Living with Autism: A Parent's Perspective

Normally when our son is as quiet and as well behaved as we found him to be yesterday our first reaction is to haul out a thermometer “ he must be sick”

This does not really mean that we consider him poorly behaved but he is extremely active and high strung.  He runs around everywhere usually giggling and screaming interspersed with quiet moments playing the computer but even then he is louder then most children his age.

What yesterday involved was surprising. We took them early to the park at about 9 where we let the kids feed the ducks and then while the other two were playing with their mother I followed our son around the park. This of course is a necessity as our son is a high flight risk. On any normal trip to the park our time there is determined by how long before he decides he is going to attempt to run. Until yesterday there had never been a break in that pattern for at least a year. Yesterday we finally left when he started visibly tiring, with no attempt to run.

The remainder of the day at home he spent reading books or playing on the computer with little to no bouncing off the walls, another thing he does on a daily basis. He was for all intents and purposes an extremely well behaved boy for the entire day. He would have been considered well behaved for the day even without the normal autism behaviours. The fact his two sisters made every attempt to both in volume and in activity make up for his lack during the day almost like they did not understand the concept of a house being as quiet as it would have been otherwise.

Now to be expected the behaviour did not really continue into today by any means though as he was almost as wild as normal. There was one interesting bit of behaviour though when as soon as we got into the house this morning the first thing he did was to pick up his sister’s beach ball and start playing with it. This is something he has not done before, even though he has one of his own he never used either one for the entire summer until today.

This video by Temple Grandin that my wife found today has an excellent message for those trying to understand some of the challenges facing autistic children and their caregivers

I have a son named Connor
he’s not like you and me
when he was born he changed our life
in ways we couldn’t see

In his crib we hung up mobiles
he loved to watch them spin
but his cows never quite “jumped the moon”
as we sat and wondered when:

He would not communicate, or talk to us
we looked for any sign
but he didn’t progress in a “normal” way
he was “locked” inside his mind

And so began the visits
to the hospitals, and such
but when they came back they always said
“we can’t do very much”

So, special diets
and therapy we tried
to help our son in every way
as we sometimes sat and cried

He had no sense of danger,
could not tell right from wrong
he could not be left alone at all
we would watch him all day long

He would climb on tables and TV’s
would stand and reach from chairs
he was more adept at mountain skills
than he was on normal stairs

And if left alone in a yard or lot
he would just begin to go
there was nothing that would stop him
and he didn’t even know

Where he wanted to end up
it mattered not one bit
because hours and days could pass on end
before he chose to sit

He is now at a school
which is a very special place
where there are angelic saints who teach him
with care and gentle grace

Connor knows what he is saying,
he communicates by sign
he makes you understand him
it just takes a little time

We communicate by touching
there’s some things which give him calm
like running thread along his leg
or by massaging his little palm

He can’t play sports or army
and scouts and bikes won’t do
but there’s another world for kids like connor
that these people take them to

Its a place that lets them know
that they have ability and right
to participate in all we do
regardless of their plight

And while its hard on families
to care for kids like this
Connor has released me,
and has shown me what I missed

With my other kids I’d focus
on achievement and on grades
on pushing hard, cause it takes so much
to succeed in things these days

But Connor's goals are not the same
as they are for me and you
to watch him simply laugh and smile
he’s as happy as he can be

I go with him into his world
away from all the “stuff”
from the things that drive us crazy
which really is all fluff

He smiles and say's “I love you”
his way of saying thanks
“for doing this little thing with me”
he knows how much it takes

I think he knows more than he says
or can communicate to me
but if he wasn’t born this way
there’s a place I’d never see.

As parents of disabled kids
though hard beyond belief
they have a way of taking back
a small part of that grief

And God or nature works this way
by allowing us to deal
by finding something, however small
in a way to make us feel

That our efforts are not all in vain
that there really is a plan
that teaches us all to learn
“accept me as I am”

Though immune from all the problems
that most of us do face
he doesn’t care, he brings me there
to his special little place.

Well after a decent summer it is time for our son to get ready for school again as in only two more weeks he will be back doing his normal school routine.

We are due to meet with his TA’s and teacher before the school year though we have not been told yet when that meeting will be. One thing that has become evident over the summer is that it is highly likely that the school may need to do a new baseline to be able to move him forward.

The issues are depending on the situation good and bad. On the good he has become more verbal (with prompting or even occasionally when he thinks no one is paying attention) and he has become more adept with using computer tools. It also is appearing that his literacy skills are good though we are not absolutely certain just how good they really are, we are uncertain if he is attempting to read my books which are well above what I would consider normal for a 17 or 18 year old let alone a 6 year old, we know he is looking at them and as they have no pictures we question just how much of them he might understand.

We are on the bad side finding that on occasion his temper can get more extreme then we are used to originally, now the school had more difficulties with his behaviour then we did and we are uncertain if this is a release that he is no longer getting at school and so we get the behaviours. This said we still are finding he is showing no interest in hitting at his baby sister though his older sister he considers fair game.

Back to the plus side in the course of family activities this year we have taken him on rides this year that we had difficulties with in the past and found that he is quite willing to enjoy the ride this year rather then try to get out of the car or off the ride while it was in motion. It is worth mentioning that in activities this summer he is actually participating far more then ever before which is another sign of progress.

All in all i would say we are looking at a summer with some good progress and some setbacks but that overall it was a positive summer for him. The hope is as the school year gets closer and starts that he will actually continue to make progress. The reality we will see as the year progresses. For now we have the last couple of weeks of summer and a child who is behaving better then expected in some areas and that is a great thing.