

As the garage door closes, I watch his body contort with barely suppressed glee. I can see every one of his pearly whites. [translation = teeth] His eyes are cartoon moon slits. He shivers and trembles with delight. I visualize pin cushions, small ones. What to do? We do the full body hug, a jitterbug affair. My brain groans with the effort of summoning up little positive pricks. He bounds away from me to pounce on a cat. Cat and boy gambol on the carpet whilst I make a list of activities to take us through the day, not too taxing but just enough to take the edge off bliss. I look around at the interior of my house, buried in piles of jobs. [translation = chores that have no hope of completion today]

How to get the balance between rest and activity, when his asthma is active? I know that we must avoid the spelling test part of his homework. [translation = physical exertion and aerobic, see note below]

“What you do?”
“I’m making a list of all the jobs I have to do today?” He continues to roll back and forth on the carpet. All of a sudden he is by my side, my companion, my bosom buddy, my number one fan.
"You are write dah list?"
"Yes."
"Of dah jobs?"
"Yes."
"What you have one?"
"Nothing yet, I'm still thinking."
"I have dah idea for the one!"
"Oh really! And what might that be pray?"
“We can get be getting dah mail, like we did in dah olden days.....together...jus you and me..... er….....pleasssssssse?”

Note – spelling tests in our home are a busy business. [translation = preferred] Each spelling word is written on a card. The cards are scattered on the carpet around the trampoline. Whichever child is having the ‘test’ bounces on the trampoline. I call out one of the words after about 20 bounces. The child scans the carpet whilst bouncing and then leaps off to pounce on the right card, reads it aloud and then hands it to me. Yes, I am aware that this doesn’t teach them to spell. Yes, I know that it is cheating. Indeed they will not be able to bounce through their spelling tests at school. What exactly is the purpose of this exercise? [translation = it’s "FUN"]

8 comments:

Angela said...

I just found your blog and I can't wait to read more! It's amazing how "normal" being different can be. I have a son, Jack, with multiple special needs (born at 25 weeks, cp, seizure disorder, dev. delay) and he's the light of my life (along with my neborn baby girl Miss Morgan). I can't wait to read more about your family!

mumkeepingsane said...

Our equivalent to your getting the mail was going grocery shopping (stressful with even the most 'normal' of children I know but I was tired of getting groceries by myself at 8pm on a friday night).

That trampoline/word game looks fun. I'm thinking Patrick would enjoy it very much.

Anonymous said...

Farming means that going places isn't a "by yourself" chore I always take them with me so going out... is a minimal issue. Even yesterday with the wacky weather - the chg in pressure bothers them - the little one covered his ears in the mall (music) but no meltdown.

My problem was interacting with the little one. I learned while he was enjoying a book to slowly move closer and closer (careful or he'd pick it up and leave to read in peace)... and now... we read them together. Takes a while but it happens.

For spelling every morning last year the eldest wrote out his words in a work book (no lists home this year). He got the original every day, he memorized them just by writing them out independantly. But he's got NVLD.. and that photographic once learned, sticks forever memory which helps :) Wish I had it, I have trouble memorizing.

I'm a champion.. let's mess with the routine.. MOM :)

S

Melissa said...

My Little Bug prefers school :) He likes to be home too, but he still really enjoys his classroom and teachers. I hope it continues to be that way. :)

Unknown said...

Oh my goodness-"get mail just like in the olden days."

I'm sorry I would melt and nothing would get done.

We're learning how to keep our elbows down when we eat.

Heidi said...

Here our Sami has to feed Donut (the dog) every morning. It never happens unpromted or unassisted, but at least we do it - his little contribution to the household chores. Of course, it would be easier and quicker for me to just do it myself, especially as he likes to run his fingers through the dog food and sometimes eat it.

Phoebe said...

Ah, just what I neded to read.

Bede has asked *twice* in the last two weeks "want it shirt japans shoes okay come on let's go I get you grocery store!"
[translation japans = Bedeish for pants] [translation pants = trousers or have you been in the USA for long enough that you don't snigger when someone says 'pants' :-P ]

kristina said...

Funny but I was just thinking about the motivating possibilities of learning while bouncing on a trampoline-----hope your trip to get the mail (as in "olden days") was golden!

 
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