Falling into old (and new) routines…..

Time is getting away from me lately.  Timothy was fitted for his bus vest today as he is harnessed into his seat (picture a straight jacket without the arms and four hooks!)  lol, just kidding-but really that's what it reminds me of.....  the last three months of school he had some major behaviour problems on the bus.  He would scream bloody murder and thrash about sometimes hitting his head off the windows-I swear this kid has a HIGH pain tolerance.  In essence, he drove his parents, sisters and especially the bus driver completely bananas when we had to go anywhere.  The behaviour therapist thought it was for a reaction, but really?  Aren't there better ways? 

We actually drove to Florida and back with him doing this, talk about bananas!

I took our two girls for haircuts today-not sure if I've mentioned I have other children?  Skylar is now 11 and boy-band crazy (UGH) and Casey 7.

(Picture added of their “do’s”.)

They are pretty excited for grade six and grade two at Ecole Dufferin this year.  I’m not too sure about Timothy, but I’m pretty excited for him to go to school as well.  We have had several “close” calls this summer with him being such a high elopement risk.  Jake has installed chain-locks on the door that drive me crazy but help to keep Timothy in the house and safe.  The screaming has died down fortunately, and is fading away like the summer sun.  Timothy will get his haircut here at home a la Daddy’s clippers.  Every time it gets better.  We started off with the two of us wrestling him in the bathroom, screaming (mostly from Timothy) and now have progressed to a one man job with Timothy in a chair.

I hope to one day be able to take him to a “real” barber shop when he can tolerate it.  His sensory issues make it extremely difficult right now.

Another success to report:  I got a toothbrush in!  Sounds funny, or maybe gross to some, but we haven’t been able to brush the boy’s teeth, like EVER.  He is five years old.  Yep, I know.  We have tried everything.  Washcloths, letting him play with the brush, fancy toothbrushes, ones that vibrate, etc etc.  We did a painstaking study with an occupational therapist for weeks……you could not get a toothbrush near that boy.  The therapist once related it to nails on a chalkboard for him. BUT!  I have been able to “brush” (touch his teeth) with the toothbrush twice in the last week.  Amazing.

Add it to the list of things I’m becoming grateful for these days.  Tiny, little things many take for granted.  Timothy has become my greatest teacher in life.  He teaches me to appreciate every precious moment.  When life sucks, when it doesn’t.  I appreciate whens its just being “ok”. 

In response to “One Pissed Off Mother”

I have really tried to ignore your ridiculous letter. I have. But I have a few questions. If you are reading this, without knowing me or my little blog, could you please look at the pictures in this post. Tell me which of those beautiful children are autistic? (“retarded” according to you). Can you choose one?

I bet you would be surprised to know that it is my son who has autism or what you called “mentally handicapped”. His name is Timothy. He is a sweet little boy who has no idea he is any different than anyone else. He does not know what hatred is and I pray he will never meet someone like you in his lifetime. He would never understand why someone having never met him would already dislike him so much. Like Max, the harmless boy you referred to in your letter, Timothy does make a lot of different noises,etc when he plays. Most of the time when he is happy. You see, autism makes his brain function differently than yours. He is no less of a person. He still loves, thinks and feels. He just expresses it in different ways. I wonder if you would think he was a “wild animal”? 1 in 88 people are afflicted with autism. I bet there are at least a few with autism spectrum disorders in your family tree at those numbers? If you don’t already, I bet you will soon. Autism is affecting us all like it or not.

I pray that you see the error of your words and the community’s response to your letter. YOU are the minority here.

Picking up the pieces… (and trying to keep them all together)

This morning, I woke up late (0830), and went to open Timothy’s door (he has child locks on the inside for safety). He had been busy. His whole room strewn about and the best part: his Thomas the train bed had been dismantled and when I opened the door he was in the process of removing the support beams underneath his mattress! I had to laugh. The boy is smart, I give him that. Now, can he put it back together?!

Back to the story. Where had I left off? Oh yes, the waiting game. I call it that because of the ridiculous “system” that health care has. 1 in 88 children are on the autism spectrum now and Ontario has no means to support them. Its a national crisis really. I digress…..

So Jake and I, who really knew nothing about autism until this diagnosis was thrust upon us, were left to wait and really navigate it on our own. Begrudgingly, I turned on the computer and started researching autism. Funny enough, I was still in denial and didn’t search long. Did looking for help mean it was real?

Thankfully, we did have one resource: a behaviour therapist we were able to utilize in the interim. She was great, she really was. Best of all, she liked my kid. That meant so much at the time. I was unsure how to deal with his behaviours because I didn’t know how to treat him. Were they “autism” related or plain old bad behaviours? I didn’t want to punish something he couldn’t help. I’m not sugar coating here, we were ignorant. We knew nothing about autism or how to deal with it. Autism was like Rain man, wasn’t it? LOL.

So with the ace of the BT in our pocket, things slightly improved. We learned we should treat Timothy the same as our other kids. Make life as normal as possible for him. Easier said than done.

As I mentioned before, it was HARD to take him anywhere. A grocery store strip took planning. I had a backpack of things to prepare for “just in case”. Books, small toys, snacks, drinks, diapers-you name it. By this time, Timothy was 3 years old. We learned later that he may be reacting to sensory overload.

Just for a second picture this. Imagine you are hyper sensitive to SIGHT-SOUND-SMELL. Grocery stores have those uber bright yellow lights. Lots of people. And the noise…cash registers ringing and banging, people talking, walking. Carts screeching and making odd sounds. Weird smells, good smells, bad smells. Starting to catch on?

Many a trip ended so abruptly with him screaming, tearing at his clothes and hitting me that we left everything at the store and had to leave. Lots of times both of us crying. It took about twenty minutes for him to calm down. Often he had to scream it out. When I couldn’t bear to listen anymore he would be segregated to his bedroom. Boy did I feel bad when I became to understand him more but it seemed to help. Cuddles when he calmed down enough to be touched. So I stopped taking him to public places. I didn’t know how to cope with him and the embarassment (at the time). Boy,people are judgemental! One older lady suggested I spank him, others just glared and shook their heads at us.

I won’t lie, I used to be one of those people. When a kid was being obnoxious in public, I would automatically blame the parents. But you really have no idea what is going on with those families. Can they help it? Or are they just trying to do the best they possibly can, like me?

First Steps: Landsdowne

As we were newly relocated to Brantford, the specialist referred us to Landsdown Childrens Centre.  It was here that the medical director himself (Dr Mc) conducted a two hour assessment on Timothy...yes another.  I will preface this by saying that this assessment was in January 2010-about 5-6 months after the initial diagnosis.  During this waiting time we had blood drawn from Timothy (pretty UNfun) and sent away to a special lab in Kingston where he would be tested for specific chromosomes and Fragile X.  They all came back negative.

The good Dr came to the same conclusion.  Yes, your son is on the spectrum.  Although, quirky, DrM impressed me.  He was on all fours trying to play with Timothy much of the time.

So now what?  Another referral.  This time for an occupational therapist, behaviour therapy and a caseworker.  Our caseworker, (AM) was lovely and seemed genuinely interested in helping us and providing us with any and all resources available.  Because of our vast (cough cough NOT) income, unfortunately many grants and tax breaks were not available to us.  Actually, if you are a family of five that brings in over $35 K a year you are deemed not in need.  Hmmm (insert eye roll).

Behaviour therapy was a six month wait.  Occupational therapy 6-9 months. 

I actually dropped down my work schedule to only part time weekends during this time in order to be more available for Timothy and "his" schedule.  Financially, things were not good.  The bills began to pile up and so did the stress.  But we did what I think most people would do and put our children first.    I began to take in a couple children during the week to help offset the shortage in income.

Speaking of the other children, they began to act out in different ways both at school and at home.  Casey began getting calls home from school for different behaviour issues.  My husband and I were being pulled in every which way possible with no time left for ourselves. 

Timothy began the first of many behavioural problems.

The dreaded smearing. Yes, its what you think!  When put in his room to sleep, whether it be for nap or bedtime, he would remove his clothes and his diapers and POOP!  He would fingerpaint his room.  You name it we tried it.  Even down to duct tape.  He was Hoodini I swear.  I removed the paint from the walls in his room from scrubbing them so hard.  Our new carpets stained. 

Second issue:  screaming and tantrums.  Whether it was frustration from lack of being able to communicate his needs, the terrible twos or sensory issues, Timothy screamed.  He screamed from dawn until dusk.  During this time Timothy "napped" every day for two hours.  He rarely slept, but I needed the break for my sanity to be honest.  I've never felt so stressed as I was during this time.  I loved him but damn, I did not like him like this.

Issue three:  Flight risk!  Timothy didn't and still does not have any concern for safety.  If there is an open door, he's gone.  Basically you need an eye on him at all times cause boy, he's fast!  Example:  My parents were visiting from Cobalt, and someone accidentally didn't latch the door closed all the way.  It wasn't noticed for several minutes and yep, you guessed it!  He was gone!  911 call, me hysterical, my son walking the streets in a diaper and barefoot= the whole kit and caboodle.  The issue at hand at the time was that Timothy did not even answer to his name at that time.  Very dangerous.  Luckily, he headed straight to the park two streets over where my husband found him.  We were all quite shaken. (Now there are child proof handles on our doors with chain locks).

So back to what I was saying, where are we left in the midst of all of this waiting?

So what to do in the meantime?

 

As of today I"m ousting myself!

So here I am.  I'm laying it out there for all to see.  Its not a pretty story, full of mistakes and learning but its mine.  I hope that someone out there can relate.

I'm a pretty regular person I think.  My name is Tricia. Born in Woodstock Ontario, to Wolfgang(yep you read it right) and Cynthia in 1981.   Parents eventually divorced and we moved to London.  Then again in London.  Then to Kirkland Lake.  And finally to Cobalt where my Mum remarried to my stepfather Richard.  Four elementary schools in four years.  Not a great time but we survived and in the end I guess it made my backbone stronger.   Near the end of high school,  I ended up living with my Father in Kitchener and his common law partner in 1999 which is where I met Jake, my husband.  We actually met in a chatroom on the internet.  HAHA!  Had my first babe at 21, Skylar in 2002.  We lived in his mother's basement in a one bedroom apartment.  Cheap and it did the trick (thanks Deb if you're reading this).  Eventually I got tired of working at Tim Hortons for crummy pay and applied to nursing school.  It was hope on a limb, as I was still four credits shy of graduating high school.  But!  Mohawk college accepted me to their Practical Nursing due to my exemplary (ahem) grades in physics.  So off we moved to Hamilton and 18 long months later I was a Registered Practical Nurse.  Shortly thereafter, I began to work at the St Josephs Centre for Mountain Health which is a psychiatric facility.  I work in Schizophrenia services.  Mostly I enjoy my job but I longed for something more, more opportunities. In 2006 came Casey Nicole, another little girl.  Jake and I married in September of that year.  In 2008 Timothy was born, weighing 9 lbs, 15 oz.  Finally Jake had his boy!

Everything about Timothy was beautiful and he had a wonderful demeanor.  He breastfed as long as I could keep him full and ate well.  Timothy didn't crawl, he walked.  He met the typical milestones until approximately 9 months.

Things began to change shortly after his first birthday.  It was as if he hit a wall.  Timothy withdrew socially.  From everyone and everything.  He preferred to play alone and showed no interest in his sisters or anyone else for that matter.  Where had my bright and happy boy gone?  Timothy stopped eating pretty much everything and hated to wear clothing, including diapers.  He would pull and rip at his clothes.....it made no difference what he wore, he wanted it off.  He would make odd gestures at objects.

Fast forward to that fateful Dr's appointment.  Me, blubbering like an infant.  Mercifully that ended the appointment and I was handed my(his) fate on a small appointment card.  We were being referred to a pediatrician.  In my heart of hearts, I still held hope that things would be alright and that I would wake up from this terrible nightmare.

No such luck.  Six long months later and we were sitting in another Dr's office.  Ninety minutes later in his office and he said the words that I will never forget and even tear up typing.  Your son is autistic.

Once again, the floodgates opened and I wept in that office.  I wept for my child, I wept for my family and I wept for what I thought was lost.   For you see, life wasn't over for him.  Timothy was not dying, but at that very moment I was grieving.  I grieved for almost a year.  I couldn't talk about his diagnosis without crying and just thinking about what could have been sent me off the ledge.  My husband seemed unaffected on the outside and often told me "he'll be fine" or "he will grow out of it".  I began talking to God.  I was angry.  What did I do to deserve this?  People would say to me, "God wouldn't have given you a special needs child if he thought you couldn't handle it."  Really?  Cause I don't seem to be "handling" anything very well.

I'm going to end this entry with my thoughts on Timothy's diagnosis.  He is NOT autistic.  He is more than just autism.  Timothy HAS autism.  That is not all he is.  He is so much more!