Harold Doherty over at the Facing Autism In New Brunswick blog posted a link to this very relevant article about the cost of autism to families.
Let me second him by sharing a little story of my own and in completely agreeing with this significant reality.
There are two scenarios that we face this week. This is life as usual in this house. We don't think about how stressful it is, or why we have to go through this, or what other people are doing. There is no time for that kind of self indulgence. There is only action, and an inevitable trudge forward through the crap that is thrown at you.
But let me stop for a minute today to share two things.
For two years following my son's diagnosis we funded our private therapy program out of our own pockets for 15 hours a week.
Then our number came on the waitlist and we were funded. There were a new set of requirements for running the program the way the government wants us to run it. This is standardized, despite any claims of individual programming. So we did what we were told. Except we had a hard time meeting their hours requirement of 25 hours a week, for the first few months.
Finding new people who suit your kid, your team and your program is hard. I don't want to pass the buck to a center and turn a blind eye to my son's only chance at getting the right treatments for his disorder. I want to give him the best of what's out there. It takes time to find the right people and train them. I am not picky, I am thorough and exhaustive.
A few months later we started getting less money, which apparently is a "claw back". I understand getting less funds as we were doing less hours. That is fine. But then we got notices telling us to increase hours. And we did finally manage to find the right person, and fill in the 25 hours a week. However we continue to get less money as the accounting books close for the quarter and we will have to pay for these extra hours ourselves because once the accounting books close for a pay period, adjustments cannot be made. So we were told.
I emptied out my bank account paying for K's therapy in the two years we did it ourselves. I officially closed my bank account as I had no funds in it, a few months ago.
We still pay for all the materials and any community activities ourselves. Funding only pays the therapists' salaries.We are a family of 5 that lives in a 3 bedroom apartment, with one room off limits to our personal use, because it is my son's therapy room. I used to have a job years ago, but I stay home to homeschool my son and continue working with him after therapists leave.
It is the law, it is the rule, you will be penalized for not obeying every requirement, it is for the protection of your child, is what we are told.
We are currently trying to convince the accountant at the regional provider, that we did not do anything wrong. That if we did not go over the funded hours, why are we having to pay out of our pockets? Just because we went under the requirement and did not lie about the hours on the invoices like other families??
I had decided when we got funded that I will never be the person who lies. I am a Muslim and any contract we make is sacred because Allah is the witness. Breach of contract is not permissible. Lieing and deception is forbidden.
A few months ago my son pulled a fire alarm in a building, where we were visiting some relatives. Like honest fools, we found the superintendent and told her that our kid had pulled it and it was not a real fire or a malicious action.
A few weeks later, my relatives (the tenants we were visiting) got a bill for $800 dollars. The by-law states that if this is done out of malicious intent then damages have to be paid to the fire department. We wrote letters to the fire department, city, property management explaining with proof of disability.
This week my relatives got a letter saying to show up to a hearing at a small claims court to settle the matter.
We cannot afford a lawyer, but there are legal aid clinics in Ontario that can provide you with one.
Someone had said to me earlier to just pay the fine and avoid the hassle. But we chose not to. (And not just because we would have to take out a loan to do so.)
I know we cannot change laws and might have to pay the fine anyway, but I want to do everything I can to stand up for my kid.
My husband has to lose work hours, shuttling back and forth to resolve this matter. Every hour he doesn't work, he doesn't get paid. My son continues to be autistic, oblivious, and that aspect of life and our personal struggles with him just continue.
I just do not want to be passive.
Allah says in the Quran 3:110
كُنتُمْ خَيْرَ أُمَّةٍ أُخْرِجَتْ لِلنَّاسِ
تَأْمُرُونَ بِالْمَعْرُوفِ وَتَنْهَوْنَ عَنِ الْمُنكَرِ وَتُؤْمِنُونَ
بِاللّهِ وَلَوْ آمَنَ أَهْلُ الْكِتَابِ لَكَانَ خَيْرًا لَّهُم مِّنْهُمُ
الْمُؤْمِنُونَ وَأَكْثَرُهُمُ الْفَاسِقُونَ
You are the best nation
produced [as an example] for mankind. You enjoin what is right
and forbid what is wrong and believe in Allah . If only the
People of the Scripture had believed, it would have been better
for them. Among them are believers, but most of them are
"For mankind" implies we have been commanded by God to stand up for the right and against the wrong when it comes to every one and every thing. Until we do that we do not become the best nation. Things in the divine scripture are not just written for fluff to read and feel good about, they are all commands to be followed.
I know now that arguing with the accountant at regional providers, and going to court for this hearing and just raising our kid without falling apart as a family, a human being, and as a Muslim, is our struggle for the sake of Allah. A struggle for which people like to use the term Jihad.
So make your own Jihad. Don't sit passively, rolling over and taking the crap from everyone.
If there is a protest against something wrong, show up. If there is some injustice being done, however small, deal with it. If it is hard to do something without bribing someone, don't do it. If by faking something you will save a few dollars, even if it is for a good cause, like treating your disabled child, don't do it.
There are better things that await the believer and I don't want to pass on those for a measly share of this pathetic life.