Overwhelmed is an understatement

So, it’s been a while – over a month in fact. Between working full-time, doing my MBA part-time and figuring out all the options for therapy for our Monkey over the last 6 weeks things have been nuts! So, where are we at? We heard back from the regional provider that Monkey was deemed eligible for IBI funding, which was a relief. But, it also meant that we are on a wait list. A list that can take over two years (maybe longer) before her name comes up. In addition to this, there are all sorts of changes going on in Ontario with the launch of the Ontario Autism Program¬†and nobody knows what is going to happen – even though the program is due to launch in June of this year. Yes – that is three months away. It is very disconcerting to say the least because, as with everything else about ASD it leaves us with more questions.

Some good news though – we applied for the Disability Tax credit through the Canadian government and got approved, which allowed us to receive the credit retroactive to Monkey’s Birth. In addition to this, we also received increased funding for the Child tax benefit, also retroactive to her birth. This leaves us with about $10,000 to get therapy started. This is a relief, but since we want to start her in as many hours as possible, with 15 hours a week, this means that this money will last for approximately 4 months. So, we are still moving forward with using some the of equity in our home to pay for therapy. Likely, or tax refunds will help ease the burden as well for at least a little while.

I find myself feeling guilty over money right now. We had booked a family trip to Great Wolf Lodge months ago before Monkey’s diagnosis, and if I am going to be honest it seemed frivolous to spend that money. I am finding myself equating amounts of money to hours of therapy. We are not extravagant people by any means, but even ordering take-out for our family (which might be equivalent to $50), I find myself saying – “that could pay for an hour of therapy.” I am trying to not be so hard on myself – and we generally manage our finances fairly well – but this guilt is overwhelming. In addition to this, since last July I have lost 40 lbs (done in a healthy way!) and i need new clothes (pants falling off you is not exactly professional in the workplace). I allowed myself to buy a belt because I figured it would at least keep pants up, even if I look a little frumpy. I know I need to allow these things – and with everything else if I am too tired to cook, it is alright to order out – we are doing everything we can.

We have found a wonderful therapy centre that Monkey started at this week. They will be coming to her daycare for 2.5 hours 4 days a week and she will do 4 hours in the centre on Saturdays. Once the summer hits, she will move to two full days at the centre and three days a week at her daycare. I am looking forward to seeing results from her therapy. Our daycare has been wonderful and accommodating and the centre director and staff have been wonderful as well. I feel very happy and relieved with our decision and the fact that we aren’t in limbo waiting for something to happen.

Through all of this – the thing that is getting me through is a smiling exciting face who screams “Mommmyyyyyyyy!!!!” when she sees me. I have to stop myself sometimes for impromptu dance parties or tickles because they fuel me to move forward more than anything. I will hold this little hand and guide her as best I can – but in reality I know she will guide me where she wants to go, and I will always follow her lead.

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Assessment and Next Steps

 

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Well, monkey had her assessment with the psychologist last week. I was looking forward to her going through it as well as dreading it at the same time. This is it. This will tell us where Monkey falls on the spectrum as well as what she needs to help her meet her individual needs and thrive. There were highs and lows with the testing, and we actually saw a couple of behaviours we haven’t seen before, so that was interesting to see.

Day 1 – The first test was the Bayley III screening test which is designed to measure the cognitive and motor development and test behaviour of toddlers up to 42 months of age. This involved a bunch of short game-like tasks involving puzzles, dolls, identifying photos, and eventually gross and fine motor skills. One thing that Monkey did was pick up a plastic teddy bear, hug it and say “my baby”. She has likely seen this somewhere, but it was the first time I have seen anything like that as she has been disinterested in stuffed animals, dolls, or any other pretend play that involved taking care of a “baby”. I admit I was shocked when it happened, and it warmed my heart a little. We could clearly see where she had difficulties with certain tasks and in particular receptive language. This test was almost two hours long, and she would not sit still (she never sits still) – so we were literally bribing her with Goldfish crackers in order to get her to sit and stay focused on a task.

Day 2 – This involved a LONG parent questionnaire about all of Monkey’s behaviours and histories. Luckily, my mother was watching Monkey so we could do this in peace and without interruptions, because it would have been so much more difficult if we hadn’t. My hubby and I were pretty much on the same page for most things and our psychologist was amazing at explaining the question if we didn’t understand.

Day 3 – This was the day of ADOS. This was only about an hour in length, and less structured than the Bayley test, and it seemed to suit Monkey a little better. Since it was mostly observational, and had some toys and activities that Monkey liked – it was not too stressful (with the exception of group singing, which we already know is one of her sensory triggers).

After the tests had been completed, but not scored, we asked our psychologist her thoughts on where she thought Monkey might be on the spectrum. Obviously, she could not give us an exact area per say, but said she was advanced in some areas, and moderate to severe in other behaviours. However, the main thing was that there was no doubt that she was on the spectrum. We were prepared to hear that information – but now I have more questions and worries than before knowing that it has been diagnosed.

Next steps: we are meeting with a Family support coordinator next week from our local Autism community chapter to figure out where we go from here. The one thing that strikes me about ASD diagnosis is that there is no manual. Nobody tells you what to do – it is up to you to navigate the system, sort through the crazy amounts of information, and try things to see what sticks. This will be a long journey with a winding path, but having someone at least give us some direction will help. Off we go – I better pack extra goldfish crackers.