Figuring out what I wanna be when I grow up.
Oop..I AM grown up...

Monday, November 29, 2010

Life On The Autism Spectrum - 2008

The following is a blog I wrote in my Myspace profile back in 2008.  I have to say, as an aside, that I kinda found Myspace unfulfilling after a while, because not too many people were all that interested in any serious kind of writing (not that there weren't pockets of thinkin' peeps). It felt like 50% wanted you to befriend their SUPER SUCKO band, and the other 50% wanted you to show them your t*ts.  But I digress...

Anyhow, here is how I was coping with stuff then.  We were living in surburban hell, my son was in nursery school and my daughter was just crawling, so it was a month before they were 4 and 2 respectively.  I'll do some updates in the future to see if we've evolved at all, har, har. 

At any rate, I'm posting this so that people will realise that perhaps when that kid who is too old to be having a tantrum is freaking out, he/she is not necessarily a bad kid.  And, to all the Moms out there who are dealing with a child with special needs:  you are not alone, sistas. 

January 4, 2008

Life On the Autism Spectrum

On any given day, I lie in bed until such time as my daughter is totally fed up with me, and starts hollering from her crib in her bedroom down the hall. I then drag myself up, give her a big hug, then change her diaper. In the meantime, my three year old son has already been and gone. He will have marched into the room, asked; "where's daddy?" I will tell him; "at work," and he will leave with no greetings of "good morning, mummy," and neither hugs, nor any indication that he is glad that I'm there.

As I change my daughter's diaper, and get her dressed for the day, Jack bounces against the couch, watching his usual morning cartoons. He has bounced so vigorously against the back of the couch, that our couch and love seat, which haven't even spent a year in our home, are almost completely dilapidated. I leave a sippy cup of apple juice in the fridge each night for Jack to find in the morning. My daughter is left in her crib with some toys as I get the usual fast-as-I-can bath. I brush my hair, put on my face, and get dressed. We come downstairs and I then assess whether Jack will be his usual self, or his more unbearable self that day.

Day in and day out I prepare the same packet of sugar-laden instant oatmeal; "cinnamon roll." There is no sense in buying any other flavour, as it will not be eaten. Each lunch and dinner I will carve the crust off two slices of frozen whole wheat bread. Three slices of cheddar cheese will be placed just so on the bread, so as to cover the bread as much as possible. If any of the bread has no cheese on it, it will be torn off, and left on the plate. If any crust is on the bread, it will be torn off as well. The sandwich is 'nuked' for thirty seconds, so the cheese melts enough to keep the sandwich together. If the sandwich falls apart while it's being eaten, this is a catastrophe, and there will be much screaming and panic. If a drop of liquid gets on Jack's clothes, be it water, juice or chocolate milk, said item of clothing will be immediately removed. Once, recently, I put a slice of deli ham on the cheese sandwich and Jack was outraged. The next day at lunch time, it took him a full hour to work up the nerve to eat his sandwich, even as I assured him over and over again that there was no ham this time.

At dinner the same sandwich will be served, along with a tiny portion of our dinner in a separate container. The food we're eating will not be touched the whole meal, but because progress must be made achingly slowly, I force myself  to show no signs of anger or frustration, but instead must smile and tell Jack that he did a good job eating his dinner. Oh, but we don't call it "dinner" these days, we call it "lunch." Dinner is a word associated with horrible food and coercion to eat it. Lunch is a relaxed time with cheese sandwiches, yogurt, and chocolate milk. Sometimes I can make hot dogs, and I buy the beef variety as this is the only way Jack will eat beef. I used to make mini breakfast sausages, but my husband bought maple and brown sugar sausages for change a few months ago, and Jack will no longer touch a breakfast sausage.

Jack will eat no meat, no vegetables, no raw fruit other than an apple, no rice and no pasta. I give him a multivitamin every day, and hope this helps. I believe what I have read in my learning travels is that twenty five percent of children who have a behavioral
problem also have eating issues. At various points during the day, my daughter Ella, is allowed to crawl around the house with me in tow, as babies require a lot of space to learn how to get around. Jack is a control freak, and finds this very stressful. He follows relentlessly behind, snatching everything she picks up out of her hand, fretting
that she is "touching the tv," fretting that she is touching anything he owns, and just being generally stressed that she is on the move in HIS home. Ella, at the young age of ten months, can already immediately tell when Jack is in one of his relentless pest moods. All he has to do is stick his smiling face in front of her, and she screeches in frustration.

There are stacks and stacks of paper around the house with various themes of drawings. None of these are made by my son. The current theme is "The Beatles," but drawings must be near-to-exact reproductions of cd covers, or pages from books. Recently, when neither my husband nor I could draw the "bass guitar" Paul McCartney was holding to suit Jack's needs, he became so angry he banged his head on the floor a few times.

Every day Jack and I talk about guitars—part of his obsession. Paul plays the bass guitar. George plays the electric guitar. On and on, over and over again. I could go on, but I think the idea is clear enough. My son Jack, back in August, was diagnosed as having "Autism Spectrum Disorder."

I find this all very confusing, despite all the reading I have done. Jack is a puzzle because he doesn't fit in completely to any one category of Autism; whether it is Asperger's Syndrome, or Pervasive Developmental Disorder (PDD). Certainly he doesn't exhibit traits of classic Autism. He doesn't flap his hands, or twirl his fingers. He makes eye contact. He tries to engage other children and people socially. Sometimes he doesn't seem to have any problems at all, and I feel guilty. I feel guilty that I took him to the pediatrician in the first place. I feel guilty that I had
this label attached to him. But then, he has his bad days, and I know that he is not like most of the children in his nursery school class, and when he's having a melt-down, I don't want his teachers to conclude that he is bad.

I find the whole Autism spectrum confusing. When I picture it, in my mind I see this great colour wheel, and a sign on it that says; "YOU ARE HERE."

It encompasses such a broad range of human behavior that is largely considered to be normal. It doesn't help when my own family doctor disdains the whole idea of Jack being anywhere on the Autism Spectrum. The world is made up of all different kinds of people, she told me. So what if he has no imagination (more specifically no imaginative
play)—he'll be a corporate banker one day.

I finally took my concerns to the doctor though when Jack was two anda half. There were two reasons: the first was that I could no longer take his behavior. His tantrums and general fits of temper were more than I could bear. Mostly though, it was because of my Mom. Medically inclined, and just generally more knowledgeable, having had twice as many children, she saw some signs that alarmed her. For instance, Jack never answered his name, after repeated attempts to catch his attention. I just figured he was engrossed in the tv show he was watching, that he wasn't paying attention. She could never understand why I insisted he just didn't seem to love me. All babies love their mothers, she insisted. Also, he never played with toys in the conventional way, i.e.; he never pushed a truck and said "vroom, vroom."

Instead, he arranged collections of objects into lines. Great long lines would stretch across our living room, and if they were altered this caused great distress. I was charmed: "he's going to be an artist!" I thought, admiring these lines. Turns out this was not so.

Yes, any child will line up toys at some time or another, but we have bins and boxes of toys that Jack does not play with because he has never known how. He also will not draw or colour while at home, aside from a few scribbles. It upsets him that the orderly picture of icons and logos he wants to reproduce from the backs of cd's and dvd's can't be reproduced properly with a child's skills. This makes for long days.

We saw a pediatrician though in the summer, and on her recommendation we have him in nursery school three mornings a week. He also has a resource teacher, which the community provides for free. He has made enormous progress in his social skills, and because he's Jack, his natural charm has brought him a long way with many people. He will paint and do most of the crafts at school, and he's even willing to sit for boring "circle time" most days. He has stopped hitting classmates, and his teachers after I coached him for weeks: "if somebody does something mean to you, or if somebody makes you angry, then you say 'Don't do that please!'" And what do you know—it

Everything rolls along quite nicely until Jack gets another cold, and misses a day of school, or his father is home for a week, upsetting his routine and creating intolerable chaos in his life. I often think that as far as Jack is concerned, it's one step forward, two steps back. Is that progress? Sometimes I wonder. I am, of course, still reasoning through a lot of things, and still looking for answers. And yes, there are all kinds of people in this world. I just want mine to be happy.


  1. my daughter used to "lime up" all her dinosaurs just like jack's cars when she was that age.
    thank GOD for the progress that come, however slowly, as the years pass.

  2. jack is blessed to have you as a mom, it's so hard being a parent, even when the child has no special are doing a great job. the one comment about him lining up his cars,and you thought he might be an artist, what do you know , he is,and a great one at that!

  3. Wow Karen I honestly do not know how you do it. It sounds exhausting. I met a quite a few kids from Sams last school with special needs. One in particular was on the autism range but did not have all the traits which frustrated the mom. She eventually found a place in Welland that these kids go to after school and for her she was able to connect with other moms.
    I hope as the years pass things get easier.

  4. yes Sherilin, progress does indeed come. It's good to look back on these times in our lives (for me, anyway) to see how far I have come.

  5. yeah, thanks Paula--he is an artist now! It's funny to think that a couple of years ago there was NO WAY he would draw.

  6. thanks Pam, they have in many ways, but I guess new challenges pop up all the time too. And yes--I am exhausted!


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