Thursday, March 31, 2011

An emotional end to an intense year

Today was D's last ABA therapy session at his Autism Centre. In Canada, funding for ABA Intensive courses finish at the age of 6. After this we, as parents, only get about a quarter/third of the allocated funding to be used for therapy. The rest get's given to the school board. After that, we have NO idea how it spent or where the money goes. (To be fair, D has a full-time aide dedicated to him, so we pretty much are on the winning side of an funding arguments here - A full-time SEA costs more than the funding he's allocated.).

D turned 6 in January and we used some of his over 6 funding to carry on the intensive program till the end of spring break- Today.

So Today, we waved goodbye to everyone at his Autism centre and contemplated the last year as well as the future before us. Well I did. D is just ecstatic that these long trips and sessions are finally over. No matter how fun his Interventionist's are, they can't compete with PS3 games and play-dates.

D was only diagnosed in February last year, so he has only had one year of intensive ABA therapy (about 10 hours a week). The change in the last year has been amazing. His control over himself; his ability to articulate his difficulties has grown so much that even his day-to-day Interventionists are astounded. He is calmer, more able to cope. It validates everything that ABA pertains to accomplish.

So when we left today, I had very mixed feelings on today and what the future holds.

I am sad. I have made so many great friends in the last year, it's sad for me to realise that I won't see them on a daily basis. You only truly understand what it's like to have an Autistic child WHEN you have an Autistic child. Even when they are on the mild end of the spectrum like D, it's draining to have to consider the minutest detail of his/her environment every minute of the day. It's like constantly walking on egg-shells. Simple things trigger these children off, and you are so mindful NOT to make this happen, you finish the day exhausted. Yet, when an explosion happens you are conscious of all the looks and stares other people give you. No matter how thick-skinned you are, little bits of their criticism wipe off on you. You just want to scream at them... "He's Autistic, you do any better!", but instead you grin and suffer their negative energy. The fellow parent's I met at D's Autism Centre understood this. These people got me; I spent half my week with these people and I am going to miss that support so much.

However, I am also relieved. I spent 4 afternoons a week at this centre. Thirty minutes driving there, then ten hours over 4 days waiting - usually in a waiting room, and then thirty minutes driving home. This was a job, a full-on job. Forget anything else being done. The housework wasn't done. Paperwork wasn't done. Errands weren't done. Only the basics for keeping the house together were guaranteed. If I managed anything else you were bloody lucky. Thinking about all this time I am going to have - WOW. The weather is getting warmer now; I can see trips to the park, play-dates, half-an-hour to wipe the floor as D plays outside. I am relishing the freedom of not being tied to this centre. I am looking forward to the fun stuff I have missed out with D in the last year.

Despite this, my main feeling was worry. Worry over how both D and I were going to cope over the next few months. D has only been in therapy for a year and I wonder if it's enough. Is it enough time for him to have learnt and practised everything he needs to have a vaguely functional life in school? I am not so sure. I am really worried he is going to back-slide and his behaviours are going to increase and get more intense because he isn't getting the constant prompts and teaching. If that happens I have NO idea what we are going to do. We can't afford to pay for the intensive program out of our own pockets. He isn't going to get this therapy in school, so if things go backwards, I have no idea. It's not to say we aren't being pro-active about this situation. I am hoping to take an ABA course in May, which I hope may mean I can implement some form of ABA program at home (with some guidance from an experienced consultant). If I can keep the situation going, I can re-train as an Interventionist myself and then do all of his programs at home. If this works then great. If it doesn't, well I have no idea... if I can't do it at home.. well let's not think on that.

My other concern is my sanity. As mentioned before - dealing with a kid with ASD is exhausting and I am only really understanding how important those few hours a week -where I could reset myself mentally- were. What's going to happen without them? I don't know. Initially it won't be a problem. D is still in morning school, so I will get 10-12 hours a week peace when he is in school (excepting the school meetings and other paperwork I need to do). However, when summer recess hits. I don't know. I remember how frayed I was when I had to deal with D full-time and NO help before. I was on medication and on the edge of being a basket-case. I DON'T want to go down that route again and I am so scared I am going to. I am just hoping that I am more aware of D, myself and our own issues, that that won't happen again.

So there are lots of mixed emotions today. As you can tell from the post, not much frivolity or fun, but very thoughtful. I suppose I just needed to get everything written down and clear my head from all the thoughts rattling around that empty void in my head. How else am I going to enjoy the next glass of wine and some episodes of good natured kick-arse fun from a over-the-top spy drama (where all the spies are fantastically cute) if this crap is hanging around?


  1. Katie

    Be strong.


  2. We are kind of sick of driving the 30 minutes to take Jupie to therapy 5 days a week too. Its worth it and we do have fun in Altoona but it is work and we sacrifice so much.
    I don't think that the people offering up funding for autism therapy really get how it effects every single second of every day.

    I have three friends that although I don't see them much they are dear to me. I have laughed and cried with them as we waited for our kiddos in therapy. Now we don't go anymore but we are friends of facebook and we get each other. The small things are celebrated and the rough days are felt by us all.
    Hugs to you. I know what you mean. We get funding here but we had to jump through some hoops to get it since Jupiter turned 9 this year and the cutoff is 8.....not sure what the future will bring.
    Spring is coming and it helps for sure.
    You will do great and it is fun to learn about ABA. We did that for a while and it was very satisfying.

  3. Hi
    Just came across the blog - good to see I'm not the only barefoot running parent with an ASD child out there (proving there is nothing unique under the sun, or that if I am mad then at least I'm not alone).
    Keep up the great writing.

  4. Check out AngieBee...(The link is at the side). Barefoot runners with Autistic kids aren't as rare as you may think ;)