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?