Humble Pie

One of the hardest things about being a special needs parent is feeling inadequate.

I've said it before and I'll say it again. Having a special needs kiddo, did not somehow magically grant me more patience, coping skills or inherent knowledge. I had to work hard to catch up and understand what the doctors were telling me.
I made mistakes, but I learned and am still learning.

One of the mistakes I made was trying to go it alone. I tried to do everything myself.  I shouldn't have.

I feel like I'm making that mistake again.

They are currently overhauling Autism Services in Ontario in a major way.
Everyone is talking about it on my FB support groups.

I was sent a link for a 130 page government program brief, but I won't pretend I've read it all or understand it.

What I need is for someone smarter than me to look at this program and tell me how it affects Tiger specifically. Reading through bits and pieces and examples of fictitious children is not helping me.

One group is shouting YAY reduced wait times
Another group is shouting NO you are writing our children off at 5 yrs old.

An eight thousand dollar payout to those over the age limit, who are still waiting for IBI seems like a slap in the face to me. I don't want to freak anyone out here but I spent 10 grand in the first couple months of Tigers treatment.  My hubby says we are over 100k spent on plan Tiger at this point and, she's only just turned six,  We estimate we will spend another 160k by the time she is 18 yrs old provided she doesn't experience another regression.  I mean we sold our house and someone thinks 8 thousand is adequate for a child who needs Intensive Behavioural Intervention. I must be misinterpreting this. Tiger is only moderately severe, she doesn't even qualify for IBI anymore. What does that mean, will there be no services available if she does regress?

So I'm going to have to eat some humble pie, admit I don't understand the plan as it pertains to my girl and go ask someone to break it down for me. It's too important to ignore.


The High Functioning Life, where sometimes, you just have to smile and swallow.

HFL Mama



Update!

So I've read some more, and asked some more questions and it's really sad news.
Our government, has in fact decided to try to write off all the kids waiting for IBI, who are over five with a payment of 8 thousand.  I had really hoped, that I was misinterpreting what I was reading.

 So instead of receiving as much therapy as they need, these kids will only get as much therapy as their parents can pay for, and what do you think will happen to the price of  therapy when the demand suddenly increases?  Talk about a creating a class system in health care.  The argument is that the most benefit is reaped by younger children, and that the effectiveness of therapy decreases with age. Even if that's true, so what ? If a 10 yr old could derive any benefit form IBI should they be denied? A 12 year old whose suffered a regression should be denied therapy?

Let me put it another way,

If a child was waiting for sign language training, would a cut off age be acceptable?

What if they were waiting for specialty equipment like prosthetics or implants, would an age cut off  be ok then?


The lack of funding and resources for therapy that resulted in these huge wait times is not our kids fault. How can any decent human being vote for denying therapy to disabled children?

Sign the petitions, write the letters, call or email your MP's office.

Autism doesn't end at 5.