Parenting a child with autism is no walk in the park. If you’ve been following along with me for the past year or so, you will know that we are in the process of obtaining a diagnosis of ASD for our oldest daughter.
We have had countless disappointments and setbacks but still we held on because we were assured that by the 1 year referral anniversary we would have a date for assessment. We have now reached the one year mark only to be told that it could be another 8 months.
8 Months.
Why? Because of funding cutbacks and too many children are being diagnosed. It is highly probable that we won’t even get the diagnosis because of how high functioning our child is.
A diagnosis we probably won’t get because we refused to sit idly by and wait for help. We paid for the private school, psychological assessments and for the tutoring so she could learn to read. If she had stayed in the Public School System here in British Columbia, she still would be reading two grades behind.
All things that our child is entitled to under Canadian Law. All things she should have received assistance for. Not to be put on some “watch List”. Not be brushed off, “oh it’s not that bad” because the government wants to cut funding.
Yet, the more we help her the less chance we get help in funding.
And that’s what it all comes down to. Funding. We don’t want an ASD diagnosis. We don’t want to label our child. We do want help in learning how to interact with this child and how to help her achieve the best to her ability and increase the chances of her being able to be a functioning independent adult.
She shouldn’t have to see her family fall into severe financial straights.
She shouldn’t have to witness the stress that the financial burden is causing her parents.
She shouldn’t have to experience the parenting fails that occur because we don’t know what the hell we are doing and it seems like everything we say is wrong.
Not that I begrudge one single penny spent helping her but I do grieve for my other two children who get next to nothing. There are no extras for them. No soccer, no dance.
No family counseling (we are on a 6 month waiting list just for that) so that her siblings can understand why their sister is constantly lashing out at them, calling them names, threatening them and sometimes going so far as to actually hit them. Then be as sunny as a rainbow 10 minutes later.
We are about to get some money from the Government for back child disability credits that we are now entitled to. Unfortunately, because of the most recent 8 month delay, we are considering trying to go the private route and using some of that precious money to pay for it. Money we had hoped we could use to enroll the children in summer activities, like swimming lessons. Money we could use to pay for some therapies that we couldn’t afford and without funding aren’t eligible for.
I don’t know what I can do to help make a change. I’m not the type of person to contact my MLA or raise a ruckus. I’m a fill out the forms and wait for the call kind of person but we’re being told more and more and more that we have to get pushy.
We shouldn’t have to get pushy! We’re Canadians, we supposed to be infallibly easy going and polite!
Our Government needs to do something and it needs to do it fast. There are too many other children out there that are suffering and overlooked. We were able to scrape money together some from cutbacks in our own lifestyle and some from grandparents, so we could get our daughter some help. Not everyone is so lucky though, so many parents (especially single parents) out there don’t have supportive family to step into the gap or high enough paying jobs to make such options possible.
I want to hear from you. Whether you are living in the US or Canada, what do you think we could do to get the Government to take more action in assisting families with children of special needs?
Zeemaid
This is disheartening. We have some dear friends whose boy was just diagnosed and watching them walk through this last year of finding it out has been hard. Prayers and wishes for a better tommorrow!
ReplyDelete*hugs* This is so frustrating. I'm so sorry you have to deal with this. I have a friend who saw the signs in her very young son and has had to fight to get him seen and get help because he's so young.
ReplyDeleteIt's time to give them hell.