Trials & Tribulations of Being a Parent of an Autistic Child

When I decided to write this, I really wasn’t sure where or how to begin.  Before I even joined Twitter, my friends knew I had a son who has autism.  Note I did NOT say ‘autistic son’.  He HAS autism, but that’s NOT how he is defined.

Then I wondered how far back should I go.  Right to the beginning?  That would take up too much of my time for writing it, and yours for reading it.  So I think I’ll just break it down as to the successes we have had with him, and of course the downfalls as well.

When Brett was little over 2 yrs old (28 months old to be precise), we found out he had autism.  The doctor (or lack of a better word) gave us the news with a smile on her face.  One I wanted to smack right off, but I was too much in tears.  She gave me a sheet of paper, with a list of websites to go to, all on autism.  AND that if we decided to have any other children, they would be worse and worse on the scale.  Well you can imagine, that scared the shit out of me.  Though, I wasn’t in denial either.  Far from it.

We got back to our apartment (that’s where we were living at the time), just in time to put Brett down for a nap, my husband had to go to work, and then I hit the internet.  I needed information and I needed it now.  I wasn’t about to bury my head in the sand and do nothing, nor was I going to say, “they are wrong”.  Who am I to second guess 7 DIFFERENT SPECIALISTS who done the initial assessment???

Well Brett was diagnosed in May of 2000 and after loads of papers to sign, we managed to get him into an awesome daycare/school by October.  Yes it can take that long to get the services your child needs, and if you don’t jump at it, then that’s time wasted that could have been used to help him/her.

They helped him with loads of things.  From fine motor skills, to work time, and even appropriate play.  They even had classes for parents, so we would know how to respond to things as they would arise.  The work time I have to admit, was hard for me to watch.  He had to learn to sit at a small table and do work.  And what I mean by work was that, they would have different things for him to do.  Such as matching, sorting, things that we automatically do everyday, he had to be taught.  But the hardest was to watch as there was a worker sitting in the chair, holding him in front of her and doing hand over hand work, all the while he was screaming and crying.  Trust me,, I had to look away so many times.  During this process, his sessions was being filmed.  And I have a copy of it to watch (I tried, had to stop) to see how he had progressed.

We also had services arranged to have a worker come to the house and do more work.  I know what you’re thinking.  “That poor kid”, but that poor kid is now so much better for it.  If we didn’t do the hard work to get him to where he is now, I really don’t think I could cope.  He had the daycare from 8:30am – 2:30pm, Monday – Friday, and at home, he would have ABA for a few hours.  Between the daycare and home, he was getting 30 hrs of ABA a week.  Weekends were another matter.

This went on for about 3 years.  By the time he was 5, it was time to get him ready for Kindergarten.  This is when things started to go downhill, and fast.

Think about it, you’re 5, going into this big building full of strangers, and expected to be quiet and listen to the teacher and do your work.  How intimidating is that on a regular child do you think?  Well you can bet it’s 10 times that for an autistic child.  The anxiety alone would set anyone off.  Well, this is where they UNDONE 3 years of work, all in 1 DAY!!!

Because he was a little loud, they took him out of the classroom and gave him an ice cream to help calm him down.  ARE YOU KIDDING ME???  Brett couldn’t tell them what was wrong, if he was feeling upset, stressed, or even overwhelmed.  All he knew how to get their attention was to grunt and scream.  He probably found the classroom too noisy and with so much things plastered all over the walls, he had a MAJOR sensory overload.  And because of that, HE LEARNED that by screaming, he was taking out of the room.  Which is what he wanted.  Just because a teacher or a doctor has a bunch of initials after their names, doesn’t mean they know anything on what is best for your child.

But what really pissed me off was when the school called me up.  The Kindergarten class was going on a field-trip to a farm to see some animals they have there and to bring back a pumpkin.  She had the gall to ask me if he would be fine on a big bus?  I think they were hoping that he couldn’t go.  They were “afraid” of if he had a tantrum.  That’s when I informed her that he is used to field-trips, and that he’s been to that particular farm before.  I found that by using the word DISCRIMINATION to the principle, scared her.  As it should have, I’m not having some idiots who’s ‘afraid’ of a little tantrum to not allow Brett to be included into anything his class does.

One particular incidence happened when i was called to come to the school and get Brett.  Apparently he was crying and screaming for 45 minutes.  SERIOUSLY??? 45 MINUTES!!!!!!!  I had hubby take me to the school, I walked in and I can still hear him.  I asked the teacher who was with him, what happened for him to result in this, then she told me.  Of all the times I wanted to hit someone,, that day was it.

At this point Brett was in Grade 1.  And he was required to go from his regular G-1 classroom to another room to do some sensory work.  Well the distance from the rooms were about 30 feet, just to give you an idea.  Well he wanted to crawl that day.  So instead of letting him crawl (which would have been easier to do), she stood in his path and told him to stand up to walk.  Well he didn’t want to walk, he wanted to crawl.  So she picked him up off the floor, and “helped” him walk to her classroom.  If any of you know what I’m like on twitter, when it comes to my kids, I don’t take kindly to this sort of crap.

I can feel my face getting hot, and I’m willing to bet that she knew I was pissed off.  And I let her have it,, right there, in the hallway of the school.  I told her, “I’ve learned a long time ago what battles to have with him.  If he wanted to crawl from one room to the other,, let him.  Not like no one can’t see him.”  Oh I was very angry.  If she had left him alone, and let him do what he wanted, she would have gotten him to do his work, and I wouldn’t have had to go to the school for this BS.

Wow, this is the longest blog I think I have done to date.  I think I’ll talk about the diet in the next one.  Stay tuned, the diet topic is very interesting.

Luv & Hugs
Karen
xo