Tuesday, December 2, 2008

Feeling the need to rant and maybe rave too!

I am really sick and tired hearing about all these wealthy people who have "CURED" their autistic child. I mean seriously, this is not a "curable" disability. Ok so they can afford full time Behavioral Assistants and Nanny's and Therapists and anything else they can buy to help their child. What about the rest of us who struggle every day to figure out how to work full time and get home before our special children get off the bus from school because we can't afford to have full time help. There are no afterschool programs for these special children within 50 miles and I live in a Central NJ, not exactly in the middle of no where.

So am I lucky to live in New Jersey? Here there are certain services that the state will provide to a special needs child here. Do you have any clue what you have to go through to get these services? Then there is the DDD, another agency who is suppose to help our special children, you not only have to fill out a book to start the process of intake but then you have to gather documentation from every doctor, school, test, person your child has every had contact with while at the same time proving they are a real person with birth certificates, passports and social security cards. Yes all this while trying to raise a special needs child alone, work full time and be there when the bus arrives from school with a smile on your face prepared to deal with a child who asks over and over again the same questions?

My Not Otherwise Specified child is enthralled with numbers, time, age, etc. He spends his day counting and trying to figure out how this number relates to that number. Most of the time he already knows the answer to his questions so why does he keep asking them over and over again? Why can't I be a "rich" person who can afford to have the full time help this child needs so he can also be "cured".

12 comments:

Live.Love.Eat said...

Hi. I came from SITS. Did you mean to link up to the Merry SITSmas celebration?

Pamela said...

You'll have to be the expert, advocate, specialist etc. It is a huge row to hoe, but be thankful for the internet.
Visiting here from the SITS X-mas party too.

Unknown said...

Merry SITSmas....I couldnt find your sitsmas post so i am wishin you a happy one here

Natalia said...

You've given me a new perspective...


Merry SiTSmas.

Valerie said...

I hope things get better. Came over to wish you a Merry SITSmas day.

Mikki Black said...

Merry SITSmas!

Hang in there. The NOS is a hard label to live with, especially as a single parent!

tara @ kidz said...

I LOVE LOVE LOVE this post! I think you should come over and check out my blog - it is specifically for children and parents as yourself. I post the story of a child at least once a week and I have recently interviewed parents with children who have autism. And they all have very similar rants and raves. It is so frustrating for you and I'm sorry! My daughter's syndrome is often misdiagnosed as autism as well, so I'm afraid my future will have some of your same rantings and ravings. I would love for you to share your son's story on my blog if you'd like. Email me or post a comment on the blog if you're interested.

OH and have a very Merry Christmas!

Much love

Vickie said...

I am from SITS, wishing you better days.

I hope you have a very merry SITSmas.

The Wife O Riley said...

Here from SITS just to wish you all the best.

Happy Holidays!

Julie said...

Wow...I totally identify with the "asking the same question over and over again" thing. My little guy does that EVERY DAY. ALL DAY. Yeah, I get frustrated, but he doesn't know any other way to make conversation.
And I hear ya about jumping through the hoops. It gets a little old at times. I wish I had a quarter for every DDD case worker we've had.
Well, anyway...merry SITSmas!

Anonymous said...

I know, I can't stand how Jennie McCarthy claims she 'cured' her son's autism.
I was a special education teacher and my hubby currently is one. All summer he taught a class of students with autism and he always remarked how so many people (even people working with the students) have no clue.

tara @ kidz said...

I came across this today. I think it is an excellent resource for parents of children with autism. I hope this helps in some small way!

http://aliedwards.typepad.com/_a_/autism_links.html

Much love!