Celebrating Small Victories

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Monkey has been in therapy for almost 2 weeks now – and we are already starting to see improvement. We get daily reports from her Instructor Therapists and there are more and more successes every day! She can now sit in circle time with her peers, imitate actions and is even motivated to start table work which is great! It helps that Monkey is HIGHLY motivated by Goldfish crackers, so using those are a great reward for her. I remember initially reading about ABA/IBI therapy and getting a little turned off because at the beginning, it is a lot like rewarding a dog through training. But, I understand it now, and since it is something that motivates her, right now they will be used heavily, and she will be weaned off of them once she begins to make her way through the various ABLLS programs.

Monkey has always liked to stick her finger in our noses and say “nose” or in our ears and say “ear”, but when we asked her “Where is your nose/mouth/ear/head?” she would not respond with anything. She started the same thing yesterday, so I asked her “Where is your nose?”, and she pointed to her nose! I then followed up with “Where is your mouth/ears/feet/hands?” and she pointed to all of them. I looked at J and we both had tears in our eyes…because she was interacting with us and answering questions  – which she has never done before. Of course, there is a long way to go, but I am going to celebrate this small victory!

This Saturday J and I will be going in for a bit of parent training ourselves so we can be as consistent as possible at home. Monkey is going to be off therapy for a week (due to March Break), so we want to ensure that we are following therapy guidelines as much as possible. I cannot wait to celebrate all of the other small victories!

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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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