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waiting for an Autism Dx and i am not sure how i feel


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i just need to get this all out and i dont have anywhere or anyone to talk to so here we go.

 

my son will be 3 in 2 months. we always thought something was off with him, and he's non verbal. we had him evaluated for ST. yeah they suggested we get him evaluated for ABA, and get him seen by a developmental ped. for a assesment. so basically we have found so far he has no receptive language at all. i thought he was understanding but he doesn't. he knows his name. he doesn't even understand mama and dada. he use to say 4 words but regressed this past year to no words just grunting and pointing. so i researched autism and i think my heart fell because he had tons of red flag symptoms that i didnt even know to look for.i wont bore you with a big list but he had way more than the required amount of symptoms to get a autism dx.

 

we took him to the family doctor and she referred him to the pediatrician. but because we live in ontario canada this stuff takes time. so basically i have to wait to get an appointment which could take months and then they will refer me to a developmental ped which in the end could take me 1-2yr to get a dx. then i found out to get him ABA therapy which is covered by ohip(goverment healthcare) the waiting list in my area is 1yr after u have a dx, and then they will give him 6 months of therapy. after that i have to put him back on the bottom of the list and do the process all over again. and i feel like he is getting worse and we can't wait possibly 2yrs for help.

 

DH got a 2nd job so we can try to save for therapy because right now we can't afford it(it would cost $900 a month) so its just really stressful. i want to cry , i want to scream and i am feel angry at the system right now. we are getting materials to try to do some ABA stuff at home and i am looking into possibly getting the PECS manual to try to maybe get him started in awhile and just reading , and more reading. i had plans to start homeschooling him at 4 for jk but it clear he won't be ready. i am just lost and i feel stressed out and semi- depressed i really don't know what to do or what i should do. i'm not asking for anything specific. i just needed someplace to come and have someone understand.

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I'm so sorry! We waited and waited and finally went to the doctor with our concerns at age four. It took almost a year to get the diagnosis. He started speech and OT in the meantime, and is still on a waiting list for a few more years for ABA therapy. I know how hard the wait is. We got this book while we wait. I haven't done everything, because my son is pretty high-functioning by this point, but a lot of it has been helpful: http://www.amazon.com/Educate-Toward-Recovery-Turning-Tables/dp/1847991467/ref=sr_1_1?ie=UTF8&qid=1333497833&sr=8-1

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:grouphug: It is hard. It gets easier (emotionally anyway) with time. :grouphug:

 

I, too, suggest the Hanen materials. You don't have to wait until someone else can provide therapy. You can work with him at home. It will, quite possibly, be better than what you could get otherwise. Floortime is another thing you could learn about and do yourself. Hanen is quite similar though I think and easier to start for sure. :grouphug:

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:grouphug:

 

I am in Alberta, and I know of at least 3 families that relocated here from Ontario to access services for their children.

 

I also agree with the More than Words recommendation.

 

Also look on the Hanen website to see if there are any more than words programs being offered near you (Hanen is located in Toronto, so good chance you will find one close by) It is a fairly cost efficient way to get some speech therapy.

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:grouphug::grouphug::grouphug: It is so frustrating when the choice is between a ridiculously long wait to see the doctors/therapists who accept insurance and paying thousands of dollars out-of-pocket to get in sooner. :mad:

 

Another great resource for activities you can do with your child is Relationship Development Intervention with Young Children.

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I am so sorry :grouphug:! This does suck! I am in Canada also (BC) but since I have not seen anything we cannot manage at home so far, I have not pursued an evaluation and have tried to tackle what I feel I need to with my boys through personal research and by reading a lot on this forum. I most definitely would seek an evaluation in your case! I do not have any advice to give but was just wondering if you have checked the rates for getting an evaluation across the boarder. Not sure how convenient that might be but it might be worth your while. Hoping the best for you and your family :grouphug:!

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Question, have you gotten in touch with Autism Ontario (formerly Autism Society of Ontario)? When I was considering an evaluation I went into the Autism Society of BC website and there was a lot of helpful information. I just though I would mention it, in case there is something they can do to help. Here's the direct link:

 

http://www.autismontario.com/client/aso/ao.nsf/web/About+Us

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Question, have you gotten in touch with Autism Ontario (formerly Autism Society of Ontario)? When I was considering an evaluation I went into the Autism Society of BC website and there was a lot of helpful information. I just though I would mention it, in case there is something they can do to help. Here's the direct link:

 

http://www.autismontario.com/client/aso/ao.nsf/web/About+Us

 

no i haven't been here yet but i will look at it today! thanks so much for the link. i will also look into prices across the border like you mentioned

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(HUGS) Do you have an iPad? I would save for one. There are so many wonderful apps for Autism and through ~ 2nd grade. The iPad really opened my son up and proved that he knew things he just couldn't get out. It was really life changing for him.

 

yes we do have an ipad that we are using specifically for him right now. not really sure on good apps though but if you have any suggestions or if there is a thread on it let me know!

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Big hugs to you, Amirah. I too know that special pain when you realize your kid doesn't know the word "mama." My ds could point to everyone in the family EXCEPT me until a few months ago.

 

 

Start with this app: http://itunes.apple.com/us/app/aba-receptive-identification/id346469797?mt=8

 

Any by the same developer are excellent. There are many levels, and you can start with the simple one I linked above and progress.

 

Red Fish (poisson rouge) is also good, for NT and SN preschoolers. http://itunes.apple.com/us/app/redfish-4-kids/id364898590?mt=8

 

If you're on pinterest, look for pediastaff's boards. They have TONS of ideas you could do at home and links to all sorts of help for various needs.

 

Look on Facebook for Autism Picture Cards. They have loads of PECS symbols in the photos section. You can print them out on cardstock, slap some velcro dots on the back, and have an instant PECS notebook. I started off by putting a velcro strip on the fridge. I put 3 or 4 cards on the strip of snacks that were instantly available to ds, so he could start indicating a choice for me. Then I'd add in a picture of what we were going to have for supper, and we'd make that connection for him as we served the food.

 

He quickly surpassed the PECS, and moved on to using a GoTalk device. He became frustrated with that because it didn't have preprinted what he wanted to say, and now he uses ProLoQuo on the iPad. I say this not to brag, but to let you know there IS hope. I read this line somewhere along my journey, and it really resonated with me.

 

Autism is a developmental DELAY, not stasis.

 

It's become my mantra for those dark days.

 

BTW, I don't see why you couldn't start homeschooling him at 4. Your goals will simply be different. Look up floortime on youtube and plan on using that as your "lessons" for a while. Anything social counts, as well as teaching him to use PECS.

 

Hang in there, and good luck to you and your sweet boy!

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no i haven't been here yet but i will look at it today! thanks so much for the link. i will also look into prices across the border like you mentioned

 

I hope you find a solution! I know I would be devastated too! Keep us posted and feel free to PM me if you prefer. I would love to hear that you are getting the help you need for your boy!

 

ETA: Our boys are almost the same age. Malcolm turned 3 in January. I would be very stressed dealing with what you are dealing with too. Hope all works out.

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