Hi new here and frustrated....

iVillage Member
Registered: 03-26-2003
Hi new here and frustrated....
6
Thu, 02-02-2006 - 1:40pm

I'm Dionne, momma to Stuart almost 5, 2 weeks away, we are getting our diagnosis today, and the psychologist is leaning towards PDD-NOS, I'm in Canada and I don't mean to offend but for us this is a cop out, if we don't get the ASD diagnosis we don't get the funding to get Stuart the support I feel he needs and that he deserves, no teachers aid for kindergarten or subsequent years and that just infuriates me, we get whatever the school system offers and that is it. He has only ever had speech therapy 2 times per month and yes we had early intervention at age 3 he was on a wait list since age 2 when we knew there was something not quite right, funding just isn't available for him to be getting the support that I would like to see him getting ST 2x's per week but there is just no way, at $90.00/hour we just don't have that kind of money and with no ASD diagnosis no funding to pay for it. How do you folks handle it? Are any of you in Canada, BC more specifically I know each province is different? can you direct me to what I should do where I should go or who I should contact to get my son the help he should be getting? I don't understand why the need to diagnose PDD-NOS as part of ASD but not be ASD so not eligible for the benefits, these kids would benefit from the treatments of Autism so why not make the treatments available to them not exclude them. I'm sorry I'm just so frustrated right now, thanks for letting me vent.

Dionne




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iVillage Member
Registered: 04-11-2003
Thu, 02-02-2006 - 4:11pm

Hi Dionne. Welcome to our group. I'm sorry I'm not from Canada so I can't offer any specific advice. It really stinks your little one isn't getting the help he needs. Don't apologize for venting. That's what were here for.

Samantha

Samantha
iVillage Member
Registered: 03-26-2003
Thu, 02-02-2006 - 4:42pm

Thank you Samantha, I just think it is so wrong for any of our children to be left behind because of bureaucracy, it just stinks. I have done more research and found that If Stuart does get the PDD-NOS diagnosis then he will basically be forgotten about, he will get no extra support at school unless they apply for the services if they think it is necessary, hmm like they will be an advocate for my kid. I just think this is so wrong. Our doctor doesn't want to label Stuart as Autistic but PDD-NOS is still autism so what is the difference, I just don't get it. I tell you he sure is going to get an earful from me in a couple hours when I see him if he thinks I'm going to let him let the government forget about my little boy.

Thanks for the welcome, it helps to know that there is a place to come for support, and vent, LOL, my hubby just doesn't get it, he just smiles and nods and says yes dear what you said.

Dionne




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iVillage Member
Registered: 03-26-2003
Thu, 02-02-2006 - 4:43pm

Hi Dionne,

I am so sorry for your frustration. Is there any way to ask for a second oppinion or to contest the diagnosis? Most of us want to automatically say "But PDD-NOS IS an Autism Spectrum Disorder!" But I understand how government agencies work and that is very very frustrating.

Are thier advocacy or autism support groups in your area that maybe can help you through all the red tape?

For instance, in California where I am for the longest time kids with PDD-NOS or Aspergers where told that they wouldn't qualify for regional center services automatically. You couldn't even get through the intake screener. However, it was another mom/advocate who had taught me how to go about it. That you had to insist on an evaluation, put together all the documentation proving that the child met autism standards per the law that governs regional center and when denied initially - appeal it. Usually on appeal it was accepted. Worked for us the first time and the second I didn't even have to go to appeal it.

There may be some similar way to access the funds through Canada. I would suggest getting a copy of the law and reading it and studying it until you understand why or why not your son gets services. And if neccessary - appeal.

Do all of it in a very professional, business like manner but don't just lie down for it. Learn your sons rights and make sure he has access to them.

Good luck,

Renee

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iVillage Member
Registered: 02-24-2004
Thu, 02-02-2006 - 4:43pm

Hi Dionne!

Welcome to the board! I'm from WA state, so I can't answer your questions either! Sorry! I can't remember if we have anyone here that's from Canada. We've had lots of new people on the board lately!! Hope someone is around here that's able to answer your questions though.

My son is 7 and he got dx'd HFA when he was 5yrs old. I know how frustrating it is trying to get everything your child needs. Hope your able to get everything resolved for Stuart. Keep in touch and let us know how things are going! This is a great place to come for advice, or even to vent!!

michelle

iVillage Member
Registered: 10-03-2004
Thu, 02-02-2006 - 8:31pm

Dear Dionne,

I am always promoting this other board here BUT the savvy gals at IEP Board here at iVillage definitely have a couple of Canadian posters with lots of special ed backgrounds both as moms and professionals, PLUS they are the gals in the know for all the legal wranglings with schools and services. They may also know lots about how to deal on other fronts in Canada.

I have heard this before, that services are much harder to get up north there. And it's hard enough here, I think!

Good luck, let us know how things are going, OK? (((((HUGS)))))

yours,

Sara
ilovemalcolm

iVillage Member
Registered: 03-26-2003
Thu, 02-02-2006 - 9:19pm

thanks so much for the welcome. We are now home from the meeting and are no closer to a diagnosis. The psychologist feels that Stuart is so borderline that he wants to send him for a second opinion, so I am completely relieved. They are sending him to the top Autism assessment facility in BC, so I am thrilled with that, not thrilled that I still don't have a diagnosis after 3+ years of this but what is another couple of months right.

The psychologist is leaning towards PDD-NOS with ADHA, and Obsessive compulsive as well. So no diagnosis as of yet we have to go through the testing all over again in a couple more months. Our speech therapist was at the meeting and I spoke to her about the lack of funding and she told me that if Stuart gets the diagnosis, then she will help me get the funding and told me that there are ways around the system, so that is wonderful news to know that there is hope, you just have to know your way around the system, and now I know that there is someone out there who is willing to help me help Stuart when and if we get the diagnosis.

Thanks again for the support, I just wish I had the answers I needed.

Dionne




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