Often K will wake up and declare "Tina is gonna come", she is one of his therapists. It doesn't necessarily mean she is going to come, but it is his way of asking me who is coming today or confirming, because he cannot ask a question. He never says What, Why, Where, When or How. He also has trouble getting a questioning tone right. He makes a statement and waits to be corrected or reinforced with a reply. It works for him, for now and maybe one day he will start to ask questions the way people typically ask them.
This morning he declared and I corrected him so he knows who to expect. However, very soon there will come a time when no one will come. This is when our funding from the regional provider will end and we will be exited from the DFO program for Intensive Behavioral Intervention or IBI.
Legally a regional provider cannot exit you from a program without the go ahead from the psychologist who supervises the program. When we initially received news that our turn to receive government assistance to provide ABA therapy to our son had finally arrived after a two year wait, we tried to get a psychologist. However our choice was rejected for no reason other than the person in charge has been given absolute autonomy over who to reject and who to accept. When we tried to argue, we were threatened and bullied in to apologising.
Because I know the realities and my own limited resources, I gave in and accepted someone from their recommended "list" of approved psychologists. He has been a blessing in that he is honest about the politics of this exchange. In honesty he gave us an estimate of when we could expect to get exited, if not earlier than that. This has nothing to do with the child's learning, progress or lack thereof. This is the game and this is how it is played.
When the money started coming in, you see the numbers and feel a relief that finally some help is coming your way. For the two years I was waiting, I constantly reminded myself of how when the help comes it is going to be very very temporary and that I should have no hopes attached to it.
In the 6 months that have passed since this relief, I have tried very hard not to become comfortable with the idea of government funding to prepare myself for when it will inevitably end. But it is hard to stay in that frame of mind.
There is no surprise that almost every parent in Ontario with a kid on the spectrum will at some point send put them in school. Regardless of the fact that the "teaching" they receive in school does not do them any justice and after a decade of baby sitting, your adult child will be returned to you with even fewer options for his future.
It is deplorable and shouldn't be like that, but this is the reality for families in Ontario.
My five year old autistic son of course is oblivious to all this.
He doesn't know that the people who come in here every day are paid. He doesn't know about funding, or hours or benchmarks or politics. His therapists are the only people in his life, besides his mom, dad and baby sister, who mean anything to him. Who know how to communicate with him, make him feel competent, and reinforce him.
In a few months his life will change from what he has known for the last three years and the people he has grown to value will move on because his parents cannot afford to keep them.
And there is nothing we can do about it. We cannot sustain his therapy on our own anymore after we are exited because all our means were exhausted while waiting two years for our turn to receive the funds from the government.
I have to plan for something for my son for when that happens. Who will
he see everyday? Who will talk to him and spend time with him besides
me? He has no friends, teachers, community helpers. There is no one.
This is my thought for 2012. Just a countdown to what next.