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Re: Welcome to the new Autism Spectrum Disorders f #198682
09/05/05 09:25 PM
09/05/05 09:25 PM
Joined: Jun 2005
Posts: 2,454
Los Angeles, CA
B
Bonniesa Offline OP
Koala
Bonniesa  Offline OP
Koala
B

Joined: Jun 2005
Posts: 2,454
Los Angeles, CA
When I was going through divorce with their father - who is paranoid schizophrenic and never been alone with them or lived with them - well until Nicholas was 7 months old and that does not really count! Anyway he had a lawyer so I considered leaving the country, just because a few times his lawyer scared me and since I did not have one was not sure what the outcome would be.

In the end the 25 page custody evaluation said he could not be alone with the kids and must follow several rules before even starting the supervised visitation, and we have not seen him in a few years.

The boys both get money through Social Security off their father's record, not for his mental illness but from some job accident that caused some back damage.

They both get their own SSI and I do things online to make some spare money, and then two months later it gets taken away from their checks.

One has an overpayment from when I started being the home health care provider and they count that as income, but the one I do it for SSI does not count it, but last month they sent me a 33 page document and now they are counting it. SSI made a $290 mistake that finally got fixed, but there is an $85 discrepancy so he was short that amount.

I have to report now the $80 I got from jury duty. The safest thing to do is sell stuff on ebay and use paypal.

The only thing that saves us is the income tax refund and the EIC. You probably also do the Child tax credit and the additional child credit, since they both get assistance.

I did not do taxes for several years and probably could have done the EIC, but the first year I got the IHSS and did the taxes I waited until April 15th because I thought I would owe money and then found out I was getting four grand and went nuts waiting for the money. I bought the minivan on ebay with that and last year we went on our first vacation through amtrak and blew it on that and a few shopping sprees.

This year we will go back to San Diego but the rest is being saved. Two years ago you had one month to spend the IRS refund otherwise SSI would count it, last year they said you had like 6 months, so I am going to make it last.

In April the house was robbed and I still need to replace the video camera, digital camera and printer/scanner and portable dvd player.

I now pay extra money for rental and earthquake insurance, had a $49 rent increase at the same time and now $85 less in SSI check.

I keep checking craigslist and think maybe I could rent out a couch to someone looking to live in LA - but I could not risk that with my kids.

I have a bagful of books to sell next week on ebay, once kids go to school tomorrow I can than stand in line at post office and send them out, if they sell!


Bonnie Sayers - Autism Editor

AUTISM site
Re: Welcome to the new Autism Spectrum Disorders f #198683
09/06/05 02:45 AM
09/06/05 02:45 AM
Joined: Aug 2005
Posts: 35
Comox, BC, Canada
J
JessieBoo Offline
Newbie
JessieBoo  Offline
Newbie
J

Joined: Aug 2005
Posts: 35
Comox, BC, Canada
I have just read your post about not having any services for your kids. I live in Canada and through the provincial govt. I get $1667.00 per month for services for my son, he is almost 4, a total of $20,000.00 per year. However when they turn 6 the funding goes down to $6,000.00 per year. It sounds like alot but you can only spend it on "approved" items. Shawns therapies cost an average of $1400.00 per month but that 5 days a week, 3 hours a day, the Speech Therapy and Occupational Therapy is covered by the province. You are also allowed to spend 20% of your yearly allowance on travel, training and equipment. I was allowed to buy my son a home computer for $1200.00 because his OT wrote me a letter stating it was needed for his development. Which is not to bad. The funding here includes PDD-NOS, which from what I remember is your sons disability?? I have read on this forum how little there is in the States for children with ASD. It upsets me, its not fair. My son starts preschool this week and all the fees are covered, any therapy I feel would benefit him, is covered, within reason I assume. I am not sure how the other provinces are with their funding, just thought I would let you know since I read you were even thinking of moving to Canada for services, maybe you were being sarcastic, LOL. British Columbia is nice, not too fond of other provinces though, LOL, too dirty!!
I have a book in front of me with all the funding info. Let me know if you want to hear more.I also am the high-class poor, so I know what you're going through somewhat. I have the services here but wonder how I am going to afford the gas to get him there.
Jessie

Re: Welcome to the new Autism Spectrum Disorders f #198684
09/06/05 03:26 AM
09/06/05 03:26 AM
Joined: Jun 2005
Posts: 435
Flowery Branch, Georgia
musicalmom Offline
Gecko
musicalmom  Offline
Gecko

Joined: Jun 2005
Posts: 435
Flowery Branch, Georgia
I never even knew there were programs to help. I've been VERY lucky that my husband makes a good enough salary, and that my ex-husband is an honest man to pay child support, that I have been able to stay home with my kids. That and the fact that Michael was SO high end, and without any other medical problems.

You ladies amaze me. Y'all have joked about writing in to Dr. Phil, I say do it! Send him a list of all these posts. if he were to see what all you have done, gone through, put up with, and still accomplished; he would be amazed! Who knows? He might could put you in touch with the right people, or maybe light a fire under some butts with his national televised pull (especially with elections coming up in just a couple of years - y'all know how early campaigning starts!)

Bonnie - lets go for it. Point me in the right direction - and we'll all do it. (Heck , maybe we could at least get some of y'all a babysitter and a makeover.) <img src="/images/graemlins/wink.gif" alt="" />


Michelle Taylor
Why me? What did I do to deserve this?
(go on, ask)
Re: Welcome to the new Autism Spectrum Disorders f #198685
09/08/05 03:10 PM
09/08/05 03:10 PM
Joined: Sep 2005
Posts: 24
CALI
H
Handy Andy Offline
Newbie
Handy Andy  Offline
Newbie
H

Joined: Sep 2005
Posts: 24
CALI
Thanks, I need a makeover & I can talk the pants off (poor choice of words) Dr. Phil..ha ha ha..maybe we can get on extreme makeover, so we can look good at the social security office????

Re: Welcome to the new Autism Spectrum Disorders f #198686
09/08/05 10:45 PM
09/08/05 10:45 PM
Joined: Jun 2005
Posts: 435
Flowery Branch, Georgia
musicalmom Offline
Gecko
musicalmom  Offline
Gecko

Joined: Jun 2005
Posts: 435
Flowery Branch, Georgia
I'm holding out for Extreme Makeover until I lose all my weight. So then I can have the MAJOR plastic surgery done.

Baby, I want them to fix EVERYTHING! And since I have over 100 lbs to lose, i'm more than likely going to need a panniculectomy and I KNOW I want someone to snip off these turkey arms, and I just want my breast back where they began! (I always think of that song from "Lil' Abner - Put 'em Back, The Way They Was") Lets throw in a nose job and then let that guy that does the work outs try to kill me - and I'll be in good shape!


Michelle Taylor
Why me? What did I do to deserve this?
(go on, ask)
Re: Welcome to the new Autism Spectrum Disorders f #198687
09/09/05 04:12 PM
09/09/05 04:12 PM
Joined: Jul 2005
Posts: 27
A
anifsj Offline
Newbie
anifsj  Offline
Newbie
A

Joined: Jul 2005
Posts: 27
Ladies....I need to vent....
My son isn't sleeping! I don't know what to do. This is my second week on 2 or 3 hours of sleep per night. I don't know what is wrong; I can't pinpoint why he's not sleeping. The truth is, I'm suffering. I work full time, and I'm making mistakes, being unfocused, and worst of all, I can't get rid of this feeling of wanting to cry every minute. I know it's because I haven't slept. It's 10 a.m right now, I'm at work, and I've been awake since 2:15 a.m. By the way, I wrote to Oprah a few days ago...if her producers are interested in a show about parenting an autistic child, I'll let you all know.
Angie

Re: Welcome to the new Autism Spectrum Disorders f #198688
09/09/05 10:41 PM
09/09/05 10:41 PM
Joined: Jun 2005
Posts: 2,454
Los Angeles, CA
B
Bonniesa Offline OP
Koala
Bonniesa  Offline OP
Koala
B

Joined: Jun 2005
Posts: 2,454
Los Angeles, CA
I can search for your other posts, but to keep the data in one place - could you mention the age of your son and if he is on any medication.

I would suggest going to Trader Joe's or a similar type place and getting some chewable melatonin. Give the pill to him to chew about an hour before his bedtime.

I wrote a review on the site under health and wellness products on a chewable melatonin I bought online at Kirkman Labs - that would be a site to order from if you cannot find anything over the weekend.

Melatonin does not interfere with medications, Matthew took it a few times while on Geodon since I gave one to his brother and then he stopped after about a week. They taste like peppermint.

http://www.bellaonline.com/articles/art33281.asp


Bonnie Sayers - Autism Editor

AUTISM site
Re: Welcome to the new Autism Spectrum Disorders f #198689
09/10/05 01:03 AM
09/10/05 01:03 AM
Joined: Jun 2005
Posts: 2,454
Los Angeles, CA
B
Bonniesa Offline OP
Koala
Bonniesa  Offline OP
Koala
B

Joined: Jun 2005
Posts: 2,454
Los Angeles, CA
I don't care for Dr. Phil and from what I saw on his primetime special awhile back I would not want him to talk about autism. He is clueless on a lot of things and I put him in the same category as Dr. Laura.

Oprah is not interested in the autism community, there has been large campaigns to write into her show and get the focus on autism and nothing materialized.

I also would not want her involved. I think instead of people placing such importance on Oprah they need to recognize those that have showcased Autism and send them thank yous:

Jane Pauley
Montel Williams
Good Morning America
CNN - Paula Zhan
MSNBC/CNBC and NBC
Lifetime TV
ER
Scrubs
The Closer
CSI
7th Heaven
Without A Trace
Extreme Home Makeover

We should be contacting new hit shows and trying to get them to have a story on autism - like the Hospital show with Patrick Dempsey on ABC Sunday nights that airs after Desperate Housewives - I just checked my tv guide and was not on this week and the name is not registering at the moment.

I think the Extreme Home Makeover shows last season - I believe there were three families that had autistic kids - they showed what autism is like on a day to day basis.

Each person can send letters to their newspapers, set a google alert on the topic of autism and see all the stories that are published daily across the country.

My ten year old wants me to call Super Nanny and have her stop his brother from screaming. I also like the Nanny 911 that is on Fox. I have Super Nanny book checked out from library and might just contact them, but would like to have my house look a little better just in case.

I think the focus needs to be realistic, not Dr.Phil or Oprah but those that have shown an interest in autism. Ellen seems more flexible, I heard Tony Danza is coming to Los Angeles next week (meaning he will be airing on here) I think the show is in NY.

In the coming months is the time to approach people to start working on stories for April - autism awareness month. Dr Phil and Oprah are working on the Hurricane Katrina disaster.

Contact magazines to write and share a story. Woman's world always has stories and in the Aug 31st issue was one on a savant kid with music talents. I have read many in that magazine over the years.

Make a video tape of your child and send it to a show or newspaper or magazine that accepts this type of data. Try health magazines for stories for April, Mothering ones and parent ones always have stories.

Also remember to write stories to submit for the Cup of Comfort - http://www.bellaonline.com/articles/art34805.asp


Bonnie Sayers - Autism Editor

AUTISM site
Re: Welcome to the new Autism Spectrum Disorders f #198690
09/10/05 01:57 AM
09/10/05 01:57 AM
Joined: Jun 2005
Posts: 435
Flowery Branch, Georgia
musicalmom Offline
Gecko
musicalmom  Offline
Gecko

Joined: Jun 2005
Posts: 435
Flowery Branch, Georgia
Sorry Bonnie, I really wasn't trying to make light of the situation, just trying to help. I have never seen Dr. Phil handle autism on his show before, but I have been impressed with his handling of family issues period. And he does seem to have a way of getting things out in the open!

My goal was to get these ladies noticed in a big way, so they could not be shunted aside by the red-tape beurocracy that seems to be happening to them so much. And also to shed some light on these desk-riding idiots that don't care about anything other than their own paycheck and 401K plan!

I'm tired of watching our brilliant, talented children be shoved aside, with no chance to discover where their talents may really lie, because no-one has the time for them. What if one of these kids has the cure for AIDS stuck somewhere in that socially sealed off brain? What are we missing out on because the government thinks they are a waste of time?

I make jokes to cover up how [censored] off I am, because I feel so helpless, because I'm one woman, of no importance, who has probably missed her chance. Well maybe these Moms haven't missed their's, so I'll risk being the butt of the joke if it might get them the attention and the support they deserve.

They at least deserve a babysitter for one night!


Michelle Taylor
Why me? What did I do to deserve this?
(go on, ask)
Re: Welcome to the new Autism Spectrum Disorders f #198691
09/11/05 08:36 PM
09/11/05 08:36 PM
Joined: Sep 2005
Posts: 24
CALI
H
Handy Andy Offline
Newbie
Handy Andy  Offline
Newbie
H

Joined: Sep 2005
Posts: 24
CALI
I appreciate any support I can get, believe me! It SUCKS that there is no forum to vent on TV about autism & parenting an autistic child, or familes who have multiples. I am surprised OPRAH hasn't done a story on it yet! I pretty much have accepted our lot in life, although my kids are older 15 & 20. What pisses me off is how the OMR/DD is trying to pass autistic kids off onto Mental Hygiene for services, then Mental Hygeine says "no"...well, where the hell is my kids supposed to get services?
I know I am complaining, but even my mother is no help! just nags & criticizes..I know Bonnie has in her intro that she has no room for negativity & cut off contact from East Coast family...I am curious how other people have been treated by their families???

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