What support is out there for parents?

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bal1985
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Age: 32
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10 Dec 2011, 1:02 am

Hey everyone!

I haven't introduced myself yet so I just wanted to say hello to everyone! My name is Brett and I have a 2 year old son with PDD-NOS. I've posted a few times here and there but nothing much. You guys have been great with helping me out.

On to my question...hmmm actually question(s).

- My son was diagnosed with PDD-NOS a few months ago, we went to two different doctors for two opinions. One doctor was at Children's Hospital CDU (http://www.chp.edu/CHP/cdu) and then a few weeks later at The Autism Center of Pittsburgh (http://www.autismcenterofpittsburgh.com/). Both said PDD-NOS and one said they he just on the edge of the spectrum and told me not to tell people that he has autism, just PDD-NOS. Is their a huge difference? Do you guys think 2 evaluations are enough? For some reason I feel like they didn't do enough in the little time they had this my son, I left with so many questions rather than with answers. I don't know what to do with this part of it?


- My son has been getting therapy from TELIPA or The Early Learning Institute (telipa.org) for quite a while now, I guess it's free from the state? Every week a Speech-Language Pathologist would come and also a Occupational Therapist, just for an hour. They still come today and they actually recommended my son to go to Children's Hospital for an evaluation. At first we thought that maybe he just had speech problem, but overtime I got my concerned and wanted to do more. Anyways, my son's case worker who oversees everything came with up to his evaluation. After he was diagnosed the therapist or whatever you want to call it, from Children's, gave us a list of places to call for therapy. Our case work picked a place out from the list that she personally recommended. We trust her, so we went with them. They are called SouthWestern Human Services (shs-pgh.org). I'm trying to make this short...Everyday my son's TSS(is the correct abbreviation?) worker comes out to the house everyday, Monday through Friday for 3 hours everyday. Right now she is just getting started with him, just letting him play, I guess building up a relationship with him? I had to get rid of the last TSS because it felt like nothing was getting done and I was getting angry. He seemed like he didn't care or just wasn't interested. I contacted our BCBA and told him that I would like to switch. He tried telling me that most TSS are just out of school and really don't have much experience. I couldn't believe that? I don't want my son to my TSS workers first child. I want a TSS with experience and so forth, someone that I know will be able to help my child as much as possible. Even his speech therapist said it's hard to find a good TSS, that they are extremely underpaid, some just don't care or just take cases that are closest to their house, etc. She said if I find a good one that to never let that TSS go. I guess what I'm asking with this question is what MORE CAN I DO? Am I doing the best that I can? Is there anywhere else I can take him, maybe a better place that can help him even more? I want the best option for my son so he has the best opportunity of having a fulfilling normal life. I just don't feel that these TSS workers are his best option or the answer. I need some ideas of what I can do, who should I contact, etc. What are you doing for your children? Right now all of his therapy is free, I'd be willing to pay for a school, pay for a better therapist to work with him, I'll do whatever it takes. Are there in schools out there for him, where I could be with him during the day?

- I don't know if anyone can help me with this or not, kind of a different question. I'm unable to work because of my son, he needs someone with him pretty much at all times. Plus he gets his daily therapy at the house, someone needs to be with him. Are their any benefits out their that can help us out? Money is pretty tight, Mom is doing all the working, but one income is just not enough. We though about daycare but everyone agrees, including the therapists that daycare would be a bad idea right now. So if anyone is in the same boat as me and has go help please let me know what.

- Last question for now... Can you guys recommend any reading material, magazines, books, websites, hotlines, group meetings, etc. I want to learn more about my son's PDD/Autism, I want to know everything about it, what I don't understand, how he sees the world right now, how I can help improve his daily life and so on. Whatever you think will help me understand this better please let me know. Right now I'm having a very hard time with this. I'm going through the "why my child" stage now, I'm very angry at everyone, very defensive, ready to pop off at any moment, my anxiety and depression are at an all time high. What is everyone doing to cope with this, any support groups out there I can go to? I really want to meet other parents, my age or not, that have children with the same disabilities. I'm having a real hard time finding friends for my son. I take him to this play center near me pretty often, it's in a church, it's pretty big, he loves it. Anyways, most kids these days are mean and nasty, their parents don't care. I want him to interact with other kids, I feel that playing and being with out kids his age will help improve his PDD drastically. When we go to the play center, he is just now starting to go up to other kids and saying "HI!" and waving his hand. This is a GIANT step for him as he is extremely shy, the who no eye contact thing. Most kids don't want to play him because they don't understand, then I have to sit there an tell the parent how he has autism and it starting to really piss me off. Some parents look at you like with that dirty look. I want him to be around kids like him, but like I said there is no White Pages for kids with autism, I have no clue on how to improve his social skills among other kids like him?


That's it for now, thank you for letting me vent. I'm pretty upset as you can tell by my writing, it's all over the place, just like my mind right now, racing everywhere. I look forward to finding some new friends on here and I hope that I can help some of you guys out also.

Take care and happy holidays!
-Brett



NTmomLovemyAspie
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10 Dec 2011, 9:17 am

I am pretty new too (new step mom to an 8yr old Aspie) so I may not have the best advice but I can definitely empathize! I spend a lot of time crying because fighting the schools can be so frustrating, and not being on the same page with your kid can be frustrating & confusing for both of you. I would say a few things:
-my son likes to direct the rules of play, so he gets along best with kids who are laid back and can go with the flow. Often times he gets along best with older or younger kids but not the same age.
-There should be parent groups in your area if you live anywhere near a big city. Try websites like Meetup.
-It really helps to have an extended family that's supportive. Don't feel guilty for needing breaks or date nights. Anything you can do to nurture yourself will help you be the best parent you can be, and connecting with your partner can be a good reminder that you're not alone.
-a few of my friends have suggested applying for disability. You go to the Social Security office to apply and it is free to apply so no real reason not to try. But we don't have a social worker so maybe you already did this? (This may be my lack of knowledge coming through! Sorry if so.)
-For school age you'll design a 504 or an IEP. By law you're entitled for your child to experience a free education in the "least restrictive environment" through age 21. If you feel your child isn't being treated fairly you can demand a meeting, testing/evaluations, and a circuit referal.
-I enjoyed the two books by John Elder Robison, the Temple Grandin movie w Claire Danes, the character of Sheldon on Big Bang Theory, and the character of Abed on Community. Also theboy from August Rush.I hope something in this list sparks your interest!
-All of my friends remind me to take a deep breath.

Best of luck and it sounds like you're already off to a great start.
NTmom



SylviaLynn
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Location: Albuquerque, NM

10 Dec 2011, 9:43 am

Have you tried posting in the Parent's section? I understand the 'run in circles, scream and shout" stage. It's grief and fairly normal. You have a diagnosis at 2, that's pretty good. I do think you are worrying just a bit too much just at the moment. Typical 2 year olds aren't all that great at playing together.

You're doing as much as you can at the moment. Breathe. Look through the Parent's section. Ask questions. Use the internet. Your kid's therapists should have some ideas for parent support groups. Here is a link to your state's autism services division:
Pennsylvania autism services

If that isn't the right state a search should find it pretty easily.

PDD-NOS is on the spectrum, yes. It's often the first diagnosis a little one gets because it's just too early to see the whole picture. You are very lucky to know so early. If he gets the support he needs he has every chance to lead a life that suits him, which will probably be different from the life you first envisioned. That doesn't mean it won't be rich and satisfying to him.


_________________
Aspie 176/200 NT 34/200 Very likely an Aspie
AQ 41
Not diagnosed, but the shoe fits
10 yo dd on the spectrum