Friday, June 21, 2013

My post on Autism




Just a quick pop in to say a sincere thank you to all those who have contacted us and left comments of hope and encouragement on my last post.
We are so grateful to hear from people in same situations that we are in and I am glad I could reach out and share our story of hope and determination.

I have been without wifi internet for the past 4 days and now we are still without it and I am now  plugged in.  But just for a bit while the fix the issue.

Life has changed so much in just a few short days of my post.  The new school we had such high hopes for left my child neglected and only thru me being a nervous mom and standing like a stalker outside of the school and watched him from the parking lot as they played out on school grounds did I find how they really treat autistic children.  Shocking to see and to leave our trust with people who say they are all for helping and once again it is all about the damn dollar signs.  Again we will start over in a search for help with our boy.  It is costing us an arm and a leg to keep up on registration fees, evaluation visits from doctors and therapists because insurance doesn't want to label autism as a "real" medical issue.  Everything is at cost out of pocket. 
Due to this I am letting all of my vintage pieces and collections go.  I will be cataloging and listing as we get our internet back up and going. 
I can't believe how this disease of Autism is raging and 1 in 50 boys is now determined to be on the spectrum.  And yet the disease is thrown aside by doctors, schools, insurance and our government as non issue in America.  This to me is discrimination.  We know as a society it is taking control of our children yet no help is being offered at a reasonable rate.  Every doctor and therapist we see is CASH ONLY!!!!  What the hell???  People if you are looking for a subject in college to study, get in on the psych, speech and neuro fields,  you will make a fortune and its all cash. URRRRRRGH!
Most starting at $300 an hour for a minimum of 3 hours.  Ya, you do the math.  This is weekly and monthly visits.
Sorry for the rant but I think people need to know what is really going on with the help for our kids.
We aren't all famous moms with endless amounts of cash to help our children.  While I cry for those moms and their stories too, it just isn't feasible for us real world moms to have the same care.
Things need to change!
How bad does it have to get?  Will all the boys soon be born with this disease?  1 in 50 and just 2 years ago it was 1 in 108 then 1 in 88.  It has to stop. 

Monday I hope to start listing my collections here and on etsy.  Thank you for all your support and kind words and I will be emailing personal thank yous as soon as my computers are back up and running.


4 comments:

Ricki Jill Treleaven said...

Oh, no! Well I can't tell you how many people I know here with children on the spectrum who homeschool. And the main reason is that there's no place at the table for parents of special needs kids....they are left out of the loop when it comes time to make policy. And then there's no accountability at the state level for school districts. In our state the few parents (with school age children) on the state board of education have their children placed in private schools.

And the President of our nation obviously doesn't put much trust in the public education system because his precious daughters are in private school.

I really don't know what to say other than I feel your pain. We're tired of the retribution, incompetence, and discrimination in the public school system. The system is broken, anyway....after all, the number one function of a public school these days is crowd control.

xo,
RJ

Gail Thayer said...

Amy,
I'm so sorry you're family is going through this...aren't there programs where you can get help and Brooklyn can get an IEP for school...or maybe he's too young yet.
Schools HAVE to make accomodations for children with autism or the myriad other special needs out there.
If the schools in your area aren't complying I would complain all the way up to your state senator if need be!
You're strong so I know you'll make it happen, one way or another....prayers to you and I do hope you're able to find a great fit for sweet Brooklyn.

Laurie said...

I am so very sorry for your struggle , this frightens me, our three year old grand daughter has just been diagnosed as Autistic,

Rhonda said...

You have had your share of life struggles, Amy. You amaze me in your strength and clarity. Reaching others with your message means the world to those out there who are in your shoes. My prayer is that someone sees your post and contacts you with answers that are much needed right now. I'm here and willing to lend a hand in anyway I can. xo