What kind of help could your #autism family use?


I was asked in a recent post,  what kinds of things would could a non-profit do to benefit my special needs family?  She was asking a really good question and so I thought I would pose the question to my readers as well. 

What could a non-profit autism organization do to help your family?

Please leave your feedback in the comments below. 

This site is managed via WordPress for Android, courtesy of the @SamsungMobileUS Galaxy Note 2 by @Tmobile. Please forgive any typos. I know how to spell but auto-correct hates me.  😉

For more ways to help the Lost and Tired family, please visit Help the Lost and Tired Family.


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JenniferWhynott

Educate our educators and schools on how the WHOLE spectrum works and how kids are different on the spectrum. I have been told by an “experienced” speech pathologist who has worked with spectrum kids for over 20 yrs  that my daughter does not have aspergers because she observed her twice on the playground and she was talking with other children. Yet my daughter has no friends, spent her entire Christmas break taking notes out of an encyclopedia about horses, and still has tantrums at 10. She also like to collect things like 47 build a bears, 102 littlest pet shops, and 30 or more plaster animals. Not only that but she has spent hours organizing them just to take a picture of them. They are her world and these toys are what she spends her time with not people. From the research I have done she more than fits the bill. I am so sick and tired of kids being passed over because of perceptions that our educators have about the spectrum.

lostandtired

@JenniferWhynott a-friggin-men. Very well said.

Michael Miller

Off the top of my head, a couple of things: perhaps (financial) assistance with things like speech/behavioral therapy or other health related issues.

lostandtired

@Michael Miller I agree. Therapies are extremely important and extremely expensive.

AlanaJulianaSheldahl

Health Care.  Comprehensive, unstinting health care:  Most of the diagnostic clinics in our town and the best psychiatrist and OT’s don’t take insurance.  We’ve got insurance, but even with it, we can’t afford OT for our son (who only really has a dx through the school and has only ever seen a psychiatrist for a few months a few years ago).  What he needs is an OT to help him with sensory issues, but that’s been out of reach for our special needs family.  For my oldest daughter, what I need is someone to help me navigate “the system” now that she’s 18 and on SSDI herself.  What is out there, what does she now qualify for, etc.  SO many questions.  I’m just dreaming here.  And a geneticist…our family could use one of those. With 3 out of our kids on the spectrum, Dad self-diagnosed as on the spectrum and mom w/ fibro and autoimmune crap.  at least one kid w/ autoimmune crap, too.  What is UPPPPPPPPPP??????   Needless to say, we limp along, paying our bills off over time and barely being able to afford just seeing a normal doctor for our health problems….

lostandtired

@AlanaJulianaSheldahl we’re in the same boat here. We’re lucky enough to have a children’s hospital near by that takes our insurance. We have 3 boys with autism, one of which is medically fragile. My wife is an aspie with tons of health issues as well.

rmagliozzi

My best friend has a son with autism who we are fairly certain also has PANDAS, and extreme behavior issues.. He really needs both medical and psychiatric help, but because of previous hospitalizations, the cost of getting him health insurance is outrageously high and she can’t afford it. She really needs free or way discount medical treatment, to start off. She’s a single mother and just can’t afford to insure him. It;s so sad.

lostandtired

@rmagliozzi that’s just wrong. Has she applied for medicaid? I would love to see some of the well to do autism organizations spending money on real people like this.

rmagliozzi

I believe so. KidsCare is the state health insurance out here in AZ, and they have a very long waiting list they are on. She’s done the application already.. She is also looking into SSDI for him.

lostandtired

@rmagliozzi Gavin is on SSI. That opens up many doors. I wish her the very best of luck and hope that it all works out.

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