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Welcome to the new Autism Spectrum Disorders forum

Posted By: Bonniesa

Welcome to the new Autism Spectrum Disorders forum - 06/26/05 10:08 PM

Hello, my name is Bonnie Sayers. I am the single parent to two boys on the autism spectrum. They are 15 months apart and at opposite ends of the spectrum.

Matthew turns 9 next week - he is nonverbal, takes medication, attends feeding therapy, has an aide at school.

Nicholas is 10, just finished third grade, gets inclusion support, loves to draw. His current interests are cats, volcanos, tornados and always animals.

I try to read as many books on the subject as I can. I also write reviews on epinions and amazon. Feel free to post about any subject of interest and I will get back to you quickly.

I look forward to getting to know everyone who stops by.
Posted By: musicalmom

Re: Welcome to the new Autism Spectrum Disorders forum - 06/29/05 02:25 AM

Hi Bonnie,

I've said this in a couple of other places, but I'll make it official here.... I have a 13 going on 14 year old son Michael, who deals with Asperger's Syndrome- or High Functioning Autism (I'm having to school myself not to say "suffers from") He is EXTREMELY intelligent, but has problems with his social and emotional skills and his impulse-control. We first started noticing problems at about 3, but tried to shrug them off as tantrums, when his Dad and I started having marriage problems things got a lot worse (he had a little sister by then, too). We took him to a counselor who diagnosed him with ADHD.

After the divorce, I moved with my kids, from Mississippi to Georgia where my family is. I found a counseolr and psychiatrist for Michael, she diagnosed him as ADHD/ODD/OCD/Depression and started him on a variety of medications including prozac. It was a nightmare!. Eventually we changed counselors, and through a series of seemingly random events (I personally like to thank God for His ever steering finger on our shoulders) we wound up with a counselor who was doing a research paper on Asperger's, and recognized it in Michael

She eventually went back into the education system, but by that time I had met my current husband, and one of his mother's best friend's son was a psychiatrist who specialized in pediatrics and autistic spectrum diseases. Michael started seeing Dr. Black when he was 9.

This past year he won the math award for the 7th grade. He took 2 silver medals on the kayak/canoe team, he was on the wrestling team, and although he didn't win a medal, he never lost his temper, got overly frustrated, or through a raging fit that would have hurt someone. That made me prouder than any medal. He now takes Adderall XR and Risperdal, and his psychiatrist thinks that once puberty finishes having its fun with him, he may be able to come off some of the medicines! <img src="/images/graemlins/grin.gif" alt="" />

Oh, a really neat book I read was The Speed of Dark by Elizabeth Moon, it is fiction, and normally she writes science fiction, but she has an autistic child, and she wrote a book from the perspective of an autistic adult. It was very interesting!
Posted By: englishbirdy

Re: Welcome to the new Autism Spectrum Disorders forum - 07/30/05 05:24 PM

Hi everyone,

I'm gaby, I'm mum to Ben, 7, who has autism, adhd and recently diagnosed with epilepsy.

I'm also founder of an organisation set up to provide services and support to families of ASD children.

We've just moved into premises where i hope to develop and run an autism resource centre.

I live in Lincolnshire, England. Are there any brits on the forum?

I would love to hear from anyone anywhere,

Best wishes


Gaby
Posted By: Bonniesa

Re: Welcome to the new Autism Spectrum Disorders forum - 07/30/05 05:53 PM

Hi Gaby:

Thanks for joining the forum. I believe there are some Brits that are hosts of other areas on the site and visitors from all over the world come to the forum.

Nice to have you here.
Posted By: englishbirdy

Re: Welcome to the new Autism Spectrum Disorders forum - 08/07/05 10:36 AM

Thanks for your support, Bonnie,

Best wishes

Gaby
Posted By: ElleC

Re: Welcome to the new Autism Spectrum Disorders f - 08/09/05 12:34 AM

Hello,
I just happened to stumble upon this site while I was looking online for a bowling league for my autistic son.

His name is Mitch and he is 7 years old, he has a dual diagnosis of High Functioning Autism (not aspergers though) and ADHD. We just recently started him on the GF/CF diet, with dramatic improvement in both language skills and behavior.

Guess I should tell you a little about me too. My name is Linda and I'm a married SAHM with 5 children. My husband and I have 3 sons-25, 13 and 7 and 2 daughters-27 and 10. We live in Orange County, California.

Anyway, I just thought I should pop in and say hi.
Posted By: Bonniesa

Re: Welcome to the new Autism Spectrum Disorders f - 08/09/05 03:48 AM

Thanks for joining Bella and posting here Linda. Glad to have another parent here. Since you are not too far from us in Los Angeles I am curious to know if you found an autistic bowling league for Mitch.

It just so happens that Matthew's class at the summer autism camp is going Bowling tomorrow. Nicholas's class went last week.

I had a bowling party this past March for Nick's 10th birthday - although we invited the entire class - 17 kids, not one showed up. There seems to be a communication gap with many of the parents not speaking English at this school. My son is the only kid who is not Latino in his class, actually all his years at this school he is the only one - about 3 kids in the whole school are Caucasian.

No one really understood what RSVP meant in the invitation and then many do not have cars. The teacher said had I provided transportation they all would have showed up.

Luckily we went two days later to Sea World so it was not too disappointing, and my son bowled two games and I was out $250.
Posted By: JessieBoo

Re: Welcome to the new Autism Spectrum Disorders f - 08/10/05 03:03 AM

HELP ME!!! I need to know how to keep my Autistic son from smearing [censored] all over his walls at bedtime. Has anyone had to deal with this?
Posted By: MyKidsAreMyLife

Re: Welcome to the new Autism Spectrum Disorders f - 08/26/05 07:56 PM

Hello Bonnie and everyone else to!!! My name is Dee and as you can see I am new. I stumbled on this site after reading headlines about the 5 yr. old who died while going through chelation. I was looking around before to familiarize myself with the forum and I happened to read one of Bonnie's posts about your son going to live with his dad and your feelings on it. I have a Beautiful, intelligent and all around amazing 12 year old daughter on the spectrum,(sry, love to brag on her lol) She has already been asking when she can go live with her dad in NY (i'm in NC) He and my daughter have a close bond as she is his only child, but he has never been much of a help or support when it came to her diagnosis and learning process. He also seems to still somewhat subscribe to the same theory of "theres nothing wrong with my child", I know that someday I may have to let her go for longer than summer visits and that scares the [email]sh@#[/email] out of me. I have truely been her biggest advocate and support system and I cannot imagine life without her as well as imagining someone else being able to protect and care for her as I have. I do hope that you will make it through this horrible time, and if there is ever anything I can help with please feel free to ask <img src="/images/graemlins/grin.gif" alt="" />
Posted By: musicalmom

Re: Welcome to the new Autism Spectrum Disorders f - 08/27/05 01:07 AM

Hi and welcome! I'm usually a litlle more chipper than this, but if you've read my new post on the chelation - yahoo thing, then you'll know why I'm not so "jokey".

I think you were talking to me and not Jessie, my son's 14 & just moved out to MS to live w/ his dad. I live in NE GA, so I'm not too far from you. As a matter of fact we go up to Bryson city for girl's camp every summer, and have a ladies retreat in Gatlinburg (both w/ our church). Anyway, thanks for the shoulder and the support. It sounds like we've got a good bit in common. Stick around for a while! <img src="/images/graemlins/rolling.gif" alt="" />
Posted By: MyKidsAreMyLife

Re: Welcome to the new Autism Spectrum Disorders f - 08/27/05 02:57 AM

Hello again, Yes you are right I was mistaken about who I was talking too, Sry <img src="/images/graemlins/frown.gif" alt="" /> So now that I have the right person I will say to you musicalmom, If there is anything I can do or just to be a shoulder to cry/vent on just type away. That goes for anyone else too :} We are all on different pages and yet the same, but our trials are unlike that of most, so I believe it is our gift to find that we are not alone in this journey, and that we have places and people like us to share, laugh, Cry, vent, and whatever comes over us at any time.
I do have a son who is not on the spectrum and so far seems (hmmm dont like this word but for lack of a better term) "Normal" And the trials of Raising two completely different children is um WoW. But both of them are so special in their own ways, just cant stop huggin on them lol.
But as I have noticed with alot of mothers like me, our whole families become outsiders, and that is just plain sad, sad for them not me. God gave Alyssa to Me and no one else and i've no doubt she was a gift. So to all the others out there who cant or wont handle our type of people sry but "I dont really want to be your friend either". They are the ones missing out, not me. Sry I have a tendancy of going on and on. Anytime go ahead and vent on me ive got strong shoulders <img src="/images/graemlins/smile.gif" alt="" />
Posted By: Bonniesa

Re: Welcome to the new Autism Spectrum Disorders f - 08/27/05 03:05 AM

Hi Dee and welcome to the forum. Thanks for joining and posting.

When I went through the divorce and supervised visitation data in court I was told I could not move out of State unless the father agreed.

Dee and Michelle - when you were divorced from the father did you both live in the same state or already in different states? Who did the moving, you or the ex?

I really don't see us leaving CA, but am interested in knowing the hoops you need to jump through in the court system to go. I would guess that since the fathers get unsupervised visits with the kids it might not have been an issue, but maybe so?

I have not heard from him in a few weeks - he calls and I have no clue where from since I cut the caller id service last year to save a few bucks.

We have not seen him in three years so we could just move and he would not know for months.
Posted By: MyKidsAreMyLife

Re: Welcome to the new Autism Spectrum Disorders f - 08/27/05 03:30 AM

Hi Bonnie,

Alyssa's Father and I split in 1994, I continued to live in NY until 2001. By then I had remarried and we were all on somewhat friendly terms For Alyssa's sake. Ours was a diff story though, My new husbands position was being laid off for an unknown amount of time (later found out it was 1 1/2 yrs til it was back) So in order to keep his job we did a job transfer to NC The money was too good to pass up. My ex was not happy but agreed as long as there were calls, and that in the summer she stays with him for 2 months each year. I got lucky, he could have gone to court to try to keep me there but he didnt. They do have a tight bond though so it still kills me to seperate them, but he wont move closer to her (hes not in a relationship and has no other children). So I just pray that she doesnt insist on living with him til shes wayyyyyy older. Im sry that wasnt much help though.

Id call the courts and see what you may be able to do if the need arises and if things do change. You may be able to file for different custody. Plus if he's not coming around that may be grounds to change the custody order. But I wouldnt just take off unless your sure that he cant or wont fight it, that could lead to more court and legal battles etc...
Posted By: musicalmom

Re: Welcome to the new Autism Spectrum Disorders f - 08/27/05 03:39 AM

We divorced because Kent was having an affair. i said I would file for "no-fault" and take the kids to GA with me, because that's where my family was from. He was too busy living it up with the woman he was sc*****, so he said OK. I would have slammed him hard in court had he fought me.

Lots of time has gone by, he's grown up, so have I, and I realized I contributed to the divorce just as much as him, just not at that immediate time, but that IS what got me out here to GA with my family.

The fact that your ex is so non-existent and has instability problems would probably go a long way in court, unfortunately it costs to go to court. <img src="/images/graemlins/frown.gif" alt="" />
Maybe you could check out advocacy groups.
Posted By: anifsj

Re: Welcome to the new Autism Spectrum Disorders f - 08/30/05 11:45 PM

Ladies,
This topic is definitely interesting to me since I've been wanting to move out of Texas since my divorce. I have even stricter restrictions b/c by living in west TX, I am far from any other city and would be far from my kids' dad if I was to move anywhere.

I want to start the court proceedings to leave. I'm not even looking to leave the state, just to another city where I might find more services for my son. A move would do so much for me, personally. I am very very very afraid of facing my ex in court. He has much more money than I do and would try to take the kids from me just out of anger. I'm sure that I could get people to say in court that the kids are better with me.

Any ideas? I like the mention of advocacy groups. Do you have more information?
Angie
Posted By: musicalmom

Re: Welcome to the new Autism Spectrum Disorders f - 08/31/05 02:48 AM

If you could go ahead and pinpoint where you would like to move to, and SHOW how much extra support your son would get from services there, I would think that would go a long way with the court. It would be the same thing if a child had cancer and a mother wanted to move closer to a children's cancer hospital (or it should!)

It might also be helpful to get your child's doctor or psychiatrist on board with you. If they back you up, and are willing to in court, even just in a written statement, it makes an impact.

In Mississippi, children normally get to choose what parent to live with at age 12, my son's psychiatrist said he was not mentally capable of making that decision at 12, to hold off until he was 14. The court agreed. The psychiatrists have that much input.
Posted By: Bonniesa

Re: Welcome to the new Autism Spectrum Disorders f - 08/31/05 03:39 AM

You can also research cases in your state using google search. I found some interesting cases. Start acquiring letters of reference. I gave the Court Evaluator a letter from teacher, therapists,case worker, volunteers and organizations we dealt with - there was about ten letters in total. I keep my copies in a folder in my emergency suitcase to make sure I have them for future.
Posted By: Handy Andy

Re: Welcome to the new Autism Spectrum Disorders f - 09/05/05 12:18 PM

Hi all! I am new to posting here, although I have read some stuff on here for the last month. I have 2 sons, both are hi-functioning autistic, or PDD-NOS. They are 15 & 20. The younger one is also a brittle diabetic, for 8 years now! I am a single Mom for almost 9 years, & the kids & I get NO SUPPORT SERVICES! I worked p/t until my son was diagnosed w/ diabetes. Our income is hi-end poor, we live on child support & the kids each get a small SSI benefit. No rent subsidy or food stamps, etc. Both kids have been in spec ed 4-ever! Currently, I have been trying to get recreation & respite services through the Taconic DDSO, which is under the OMR/DD, a state agency. The kids were turned down, because their IQ's are too hi! I have seen Moms w/ kids who have no problems other than the Moms were unfit or negligent get a hell of alot of services...I am getting fed-up w/ being constantly broke, socially isolated, stressed out, blah, blah, blah...I do searches on the net & find all these local agencies that are service providers, yet I can't get services cuz the DDSO has turned down my kids! I tried mainstreaming my kids in local places over the years, including youth programs at a local Salvation Army; each time it ended in disaster! Thank God my ex takes them every other weekend & lives nearby. He works for the Railroad & makes a good salary (I should try to get more child support!!!) so I guess I could be worse off. I want to see if life can be better for my kids & myself, so I figured that by posting here, we can network & help each other out! I'd love to find a local support group for other other autistic spectrum parents/families, but it doesn't seem to be in existence! I will welcome any comments, advice, etc.
THANX!!!!!
Posted By: Bonniesa

Re: Welcome to the new Autism Spectrum Disorders f - 09/05/05 03:18 PM

Hi there and welcome to the forum. Thanks for taking the plunge and making your first post. What does DDSO stand for? Is Taconic the area of Upstate NY you are located in?

I like how you described hi-end poor and I agree about those getting more services who have abled kids.

I learned of a backpack giveaway in my own area on the news. All the kids were getting backpacks and school supplies. Here in CA we have Regional Centers and I told the worker last week that Matthew needs new shoes and she said we can try to get something from the Help Fund.

So instead I get in the mail from her a printout from a website called Operation School Bell. A teacher or rep from a school brings kids to get clothing and backpacks. Like I am going to go to the school and say can someone take the class so my kid can get some things? This lady even had the gall to make a comment about my curtains while in my house - yeah I will go buy some now and let my kid go without shoes! She even said something about I can't do this forever (being a home health care worker) - I presume since that is my job through IHSS, so she says I should go out and get a job, put kids in after school care and eventually put Matthew in a residenital facility.

Those working with families have no clue. How does the child support laws work when they are older, since your son is 20, does the money go to you for him or to him directly since he is over 18 - or does that change once he is 21?

What kind of program is your 20 year old in? Is he still in high school until 21? Is there an ARC in your area?
Posted By: Handy Andy

Re: Welcome to the new Autism Spectrum Disorders f - 09/05/05 08:17 PM

Hi & thanx 4 the warm welcome! The state of NY has the Office of Mental Retardation and Developmental Disabilities. The branch that cover my area is Taconic Developmental Disabilities Services OFFICE. Taconic is an Indian word & we have the Taconic Parkway here, so they use that name alot.

Let's see...since my 20 yr. old is still in school, he gets child support till he graduates, when he does, his SSI may increase if he loses support. I will have to go back to court this year & show papers that both kids are disabled to keep my $75 a week in spousal maintenance & maybe even get an increase. My ex makes over $80,000 a year, & I have NOT asked for an increase once in the last 9 years. The reason being if we get an increase in support, the SSI goes down. The end result is the same monthly income, an irritated irrate dad who then won't take the kids every other weekend, & me flipping out! When I go back to court I want to drop my older son from support, get more $$ for my younger son (he is also insulin dependant & on 3 injections a day) as well as more spousal maintenance.

I agree about the abled kids comment you made. Seems like the respite, etc. is based on how ABLED the parents are, not the kids. I am so stressed I may become nuts & then qualify, LOL!

Everytime I hear of some program, I then find we are not eligible for some stupid reason, & the red tape & paperwork seems to make it almost impossible, so I try to take care of everything myself. I am the queen of bargain shopping!

I also have been told by some idiotic people that I should get a job & a life by strangers, & even my own Mom! I have NO CHILDCARE & legally cannot leave a diabetic PDD kid alone, unless I want to go to jail & lose custody, or risk having something bad happen to my son.

I would definitely consider my kids living in a group home or supported apartment after the age of 21, as you have say so over where, when, how & why at that point, & can yank them out of anything that is unsavory.

Both are in special ed 1:8:1 classes & have strong academics.

There is an ARC in my area & they can't do a blessed thing for either kid unless approved by the DDSO, who holds the purse strings...

I would love to go on Oprah or Dr. Phil & clue some people in on this!

There is an old saying "No good deed goes unpunished!" Yes, a good mom to disabled kids gets no help...if moving would benefit the kids, I would do so. I have even wondered about Canada or Norway.
Posted By: Bonniesa

Re: Welcome to the new Autism Spectrum Disorders f - 09/05/05 09:25 PM

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!
Posted By: JessieBoo

Re: Welcome to the new Autism Spectrum Disorders f - 09/06/05 02:45 AM

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
Posted By: musicalmom

Re: Welcome to the new Autism Spectrum Disorders f - 09/06/05 03:26 AM

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="" />
Posted By: Handy Andy

Re: Welcome to the new Autism Spectrum Disorders f - 09/08/05 03:10 PM

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????
Posted By: musicalmom

Re: Welcome to the new Autism Spectrum Disorders f - 09/08/05 10:45 PM

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!
Posted By: anifsj

Re: Welcome to the new Autism Spectrum Disorders f - 09/09/05 04:12 PM

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
Posted By: Bonniesa

Re: Welcome to the new Autism Spectrum Disorders f - 09/09/05 10:41 PM

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
Posted By: Bonniesa

Re: Welcome to the new Autism Spectrum Disorders f - 09/10/05 01:03 AM

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
Posted By: musicalmom

Re: Welcome to the new Autism Spectrum Disorders f - 09/10/05 01:57 AM

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!
Posted By: Handy Andy

Re: Welcome to the new Autism Spectrum Disorders f - 09/11/05 08:36 PM

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???
Posted By: JessieBoo

Re: Welcome to the new Autism Spectrum Disorders f - 09/13/05 02:35 AM

Hi, to answer your question about families? I have family about an hour away, and my mother-in-law lives two hours away. They have been no help at all. I haven't had one night away from my son, and God knows I need it. My mother-in-law is a nurse but her excuse why she won't help me by watching my son for just one night is she doesn't have the understanding on how to care for him? She knows the only problem with him is really his eating, he only eats baby food. He goes to bed at 7 and sleeps till 8am! My mother always volunteers to watch him but I don't know if I can trust her. She is an ex addict, clean for about 7 years and she has Hep C I just don't think I could relax with her in charge. So I can't say my family is not supportive but they do not help me with my son. When I phone my mother-in-law in tears, at my wits end, she says "thats all part of parenting, I raised 4 kids and I made it through", I get sick of hearing that. Cleaning feces off the walls and floor NIGHTLY is not a normal part of parenting. But I get no support emotionally from her, which is what I need. We have stopped calling her. Haven't talked in about 2 months. I wish she would just come over and say, I'll watch him tonight, go out for dinner. I haven't been out to dinner in 5 years almost!! Not to a movie or anything. Its hard to be stuck here 24-7.........with no light at the end of the tunnel.
Posted By: AustinsMama

Re: Welcome to the new Autism Spectrum Disorders f - 09/13/05 02:55 PM

In regards to how our family has treated us....I have to say that we have been truly blessed in that area. I have little contact with my bio-dad, but that has been since forever and has nothing to do with Austin. But my mom and (step)dad have been supportive, for the most part. I think initially they weren't sure why we were making such a deal out of Austin not talking when he was younger, and thought we were over-reacting, but my mom is the type to keep her mouth shut for the most part. And of course now that they realize there is a real issue, they don't say a word about it!
My husband is an only child and so this is the first grandchild for his parents, and they are both truly amazing. His Dad and step-mom have been going out and buying books on autism and constantly ask what they can do to help, and my MIL calls us up every couple weeks and asks if she can babysit on nights she has off.

I really feel for all of you that are alone in this and don't have the support of your family <img src="/images/graemlins/frown.gif" alt="" /> That is just so sad and I'm so sorry that you have to go through all this without that help, it's just so wrong. I wish that all of these family members, especially grandparents could wake up and realize what a wonderful blessing their grandchildren are and start doing everything they can to be helpful and supportive! {{{{hugs}}}} to all of you for going through this

~Niki
Posted By: JessieBoo

Re: Welcome to the new Autism Spectrum Disorders f - 09/14/05 02:57 AM

Hello, the part you said about over reacting to his lack of speech, I know what you mean. My husband said I was outta my mind. He said he didn't talk until he was 3ish so maybe Shawn is just taking his time, but being a mother you just know. He called his mom, (the nurse) and made her try and convince me to just relax. I was saying whats the harm in taking him to the Dr? I waited just to keep the peace........sure enough........Autism! Shawn is my 3rd of 4 children, so its not like a first time mother blowing things out of proportion...........I knew something was up!........but there have been no " I should have listened to you", no " you were right"..........no apology for making me wait 6 months for treatment.............it pisses me off..........I think they act like no grandchild of mine has a disability........etc... He is the first grandson on their side..........you'd think they'd have more of a bond with him. He is super cuddly, always smiling, never has tantrums, never cries, loves going shopping.he is a great kid all around....wouldn't change him for the world, I just wish everyone else thought like that!
Posted By: anifsj

Re: Welcome to the new Autism Spectrum Disorders f - 09/14/05 04:07 PM

I have so much regret for having waited so long to get my son to treatment. Like you, I was told over and over that I was overreacting and expecting too much. Now, anytime I hear that "early intervention is best," I almost want to kick myself. I recently read something very inspirational that has helped me start healing in so many areas of my life that need help. I'm trying to get rid of that frustration and even anger that I feel at all the people who never volunteer to help take care of my son. My parents help financially in every way they can, but they don't ever ever volunteer to watch him so that I can go out. I'm the one who has to sit at home while everyone else gets dressed, goes out, and talks about it the next day. Do you have any idea how it feels to be left behind every single time??? Like you, I hadn't been to a movie or out to dinner in years. I'm now trying to change that even if I feel guilty. My entire day is spent at work trying to make ends meet, and my entire evening is spent dealing with an autistic son and with a daughter who wants desperately to run away and escape her autistic brother. Who can help us? I know how you all feel...I know how you feel. Maybe it will make you feel a tiny bit better to know that someone out there knows exactly how you feel. Trust me, if I could, I'd have watch your son for you so that you could have that much needed hot bath, dinner, glass of wine, and movie.
Posted By: JessieBoo

Re: Welcome to the new Autism Spectrum Disorders f - 09/15/05 02:53 AM

You're such a sweetie <img src="/images/graemlins/smile.gif" alt="" /> I said to my hubby tonight actually that us not having any alone time (dinner out, walk on the beach...etc...) is going to be our downfall. I have so much resentment for him, he teaches Martial Arts 3 days a week and goes to his friends a few times a week, which is fine, however I don't know a single person in the town where I live, other than the Autism people I deal with. I have no one talk to, no one to go for coffee or lunch with. He doesn't seem to realize that I hate having to stay at home all day, everyday. I am starting to hate him for his freedom, he does help ALOT with the kids and I know I couldn't do it alone but still I take it out on him. I get really [censored] off if I have had to clean up [censored] from Shawns room, or puke off my floor knowing that he is sitting at his friends house. I don't know how much longer we will be together. We have talked about it and have decided that if we split he will take Abby (2yrs old) because the both of them ( Shawn is 3) is too much on me right now. I don't even have a job because Shawn has his therapy 5 days a week as well as preschool, I can't find the time. Before I had them I worked 2 jobs and loved it, I loved going to work even though I was making min. wage. It was the having a reason to get up, do your hair, wear make up............now when I get up my hair goes into a ponytail, most of the time without even brushing it first. I haven't worn make up in years and I live in sweats. I have gained like 20lbs since the kids which doesn't bother hubby but it bothers me alot. Boy do I ever sound crazy..........sorry for going on and on, I'm in a mood, hubby is teaching tonight, kids are finally in bed, and I needed to vent! Where are you from? Too bad you didn't live here, we could swap nights so we both could have a night on the town!! thanx for listening, or reading I guess...LOL
Posted By: anifsj

Re: Welcome to the new Autism Spectrum Disorders f - 09/15/05 04:15 PM

Hi, don't ever worry about venting on this forum. I think that's why we're all here...for screaming without actually making noise. I live i west Texas, and I teach school all day. I work because I have to, not necessarily by choice. If I don't work, my kids don't eat, trust me. Would you consider hiring a babysitter? Are you in a situation to afford it? A good place to find someone is by posting an ad in the bulletin board at your college or university's medical or science college. A kid about 19 or 20 years old understands about Autism, yet is poor enough to settle for a few dollars an hour. I recently started paying a 20 year old girl to stay with my son. It's not as easy as it sounds, because she basically watches him sleep. I don't trust anyone to handle him awake. She comes in at about 9 pm. and stays until 12. That gives me time to watch a movie or go get something to eat or get a beer somewhere. Once I just sat in a parking lot and cried. I have to work around her schedule (exams, dates, etc), but she's been able to come in a few times. Also, I gave her VERY specific instructions on what to do in case my son should wake up and start up.

If you can hire someone, I suggest you look for someone from the university. If you hire a medical or science related student, you can mention that caring for an autistic child looks great on their resume. This is how I got my babysitter to do this! I never go very far from home, and I never ride with anyone else for fear that I'll get that dreaded phone call and not have a way of getting home.

Try this if you can. Have your hubby charge more for his lessons so that you won't lose your sanity. It is absolutely not fair that you're cleaning up while he gets to see a different environment, talk to people, and exercise.

If we lived nearby...trust me, we'd swap.
Posted By: Handy Andy

Re: Welcome to the new Autism Spectrum Disorders f - 09/17/05 03:42 PM

you ladies are too good, you need to explore services for your kids...search the net for the state you live in...take a relative who isn't perfect as a sitter, as long as they dont kill the kid it will be Ok, & GET OUT! get some relief..I used to be in the same situation, housebound & a mess emotionally!!! When my older son was young & not talking my ex hubby & parents all pulled the same [censored] about him not talking & delayed me from getting help! O, my do I empathize..there is a light at the end of a tunnel....
Posted By: Bonniesa

Re: Welcome to the new Autism Spectrum Disorders f - 09/18/05 08:59 PM

Ijust got the link in my yahoo alerts for "autism" and this article is from NJ where the Epilepsy Foundation offers respite:

[url=BellaOnline ALERT: For anti-spam reasons, we restrict the number of URLs allowed in a given post. You have exceeded our maximum number of URLs.
Posted By: anifsj

Re: Welcome to the new Autism Spectrum Disorders f - 09/20/05 02:52 PM

Hi Ladies,
A friend of mine just send me an eye-opening thought and I immediately thought of sharing it with you.

Today, take a moment to see yourself as God sees you.

It's true, oftentimes we forget that God has an image of us, and that it must be a pretty good one if he trusted us with so much.

Take Care and Hang In There!
Angie
Posted By: musicalmom

Re: Welcome to the new Autism Spectrum Disorders f - 09/20/05 04:06 PM

Dana (LaciElements) and I had actually had this discussion over in another posting "Finding Adult Time".

I think we'd all be willing to sit for one another, if we just lived somewhat close to each other!

I saw all those orgaizations that you posted Bonnie, but is there anything out there that's like THIS? That we can talk to people and get to know them somewhat. I don't know about the other moms, but I was somewhat overprotective of Michael when he was little. I knew that so much of what he did made little sense, and would make a "normal" baby sitter mad, I didn't want him stuck in "time-out" the entire I was out having fun! Id be in guilt mode for months and never go out again. (I was very fortunate to have family).

Setting up a co-op of moms w/ autistic kids would be a good idea - we'd know what we were getting into, but I have no idea how to start one. Any ideas?
Posted By: Bonniesa

Re: Welcome to the new Autism Spectrum Disorders f - 09/20/05 06:51 PM

I can't remember which thread I posted about my yahoo group called AutismCardClub - but it was just posted on Sat so should be easy to find. Right now it is a commercial break on Y&R so cannot do much as I am putting away laundry and then have a chat to do and pick up kids.

But I am trying to get a chat for us at the site, hopefully by this coming weekend. I thought Sun at 1 pm CA time, which would be 4 pm NY time.

Anyway I got a call from my Brother yesterday before getting kids from school. It had been 10 years since we seen or spoke and he told me my Dad died. Turned out he died last Tuesday and I just find out now. Talk about family!

So he had not spoken to them in 10 years either, seems we both stopped contact when I left NJ the second time when pregnant with Matthew.

I did contact them a few months later to say I had Matthew and then not again for 2 years to say Nicholas was dx and then 4 years ago stopped contact due to negativity.

My brother just learned my kids have autism and he thought both could not talk. They found a paper in my Dad's wallet with my address on it, but no phone number. I have not move and live at the same place for 8 years with same phone number. My Brother used the internet to find my number. My Aunt is 3 years older than me, Mother's younger sister and lives in NJ - her hubby is a copy and she learned my Father died by reading the Obituary.

So I have a sister who is either 40 or 41, just turned one of those earlier this month. She is blind, has been since the age of 8 after the third brain tumor operation. She works with ARC and now the issue of a group home for her.

Also - I took over the Insurance section on Sat and have to explore life insurance for me and want to write about older adults who have disabilities and what happens to them.

Please also head over to the Insuranc forum, it is under Money but not yet listed on home page. I used another ID for that site.

Got to run and catch Y&R.
Posted By: Bonniesa

Re: Welcome to the new Autism Spectrum Disorders f - 09/21/05 06:27 PM

Has anyone been to meetup.com? There is the topic of autism and you input your city and see if there is a meetup in that area.

They changed awhile ago and now there is money involved to run a group. I was going to do it until that happened.

I have a profile on a site called co-abode.com it is for single mothers to share homes with another single mother. It would be nice to use that format specifically for autism.

Also the same for dating sites and one for autism. I sent that idea to match.com a few years ago and never heard back.

The co-abode site has a space where those who have a home and want roomates and then those that want to look together for a home.

I liked it at first, but there are lots of issues like holidays and religion, eating habits and schooling that come into the fold.

Someday maybe I will try to do something like that for those with disabilities.
Posted By: musicalmom

Re: Welcome to the new Autism Spectrum Disorders f - 09/22/05 03:16 AM

I would think it would be very hard to set up living with another person who has a child on the austistic spectrum. That would be blending 2 families with autistic children, and making ALL of the austistic children go through some pretty major changes. Realistic for a night of babysitting, but for living conditions?

Of course I'm looking at it from the problem angle; (4 tantrums instead of 2, eating peculiarities of 4 instead of 2 etc.) What do you see as the benefits of living with someone else who has kids with autism?
Posted By: Bonniesa

Re: Welcome to the new Autism Spectrum Disorders forum - 10/25/05 05:24 AM

Hi Rhonda:

Thanks for the feedback on the site and thanks for taking the time to join. You sure are a busy parent with your msn group, the state group and caring for your daughter.

Visual supports is an area I have issues with and made a complaint since they are not in the classroom and are listed in Matthew's IEP. That is interesting that a psychologist is working on that with you. I communicate with the AAC dept and last year they conducted a few meetings with the therapists, teacher and aide to get it all working in the classroom, but not really at that level yet.
Posted By: Tatuszek

Re: Welcome to the new Autism Spectrum Disorders forum - 11/29/05 10:27 PM

Hello. I'm a parent of a teenager with autism. I have a lot of experience advocating for my child. I saw this forum thru Google alerts. That's all for now.
Posted By: Bonniesa

Re: Welcome to the new Autism Spectrum Disorders forum - 12/01/05 03:39 AM

Hi there and thanks for posting. Feel free to jump into any discussion or start your own on the subject of advocating.
Posted By: Lynn34

Re: Welcome to the new Autism Spectrum Disorders f - 01/29/06 11:51 PM

Hello , My name is Lynn, 34 years old mother of a 6 (almost 7) with Asperger's Syndrome. she also has OCD. She is bright, verbal ( was not always) She spent 5 years in speech, I saw her problems very early on. I was fighting the school from giving her an ADHD Dx'ed and won (with her doctors help) as of now she does not need any type of special services in school she in a mainstream class and does her work on 1st grade level. but I'm worried she having more "meltdowns" and when she get in a place where she is scared. she talkes to herself. well I guess that's it
Posted By: Bonniesa

Re: Welcome to the new Autism Spectrum Disorders f - 01/30/06 03:42 AM

HI Lynn - welcome aboard and thanks for sharing. What State or country are you located in? IS the OCD an official diagnosis? I have not been able to get one for my son and not sure which avenue to take to get that, which type of Dr did you see and do you do any of the CBT therapy?

My son really does not have meltdowns at school, he saves them for the way home when things get uncomfortable or upsetting on the playground, which happens at the end of the day anyway and he holds it in until we get home. I think most kids on the spectrum release their tension in the comfort and privacy of their homes once they get out of school. Not great for the parents, but at least they can maintain until that time.
Posted By: Chelle - Marriage Editor

Re: Welcome to the new Autism Spectrum Disorders f - 01/30/06 04:56 AM

Hi Lynn!

Michael was (still is) in the mainstream classroom, but we always made it a point to give him the special ed "option", so that if he was having an especially bad day, or was having a hard time getting himself under control - he would have someplace safe he could go to. We made it part of his IEP. All he had to do was tell his regular teacher that he needed to go to Mrs. Clark's room (or whichever teacher for that particular grade once he got into middle school) and they knew exactly what he was talking about and there was no problem.

Maybe your daughter needs a "safety zone" like that. She knows she's in the regular classroom, but if she gets overwhelmed, she can step out and pull herself together without the entire class watching her do it. You might speak to the counselor or special ed teacher to see what kind of accomodations can be made.
Posted By: Lynn34

Re: Welcome to the new Autism Spectrum Disorders f - 02/09/06 11:47 PM

Hi Sorry I have not been here in a while.. Had a house full of sick people. Ok To Bonnie I live in In southeast Ga, Near Savannah. In a small county called Effingham. Her OCD is an "official Dx" She got it last year by an Child psych. I went to nero dr first, who sent me there to get it. She also sees an child psychologists Who does an wonderful job.
Michelle,The idea of a safty zone is a gret idea, in the past she would have a lot of her problems home, but that is changing, I see her teacher's next week I will look into trying to give her a "time out"
Posted By: Chelle - Marriage Editor

Re: Welcome to the new Autism Spectrum Disorders f - 02/10/06 12:43 AM

Lynn,

We are in Hall county, Georgia, so you should easily be able to get something in your IEP like that!

I can't believe things could be that different within our own state (or at least they shouldn'tbe).

BTW - I love Savannah!
Posted By: Lynn34

Re: Welcome to the new Autism Spectrum Disorders f - 02/19/06 02:18 AM

Michelle

I talked to her teacher, and she agreed that she needs a time out sometimes. But one of the reasons is I was having a hard time is b/c my Lauryn does not get any services.. She was getting speech but that ended last year. her doctor visits are all done by me. I stopped trusting the school after they tried to give her an ADHD dx'ed. tried to "strong arm" by telling me if I did not put her on meds the were going to call DFCS on me. Well that just made me mad. So I told the school they could not give her speech anymore and that made them angry. Long story short she got her AS dx'ed. and as long as I was tking her to a doctor, DFCS said the school cannot do nothing to me.. Alot of the doctors in Savannah call my school the "country Mafia" so they are like any school in this state.
I moved her from New York 11 years ago.
Posted By: hopekenzierj

Re: Welcome to the new Autism Spectrum Disorders f - 07/29/06 08:18 PM

hi guys my name is candy and i have a 3yr old named hope who is autistic. i knew something was wrong when she was 9 months old and wouldnt do a thing.all she would do was cry and scream. i bought her to the doctors and she was into threapy and has been there ever since. hope isnt my olny child i have a 6 year old with ADHD and a 2 year old as well. hope is very violent and has a terrible temper. she is still in diapers though i am trying to get her out of them. man that is a hard thing to do. she will be startingschool this august and she will be in the special ed class. i think that is were she needs to be. she cant handle alot of people and if around a large group she has a seizure so we put her in that class do to it small size.

she can talk, she is very smart, and she remembers thing like a elephant. she has trouble putting things together in her mind though and there are times when she is have a bad day she dame near drives me crazy.she does give eye contact and affection i have had alot of people tell me that she wasnt autistic for that reason but i and the doctors think she is. she knows no danger, she will open the door for a stranger, walk across the street without looking, touch a hot stove, wonder straight into the ditch, and these are just a few things that have happened in our life.

i love hope with all my heart she shows me the innocents in life even if it is all mixed up into one big ball of stuff i know it is still there.

thanks candy

p.s. hope will be 4 in sept. 2006
Posted By: Bonniesa

Re: Welcome to the new Autism Spectrum Disorders f - 07/29/06 09:08 PM

HI Candy and welcome to the forums. Thanks for sharing about your daughter Hope. I know about touching the hot stove and one of the reasons why I have a hard time cooking with my son Matthew that likes to stim on the boiling water and steam from cooking.

Although it was my son Nicholas who actually burnt his hand on a hot plate a few summers ago at camp. He avoids the stove still to this day.
Posted By: hopekenzierj

Re: Welcome to the new Autism Spectrum Disorders f - 07/30/06 04:06 PM

thanks for the warm welcome. we moms have to always be on our toes. thanks candy
Posted By: DrGwenn

Re: Welcome to the new Autism Spectrum Disorders f - 07/31/06 03:17 PM

Hi Everyone:

If I can contribute any pediatric input on autism, or divorce issues with kids, please let me know. I hope to also see you in the Pediatrics Forum.

I don't have autistic children but take care of many. And, I am not divorced but see the impact on the struggles you all describe on kids every day at work. So, while I can't offer personal experience, I can offer objective tips. Sometimes that can help.

Best,
Posted By: Chelle - Marriage Editor

Re: Welcome to the new Autism Spectrum Disorders f - 08/01/06 04:33 AM

it is interesting how many of us are divorced that have kids on the ASD.

So many Dads ( and a few Moms, too.) just cannot handle the Dx of their child being autistic. i know my ex denied it for years. He finally came around, but it took some fairly "in your face" data to make him see the light.

I've read that the death of a child can either break a marriage or make nit stronger. I would imagine the same things applies here. in the death of a child there is a chance of mourning and recovery. But with soem autistic children we are always left wondering "when is it going to get better?"

please don't misunderstand me, I would much rather have my son the way he is, than taken from me by death. But it just seems like we will finally get a break in his behavior pattern, and then soemthing else goes screwball- and we have to start all over again. my son is too intelligent to spend the rest of his life living under our thumbs - but I wonder if he will ever be able to make it on his own. <img src="/images/graemlins/frown.gif" alt="" />
Posted By: DrGwenn

Re: Welcome to the new Autism Spectrum Disorders f - 08/03/06 01:16 PM

Hi Michelle:

I think you just touched on the biggest frustration and mystery with autistic kids - one step forward, 2 steps back seems to be the pattern for many. And, the stress a marriage is under when grappling with the issues of autism.

The families I've seem with autistic children have found support groups very useful to help give ideas they may not have thought of and just to connect with other families that are going through the same thing.

Just some thoughts - perhaps don't look too far down the road. Sometimes when we do that we miss things we can do today.
Posted By: tamisha64322

Autism Spectrum Disorders forum - 10/09/06 03:36 AM

my name is tamisha crouch. I have a 5 year old son with autism that is very vocal/not so verbal. He is trying to talk. i understand him, but others don't. He is use to his routine. I was wondering if your kids had any problems if they were "out of their routine" for more than 3 or 5 days, if they ever got sick or anything. I recently went in for gallbladder surgery. only in overnight. but his grandmother wanted to keep him for 4 days. He gets sick there, and comes home his happy monkey self. white blood cell count was raised, but went back to normal the next day. Is it psychological? or just wierd? <img src="/images/graemlins/angel.gif" alt="" />
Posted By: katie1054

Re: Welcome to the new Autism Spectrum Disorders f - 12/31/06 07:55 PM

Well, here I am new and wandering all over. I am an adult with Asperger's syndrome. It was awful growing up and trying to be a trapezoid with all those round holes. Preferred to hide in my little world at school-discovered writing as a useful tool in communicating with all the normals out there. Still find it easier to communicate that. I now have a TBI(traumatic brain injury), but never mind why or how, and live on an adequate income. Hints for all you parents, we know you love us, but that love can be sooo painful-we want to show you we love you too-we just don't know how. Touch, verbal skills-scary stuff like that brrr...teach us that other ways are ok. Share cloth, bells, sparkly things, shells, etc. ways to communicate without intimacy-that way we both can I love you without the pain.
katie
Posted By: Gramma

Re: Welcome to the new Autism Spectrum Disorders forum - 01/28/07 07:18 AM

Much of what is discussed comes from the west coast. I live in VA and have a 3 and a half yr old grandson with autism. Any services have to be privately found and paid for. The school
system won't allow the IEP to have Autism Spectrum Disorder on it till the child reaches 7. We are arranging for some services through Autism Outreach here in Northern VA. My grandson attend a public preschhol with non-catagorically disable dchildre, with a special ed techer and 2 aides. The program is not helping him in any specific ways except that he enjoys the interaction of his peers. WE are looking for some advice on toilet training that we would be able to do ourselves. My husband and I, both retired at=re a constant support for our daughte and son in law, who ave 2 other little boys.
Posted By: jaymax

Re: Welcome to the new Autism Spectrum Disorders f - 02/09/07 05:23 AM

Hello everyone!
I feel like I have found a new home! I'm a single Mom of 2 sons, my youngest is 8 and is autistic and non-verbal, my oldest is 11 and has aspergers. I have been divorced since our youngest was just a few months old. My x was a unfaithful too.
I have moved 7 times between 3 states trying to get my youngest the best help possible, we have been met with limited success, but all improvements are a step in the right direction. I just feel so desperate to hear his little voice and it still breaks my heart everyday that he can't talk to me. I think I am dealing with things a little better these days.
I would love to have a new husband.... but I suppose the kind of man I would need to take this on with me are few and far between, he is out there somewhere... but just maybe not in the USA. Ha Ha.
I am so glad I found this site, finally a place I can go and talk to others who are doing this alone. I have also felt like my son is the only one who is non verbal, that is a very lonely feeling, now I know I am not alone. Thanks! Hope to hear from you all soon.
Posted By: Bonniesa

Re: Welcome to the new Autism Spectrum Disorders f - 02/10/07 04:21 PM

Thanks for joining the forum and posting about your family. That is a lot of moving around in a few short years, how did you decide where to go and how have your children adapted to these changes?

Personally I have never associated desperation with my family life or kids, pretty much just accepted the diagnosis and live our lives to the best we can.

I think some therapists are more pushy about my son ever talking than I am. It helps if you grew up with a sibling who is handicapped like I did and puts it all into perspective.

Welcome to the forum - there are lots of threads here you can chime in on based on your experiences. What grade is your 11 year old in, is he fully included? My son turns 12 in March.
Posted By: Bonniesa

Re: Welcome to the new Autism Spectrum Disorders forum - 02/10/07 04:29 PM

Welcome Gramma to the forum. There are some posters that are from the east coast and some even in Canada. Is age 7 the starting age for first grade at schools in VA? That is interesting feedback about their IEP system.

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Posted By: Bonniesa

Re: Welcome to the new Autism Spectrum Disorders f - 02/10/07 04:42 PM

Hi Katie - Welcome to the forum and thanks for sharing your tips based on your own personal experiences and unique perspective.

Feel free to join in on any other threads and to start any with further information you want to pass on to parents, etc.
Posted By: jaymax

Re: Welcome to the new Autism Spectrum Disorders forum - 02/11/07 06:09 AM

Yes we did move ALOT! When I say "desperate" I mean desperate for help. In Illinois, at least the area that we lived in when my son was diagnosed offers nothing. I had three mediations and a due process all in an attempt to get speech therapy, an aide etc.... the excuse for not giving my son what he needed was "If we give it to your son, we'll have to give it to everyone that comes behind him." I just wanted someone to believe in him enough to help him learn and grow. We moved a few times in Illinois due to school districts, and safety. Ultimately leaving the state because things were getting harder and harder for him and the system was not working. We moved to Wisconsin where he did receive aba for a couple of years and ultimately came to Iowa where things are going well so far.
My 11 year old is doing good. He is in 5th grade and has no special education services. His diagnosis came only2 years ago when I noticed how difficult social situations were for him and some other things just felt wrong to me, so I looked into aspergers, some things fit, so I made an appointment to get him evalutated and he was diagnosed almost immmediately. Things like handwriting, imagination, friendship, the typical social graces most of us just come by naturally, he just missees. If he is standing in line and someone bumps into him, he takes it personally even though it was clearly an accident. I could go on forever with all the things that seem minute on a one by one basis, but when all put together are very very difficult.
I feel bad for him because most people think he is just being a brat, because he is very bright, everyone thinks he should know better and he really doesn't. I am amazed at some of the things that upset him, like he won't touch coin money, flips out when he touches something sticky, obsessively collects things. I suppose when I look at my younger son and all of his problems it makes my older sons problems seem not so bad in comparison, but still he struggles and his growth and development need to be cared for too.
I also grew up with a sister with special needs. Growing up my parents forced me to take care of her alot, take her places, hang out with her, basically they babied her and expected all of us to do the same, and it kind of came expected of me that I would care for her, and take care of her. My parents weren't holding any "Parent of the Year" awards and I guess as I grew up, I became more resentful of how my family expected so much of me in regard to the care of my sister, when I was just a child. The thing is, my sister is able to care for herself, the only thing she really can't do is drive. I am quite confident that she could do that too with enough practice. She is the product of learned helplessness. Maybe I just want to make sure that I explore all options for my son, I also dread the thought of my older son feeling about his little brother as I did about my sister ya know? Sorrrryyyyy I talk way to much.
Bonnie, you mentioned your son attends feeding therapy, could you explain? My 8 year old eats only a handful of things, and I have often wondered if feeding therapy is something I should look at. Thanks!!
Posted By: Gramma

Re: Welcome to the new Autism Spectrum Disorders forum - 02/17/07 04:28 AM

Age 7 is the age at which the diagnosis of autism is put into the IEP so that the district obligated to pay for the interventions that the district doesn't provide. All interventions have to be funded privately until school age, which inhibits the early intervention theories. If the individuals can't afford the early interventions they are pretty much stuck or have to move to another area where more help is available. That's just not practical for everyone.
Posted By: Bonniesa

Re: Welcome to the new Autism Spectrum Disorders forum - 02/17/07 08:41 PM

Thanks for sharing about your sister. I wrote an article about the initial feeding therapy assessment I got for both my sons at Childrens Hospital in Los Angeles.

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Posted By: Bonniesa

Re: Welcome to the new Autism Spectrum Disorders forum - 02/17/07 08:57 PM

It sure is an eye opener on what other states laws are relating to school. Based on what you have stated I would have moved to another state long ago. Here in CA we have the regional center system so I am glad we are here. I am from NJ and thought about going back there since I had heard the services there were good, but not going to do that.

We were living in Florida when Matthew was born and I am glad that we left there after 6 months because from my readings over the years that is the worse state to be in.

I know that in some states there are various organizations that pay for therapies. For example Easter Seals, Kiwanis Club, ARC, YMCA, Cathoic Charities, Salvation Army and similar type of places.

I would think that the Virginia autism society chapters would be working with the Dept of ED within the state to change the options for services for families.

I am going to research this further and if I can find enough information write an article on it to let others know how different states are from one another.

Good luck
Posted By: mumofjj

Re: Welcome to the new Autism Spectrum Disorders forum - 04/27/07 08:46 AM


Hi Bonnie,

Im Donna a single parent to 2 children. My daughter Jiquara 12 and son, Jadm 9 years old. Jadm is on the lower end of the spectrum limited verbally, anxiety issues and impulsive. Making good strides with his pecs and teacch at school and home.

Can i just ask a question. I have just received Jadm's iep and areas of concerned abbreviated was F.O.T. would anyone know what this means? Thanks.

Look forward to chatting to the parents here!


mumofjj
Posted By: mumofjj

Re: Welcome to the new Autism Spectrum Disorders f - 04/27/07 08:57 AM


Hi Everyone,

I am Donna a single parent, I live in Liverpool, UK. I have 2 children 12 year old daughter and 9 year old son,10 in July. Jadm is on the lower end of the spectrum, limited verbally using pecs and teacch school/home, severe language delays, anxiety issues. But we have come along way with pecs and he can now string a 4 word sentence on his strip!!

Just like to ask parents here. Does anyone know what F.O.T. abbreviated for on Jadm's iep regarding areas of concern mean... Just received today. Thanks.

Donna
Posted By: Special Needs Mom

Re: Welcome to the new Autism Spectrum Disorders f - 04/27/07 04:30 PM

Hi there. I can't say whether this is the term or not without context, but I did see it used with IEP to mean Foundations of Technology. Hopefully that works in your context.

Initially I thought it may have something to do with Occupational Therapy, as 'experts' often use the term OT as a short form.

Just by the by, you may also consider using custom photo picture symbols. We tried that with our son and it made a HUGE difference, especially with behaviour. It worked so well that I actually began my 'web-life' by setting up to offer them to other parents and teachers as well. You can find more info here if you're interested:
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Posted By: Bonniesa

Re: Welcome to the new Autism Spectrum Disorders f - 04/28/07 06:20 PM

Welcome to the forums Donna. I have never heard of the term and a google search came up with nothing relevant. I am curious that you mentioned just getting his IEP and read this on there - were you not present at the IEP or was this added after you signed it? What part of the IEP was this written into and who initiated?

It could mean something entirely different than here in the States or Canada since you are in the UK, but nothing comes to mind. Perhaps you could post the section this was written in and that could help gain some insights.

What grade is your son in? My youngest is ten and in fourth grade, special day class and nonverbal. That is good news about your son using sentences in his strips. He uses the cheap talk device at home and school and during summer camp they have a Go Tak 9+ that I really like and may purchase. The cheap talk is the school districts on loan to us, but not very portable like the Go Talk.

I tried to get the district to switch to the Go talk but the AAC person said that the buttons were easier to push on the cheap talk and less likely to break or have to pound to feel it registe.

Over the summer I attended a conference and saw a demonstration on the SpringBoard. They are atBellaOnline ALERT: Raw URLs are not allowed in these forums for security reasons. Please use UBB code. If you don't know how to do UBB code just post here for help - we will help out!
Posted By: Bonniesa

Re: Welcome to the new Autism Spectrum Disorders f - 04/28/07 06:35 PM

Welcome aboard Anna. Thanks for sharing your information and providing links. I checked out your site and noted you have some good data and products there. Good luck with it.

Posted By: spectrummum

Re: Welcome to the new Autism Spectrum Disorders f - 08/05/07 09:51 AM

hi
i am shell mum of 6 two with autism one with traits one with lbd
i also have a support group for parents and carers of children with asd
i also have aspergers syndrome
if i can help in any way here or there please ask
love shell
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Posted By: AllAmericanEmily

Re: Welcome to the new Autism Spectrum Disorders f - 09/15/07 05:43 AM

Hello all,
I came across an article by Bonnie on "Rules for Respite Caregivers" that was written well over a year ago. I am not a mother yet, in fact I am trying to make my way through college. I am however a Respite worker, and as well I work for IHSS. I also spent a year teaching at a special needs preschool that specialized in children with autism. I have to tell you I think you all are amazing women. Through my jobs I have seen parents selfishly toss their children aside, finding it "too hard" to handle their children with autism or other disabilities. Others refuse to admit that their child isn't "normal", forcing them into lives they consider normal. All the while the child suffers from not getting the care/attention he or she really needs. I know it isn't easy working with children with any disabilties,but I know that autism can be especially hard to deal with. I just wanted to write and let you know that I truly admire all of you.

P.S. - Not all Respite workers are bad.....but I hear you when you say most people think of Respite workers as "Glorified Babysitters"....nothing makes me angrier then someone telling me I babysit for a living.
Posted By: Suzette

Re: Welcome to the new Autism Spectrum Disorders forum - 09/19/07 02:41 AM

Hi Bonnie ,

My name is Suzette and as I was reading your info and took a look at your picture I have this feeling that we have met. I have 3 boys my oldest , Andrew 16 and my youngest Matthew 13, both are autistic.

I lived in west hills but moved to palmdale 9 years ago. I have been looking to link up with other parents in the antelope valley/ san fernando valley.

I am an advocate and have provided services, and help to other parents free of charge for as long as people have asked for help.

I wanted to start off by asking your group a question. parents that are regional center clients " How many hours of respite care do you get each month ?"

I have notice that the amount of hours given seems to vary for no particular reason.
Posted By: ellyt

Re: Welcome to the new Autism Spectrum Disorders f - 01/23/08 10:33 PM

I did, but you may not like the answer. We used duct tape to keep him from getting his hands in his diapers and then spreading it ALL OVER HIS WALLS! I sent this suggestion to Garrison Keillor who had a baby shortly after we tried this. It really worked for us. eek
I may actually have a picture of it. If I do, I will post it.
Good luck.
Elly
Posted By: maryleila

Re: Welcome to the new Autism Spectrum Disorders f - 02/09/08 11:15 AM

Hi Suzette,
In East Valley Regional Center, it depends on several things. On is how old your child is but I think that now the kicker is how much money you make. If you make a certain amount of money then regional center pays for respite on a sliding scale. But -- that might be when your child hits a certain age, too -- so go in and meet with them and find out. I'd heard it didn't used to work that way but things have changed.
Posted By: greenwhip

Re: Welcome to the new Autism Spectrum Disorders forum - 04/14/08 08:57 PM

Hello.

We adopted a girl at the age of 7. Her mother was mentally retarded and she was not given a lot of attention. We thought she would develop after working with her, but something just wasn't right. She also struggled at school socially and academically. She has just been diagnosed as having Autism Spectrum Disorder. I feel so bad as she probably had this all along, but we just thought she had a low IQ and that she was delayed due to her circumstances before adoption. This is all very new to us and we hope to learn how best to help her. The school has not responded to her dianosis of ASD, but want to test her to be eligible for learning disabled for special education. We will see how this goes, but hope they will look at both as both influence her learning. smile
Posted By: Bonniesa

Re: Welcome to the new Autism Spectrum Disorders forum - 04/15/08 02:50 AM

Welcome to the site Greenwhip. What State are you in? While you are waiting for all the assessments is it possible for you to get an aide for her at school? What grade is she in?

Good luck and feel free to read the site and ask any questions so others can share feedback based on past experiences to help you along.

Posted By: calligrapher

Re: Welcome to the new Autism Spectrum Disorders forum - 06/17/08 03:28 PM

Hi I am a mother of many, but my second daughter has Rett Syndrome-which is on the extreme end of the Autistic spectrum. I haven't read all the way through here yet, but are there any other parents of Rett girls??
Posted By: Whatever

Re: Welcome to the new Autism Spectrum Disorders forum - 06/23/08 08:28 PM

Hi,

I have two children with ASDs - my son has 'classic autism' and my daughter has AS

Alex AS
Posted By: collier5

Re: Welcome to the new Autism Spectrum Disorders forum - 06/26/08 04:17 PM

Hi everyone,
I am new here. I have 3 girls. The oldest (10 yrs old) has Aspergers as well as Bipolar and ADHD. Turns out my husband has all three DX as well although when I married him, we only knew about the Bipolar. It has been quite a journey. Preschool and early elementary school, with no DX, was a nightmare. I pulled her out to homeschool her after a horrible 1st grade experience. During the time she was at home with me we were able to get all the evals done and get her the therapies and meds she needed. I put her back in public school this past January. Now with official DX, the school put together a 504 plan and really worked with her. Her teacher was great. Still, her interaction with other kids was a problem. But after reading some posts on here by those with older kids who have gone on to succeed and excell in what they do, I have hope that no matter what, it will be okay. It is nice to know I have a place where I can talk to others who understand the challenges faced each day. So, hello. And I am glad to be here.
Posted By: Bonniesa

Re: Welcome to the new Autism Spectrum Disorders forum - 06/26/08 07:51 PM

Welcome to the new visitors here and thanks for sharing about your kids and offering insights.
Posted By: Tylers Mom

Re: Welcome to the new Autism Spectrum Disorders forum - 07/28/08 06:18 PM

I am new here. We have adopted 2 children and the oldest has autism and global delays. I would like to know if I can homeschool him and what do I do ? We live in Delaware.
How do i get curriculum specific to his needs ?
He goes to a special school, but it seems he learns more at home than anywhere.I kept him home from summerschool this year and noticed improvement in several areas.
Can anyone please help me ?

Renate
Posted By: mehry

Re: Welcome to the new Autism Spectrum Disorders f - 08/16/08 09:01 PM

Hi. My name is Mary. I'm a mother of two, My 4 year old daughter, Kaia, is NT. My 3 year old son, Aaron, was diagnosed with PDD-NOS earlier this year when he was 2 1/2. We had intensive in-home ABA therapy (covered by the State)for a few months until he turned 3. This helped him tremendously. He will be starting special education preschool at the end of this month. I look forward to reading posts in this forum.
Posted By: Bonniesa

Re: Welcome to the new Autism Spectrum Disorders f - 08/16/08 09:56 PM

Welcome Mary. Good luck to your son in the preschool. Both my sons did preschool special ed at the Elementary school around the corner. One year I had them both there, one in AM and one in PM.
Posted By: yadira

Re: Welcome to the new Autism Spectrum Disorders f - 09/03/08 12:25 AM

hi,im yadira ,and my english is so bad,i speak and write spanish,but i speak english welli hope that could understand me here in the forum what im trying to say,i have a 4 years old boy isaac whit autism,he was diagnostic 2 1/2 years old he is not speaking well,we speak whit him english he understand more english than spanish and he is not able to understand what the people is saying but sometimes he understand well,he speak short words,he is like a other ''regular kid,he play,sing,use the computer,play wii,playstation etc,etc..now he is in special ed.presschool and his teacher said is good idea he go a regular presschool..,but i feel that he needs more special help,my husband say is good he go whit regular kids because he could learn to speak and progress...i dont know what to do about his school program someone could write me back please.or write me e-mail..co_madre_03@hotmail.com thank you smile
Posted By: Chelle - Marriage Editor

Re: Welcome to the new Autism Spectrum Disorders forum - 09/03/08 01:18 AM

Hi Yadira,

(I think your English is very good).

I wonder how much of your son's not understanding could have to do with the language barrier?

It is hard enough for children with autism to learn to communicate, and it sounds like your child may be doing it in two languages.

I know my own son went from hardly speaking at all to full sentences like BAM! It could be that when your child is comfortable enough with his speech, he will do the same.

If your child is socially having a good time in "regular" pre-school, then I think it is fine to leave him there, and may be seek spech therapy for him in addition.

If he is staying upset about school all the time though, then you might want to look at putting him in special ed.
Posted By: yadira

Re: Welcome to the new Autism Spectrum Disorders forum - 09/03/08 03:06 AM

thank u so much for your support..
write me soon..
Posted By: Bonniesa

Re: Welcome to the new Autism Spectrum Disorders forum - 09/05/08 06:43 PM

HI Renate -

Welcome to the forum. I am in CA and we use K12 curriculum through a Virtual Academy. I think delaware might be a state that uses the same system.

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Posted By: Bonniesa

Re: Welcome to the new Autism Spectrum Disorders forum - 09/05/08 06:46 PM

HI and welcome Yadira -

I did get your message and will respond via email over the weekend. My son uses the computer for homeschooling and needs to get back to it, I am just checking a few things for a moment.

Is your son a regional center consumer? Has there been an IEP, did he get dx from school district? My kids went to preschool special ed, you can call for an IEP meeting and request a change.
Posted By: yadira

Re: Welcome to the new Autism Spectrum Disorders forum - 09/08/08 12:34 AM

thank you Bonnie for answer me,yes my son get his 2nd.diagnostic and he has autism,and he have to continue in a especial ed.presschool,coz he is not ready yet for a regular classroom,i was confusided coz isaac know to many things but he is not able to understand to the people and make a conversation,but in a year his progress was great.. he is not ready to be in a regular class yet..that's was the last results thank you so much and i hope be your new friend in this great forum.(sorry for my bad english).isaac got his first diagnostic 2 1/2 years old,now he is 4 years old.
Posted By: dragonfly213

Re: Welcome to the new Autism Spectrum Disorders forum - 12/22/09 10:00 PM

Hi Bonnie! Your neighbor and occasional laundry buddy here :) hope you are all having an excellent holiday :) Jeni
Posted By: MysticMommy

Re: Welcome to the new Autism Spectrum Disorders f - 10/09/12 09:59 PM

Hello everyone. Newbie me here. I am a single mom of 2 boys with Autism ages 7 and 4. I absolutely love being their mom!! Though, we are still working on finally (!!) get OT, we are growing together. I am ever so thankful that I was blessed with 2 boys with autism. My older sister had CP, and that taught my mom and I how to have great patience and to accept people whoever they are. I volunteered in the &quot;autistic class&quot; (that's the name they said it was in grade school) and loved it! Grew up and worked in the MR/DD field. I told my mom when I was very young &quot;I want to have kids that are a little hard to handle, because those are the kids who need extra love&quot;. I didn't know I was going to end up with 2 boys with autism, but I assure you, God granted me what I asked for and certainly they need extra love!! My great gran used to tell my mom that &quot;children are not spoiled, they are overly loved&quot; and it couldn't be more true. Life has been challenging, but it has shown me that sometimes, I have to slow down, change how I view the world and change how I do some things. My children are my blessing and I don't know where I would be without them. I lost my mom last year on Valentine's day and without my boys, I would not have been able to get through it. I'm always interested in new advice, willing to try it and hopefully if even a small amount, help someone else out that we have been through.
Posted By: Carolyn Golden

Re: Welcome to the new Autism Spectrum Disorders f - 12/05/12 11:58 PM

Wow - I am glad I landed on this forum! My 3-yr-old just got diagnosed with autism and it is really hard to swallow - I guess I am kinda depressed about it right now. But I know it is an accurate diagnosis - he has some of the signs, but is pretty &quot;high-functioning&quot; I think. He makes eye contact with his parents and his sister who is 1 year older. And when we change the routine he is ok with it, doesn't do a lot of shimming (I think that is the right term), has a lot of interests and tries to interact with other kids sometimes. He is in speech therapy and once they get his paperwork all sorted he will start through the school district with ABA and speech/social skills. I just need to find a support group of other parents in our situation so we don't feel so alone. He is just such a joy to us and we want him to have a bright future, so my husband &amp; I will have a lot of work ahead of us to make sure he gets the tools and skills he needs. Anyhow, that is my story for now, I am going to keep reading through this forum to see what other parents of kids on the spectrum are going through.
Posted By: Michelle - Short Stories

Re: Welcome to the new Autism Spectrum Disorders forum - 12/10/15 07:21 AM

NBC4

Hi Tara, this is Michelle from the Teen Site.
I thought you might find this link interesting.

Chel
Posted By: DDtop

Re: Welcome to the new Autism Spectrum Disorders forum - 12/05/16 05:06 AM

Hi ive been diagnosed as a male with Asperger's had Autism said from when was young but not much was done about it!
But now 55 got confirmed last year yes it has it's issues but also some great points to it and ive survived on my own so long it does causes issues with relationships mostly because not aware of it!
There are so many sides to it though as one with me having Raynauds i don't feel the cold unless a chill/draught then frozen so causes many issues with the Raynauds plus having Fibromyalgia add's to that as tired so often get quite agitated that can't do things plus you can become very destructive within/to yourself as depression is one area have to watch one reason im classed as a vulnerable adult which i can see the reason why as can turn in on yourself so become withdrawn etc
you can push people away/keep at arms length but if people understand/know more they can come to understand how/why/what/which etc it effects us
Quite often you just want someone to be there for/with you but don't know how to ask or say in a way that you understand.
so yes it is complex but with right methods can be easier.

Hope that helps
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