Saturday, February 19, 2011

Somewhat thankful to be living in Illinois

Not because we had a blizzard 2 weeks ago and today was 48 and sunny and no more snow.

Not because our state is bankrupt.

Not because it takes weeks on end for service providers in the state of IL to get paid by the state.

Not because if I didn't have friends already in Early Intervention or if I didn't learn my way around EI the first time around I would be clueless about how to get shit done.

But I am thankful because it could be worse.

It could be Wisconsin where there is so much turmoil that politicians have come to OUR state to hide out.

Where there is a good chance that a bill would be signed into law that will cut services for kids like Avery. Services like Respite Care could be cut or eliminated. This is part of the big bill the Governor of Wisconsin wants to pass at lightening speed but it's tucked way down in there. You can learn more about it at Elvis Sightings.

Now why is respite care so important? It's important so family members who care for special needs children can get a break to do normal things like go to the store, go out to dinner with their spouse or go to therapy with their spouse. Families with special needs kids or autistic kids have a tremendous fear of who can take care of their child for just a few hours. Will they know what to do when an autistic kid has a meltdown and starts banging their head? From what I gather from the blogs of parents who have an autistic child that their state either offers respite care OR they do and it's a huge ass circle jerk to get it such as what Sarah experienced here: Intake Specialist.

I read that story today after I had an appointment with our local respite care representative to be put on the waiting list for help. Back in October my friend told me to try to get on the list after Avery's diagnosis but she said it's about a 2-3 YEAR waiting list. I procrastinated because I thought YEARS waiting list and who knows where we will be living etc. Just I did not jump on it.

Oh and respite care was NOT something that my Early Intervention case worker talked about. I had heard about it a long time ago from another friend who mentioned it for the friend who told me to sign up. So last week the above said friend called and said she got pulled for the list! She finally made it. Now it was only a couple of months and she had just called in October herself. Ok see where this big slap on the head with my palm is coming? Yeah DER. I should have done this back in October. Now instead of years it's only a few months to get respite care. Which for us would be 15 hours of childcare during the month for both kids. Which means I could oh I don't know actually get a hair cut and not worry that someone's diaper wouldn't be changed when I got back. Or that someone can actually handle Avery and understand that yes she does have AUTISM and she is not just slow to talk. 

I know there are parents who have it worse than we do especially when it comes to the severity of what part of the spectrum their child is on. Some parents don't even know who to turn to for help and some parents have to deal with morons who in the end can't help their child. Which sucks big time.

I read the blogs of angry parents who have to deal with so much and that's when I consider myself lucky to be living in Illinois. It may take awhile, it may be more work but eventually she'll get the care that she deserves and we'll get the help that we need.

1 comment:

  1. I didn't realize that you live in too! Where are you? We didn't do my daughter's Early Intervention here so I don't have that experience, but I'm so glad that we moved back here from CA just as she was turning 3 because I'm loving our school district!