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#1 of 16 Old 04-13-2012, 06:22 AM - Thread Starter
 
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I have been lurking on this forum since ds regressed at 20 months (now 32 months) and I started to suspect an ASD but I figured I'd come out of the shadows and hopefully drum up some support for this big day for our family!

He has been in ST, OT and seeing a DAN! physician since around his second birthday but having a diagnosis is the only way to get the behavioral therapy he needs without paying fully out of pocket. He has already been diagnosed with SPD (hyporesponsive/sensory-seeking) and is non-verbal. At this point I'm more nervous that he *won't* be diagnosed if he's having a good day or doesn't do any of his more "stereotypical" behaviors. My dh thinks I'm crazy for being afraid of him not being labeled but I know in my heart (and have for a year, contrary to dh who's still coming to terms with it) that he has an ASD and that this is a gateway to getting him some help.

Please keep my sweet, beautiful and amazing son and I in your thoughts this morning! I will come back and post this afternoon, on the road to the developmental pediatrician at the moment. smile.gif


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#2 of 16 Old 04-13-2012, 07:55 AM
 
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You're going to do fine. :) A skilled dr will know exactly what to look for and what they see. 

I look forward to your update. :)


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#3 of 16 Old 04-13-2012, 10:57 AM
 
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You'll be fine.

 

I watched my son's ADOS last summer and read a lot about the test afterwards. The ADOS is structured to push kids to display ASD behaviors if they have them. There are several instances where the evaluator does what is called a "push."  Ie. starting a conversation, asking questions, asking for explanations and demonstrations, etc. 

 

If it's there, it should show. Don't worry.

 

I was really glad that I watched the ADOS because it showed very clearly where my son's deficits were and their relative strength/mildness. It was a useful thing for me to watch.

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#4 of 16 Old 04-13-2012, 11:13 AM - Thread Starter
 
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Thanks mamas!

So we got the diagnosis of "moderate ASD". She couldn't give us many specifics other than that he scored 19/30 on the ADOS. He did do some typical things, like answering the phone, pouring pretend water in a jug and fed me some pretend food (when he was supposed to feed a doll). Other than that he pranced around on his toes and kept laying on top of this squishy foam block they had under the table. When he was given a book to read, he smelled it instead! smile.gif She did say the score may change for the worse or better if/when he becomes verbal.

Anyway, I have mixed feelings. I was expecting mild autism or PPD-NOS so was a bit surprised to hear moderate autism, especially since he was in good spirits and playing the best he can really. The pediatrician was a bit weird, saying that she doesn't believe in ABA (huh?) and that any recoveries are spontaneous or coincidental. She offered no suggestions on "where to go from here", just that we could apply for disability benefits if we make less than 60K (we don't) and that we could get free diapers once he turned 3 through the Easter Seals. Sigh. Out of curiousity, when your dc were diagnosed, were you offered genetics (for Fragile X etc) or an EEG or MRI?


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#5 of 16 Old 04-13-2012, 01:24 PM
 
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Quote:
Originally Posted by blissful_maia View Post

 Out of curiousity, when your dc were diagnosed, were you offered genetics (for Fragile X etc) or an EEG or MRI?
 


We had a 5-month diagnostic process with DS and the ADOS was just one part of that.  The Developmental Ped also ordered and EEG to rule out seizure disorder and blood work to check for metabolic disorders and chromosome disorders, including Fragile X.  At that time, the usual genetics test was a High Resolution Karyotype and DS's results were normal.  A couple of years ago, chromosome microarrays became available and when we had that test done, we found that DS has a microdeletion on Chromosome 19.  His deletion is so rare that the doctors cannot tell us the clinical significance of it. He has not had an MRI, but the doctor would like to do one in the future.

 

My son was originally diagnosed with PDD-NOS, a week after he turned 3 years old.  At age 5 his diagnosis was changed to Autistic Disorder, with features of hyperlexia and dyspraxia.  He is now 8 (in a couple of weeks) and is considered to have moderately autism.  He is verbal, but has difficulties with receptive language and pragmatic language and he has some very obvious social impairments.

 


Lolly
Mom to an amazing little guy, age 9 (Autism, Hyperlexia, Dyspraxia, Albinism, Chromosome Microdeletion)

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#6 of 16 Old 04-13-2012, 03:46 PM
 
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It was suggested to us to test for Fragile X, but we don't have the funds for that, so we didn't do it.

Doesn't believe in ABA? Wow. Ok... we didn't do ANY therapies (except speech) because I taught him all of it on my own. (I'm an aspie. I kind of knew what to do.) That doesn't mean ABA is worthless, though. I'm still kind of floored by that.

 

Find yourself some local ASD support groups. 

What To Do When Your Kid is First Diagnosed is a blog post I wrote. I based it on what I remember dealing with when my oldest was first diagnosed. 


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#7 of 16 Old 04-14-2012, 07:12 AM
 
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Quote:
Originally Posted by blissful_maia View Post

Thanks mamas!
So we got the diagnosis of "moderate ASD". She couldn't give us many specifics other than that he scored 19/30 on the ADOS. He did do some typical things, like answering the phone, pouring pretend water in a jug and fed me some pretend food (when he was supposed to feed a doll). Other than that he pranced around on his toes and kept laying on top of this squishy foam block they had under the table. When he was given a book to read, he smelled it instead! smile.gif She did say the score may change for the worse or better if/when he becomes verbal.
Anyway, I have mixed feelings. I was expecting mild autism or PPD-NOS so was a bit surprised to hear moderate autism, especially since he was in good spirits and playing the best he can really. The pediatrician was a bit weird, saying that she doesn't believe in ABA (huh?) and that any recoveries are spontaneous or coincidental. She offered no suggestions on "where to go from here", just that we could apply for disability benefits if we make less than 60K (we don't) and that we could get free diapers once he turned 3 through the Easter Seals. Sigh. Out of curiousity, when your dc were diagnosed, were you offered genetics (for Fragile X etc) or an EEG or MRI?
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No, we weren't offered genetic testings.

 

Autism Speaks has a couple of "tool kits" for newly diagnosed families that are useful:

 

http://www.autismspeaks.org/family-services/tool-kits/100-day-kit

 

http://www.autismspeaks.org/family-services/tool-kits/asperger-syndrome-and-high-functioning-autism-tool-kit

 

They include information on therapies.

 

I really like the Asperger's Answer Book, too. It's also helpful for HFA. 

http://www.amazon.com/Aspergers-Answer-Book-Questions-Parents/dp/1402208073
 

 

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#8 of 16 Old 04-14-2012, 04:54 PM - Thread Starter
 
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Thanks so much for the links and personal stories!

HarperRose, can you believe she said that? The only logical thing I can think of is that she was trying to lessen the blow of the 3-4 year waiting list for ABA in our province. A developmental pediatrician should read the peer-reviewed studies regarding ABA, no? Sigh. She actually used the words "I don't know what to tell you" when I asked what the next steps were.

Speaking of ABA, we're considering relocating across Canada to a province that funds autism services (60K per child, plus free OT, ST and PT) whereas those are the mostly the full responsibility of the parents here. Is that crazy? To move away from friends, family, stability for what's best for only one of our three children? So many decisions. greensad.gif


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#9 of 16 Old 04-15-2012, 10:35 AM
 
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I wouldn't be opposed to moving for the best interest of my child. That said, my family & I have lived in a city we love with ZERO support from family and even less from "friends" and it sucks. It well and truly SUCKS. We never branched out to find other families like ours until we moved back here. (We spent 20 mos in another state and just moved back to the city we love over the summer.) now that we're back here, we've changed our friends and are connecting with those like us. Connecting with people who have families like ours. It's been a much much better experience for us.

So, my advice to you is this: If you move, be prepared to have nothing at first. No support. No friends. But waste no time in seeking out support from like minded people and similarly affected families. We've been very blessed in that regard. Our previous friends were judgmental and unkind and didn't understand. Moving away kind of forced us to change friends, and it has worked out to our benefit.

I still can't believe the ABA thing... Wow.


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#10 of 16 Old 04-15-2012, 11:10 AM
 
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Quote:
Originally Posted by blissful_maia View Post

Speaking of ABA, we're considering relocating across Canada to a province that funds autism services (60K per child, plus free OT, ST and PT) whereas those are the mostly the full responsibility of the parents here. Is that crazy? To move away from friends, family, stability for what's best for only one of our three children?
 


 

My DD's autism is part of why we live where we do. We had to relocate for my DH's job and were given the choice of 3 cities. I researched and decided what was best for our child on the spectrum, and we came here based on that research. It was the lowest paying/least prestige job of the 3 job. There were no real pluses for our other child, but we don't have any regrets. Our spectrum kiddo is THRIVING.

 

One of my friend's husband just got out of the military, and when they decided where to move and stay, services for their child, who has profound autism were a top concern.

 

None the less, if you are living where you have family support and stability, it's a different deal. I would do a lot of research and visits before deciding. Moving cross country is a massive upheaval for everyone. It's very expensive if you are paying for it yourself. And employement options is something you need to carefully consider.

 

 

 


but everything has pros and cons  shrug.gif

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#11 of 16 Old 04-15-2012, 09:45 PM - Thread Starter
 
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Yes, it's a difficult decision, almost like trading family for money. Money may not buy happiness, but it sure does buy better services for your child with special needs. greensad.gif

There are other factors as well:

My salary would be more (a lot more... about 50K net/yr) and then factor in services for ds' services as well

The job would likely be more personally fulfilling and less stressful than my current job

We would be living in a suburb of a fairly large city (we currently live in a rural area, on several acres with chickens etc) - pros are more activities for older two children, more access to all sorts of resources for pur whole family but a HUGE change from our current life

Changing my girls' school (first and third grades) - something I never, ever wanted to do but they seem excited about the prospect of making new friends etc. smile.gif (My social butterflies, thank goodness for them so I could notice ds' issues early)

Would likely not see my mom more than 1-2 times/yr, my dad we would still see monthly. Would really miss probably 3 or 4 good friends as well


Thanks if you got through my list, and for any input you may have. I guess what I want to know is if you think it's reasonable to make such a crazy and monumental decision just for the sake of starting early and intensive therapy and routine for our son. I don't think I really know yet the full impact that ds' ASD will have on our life and how that may change depending on our decisions now.


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#12 of 16 Old 04-16-2012, 10:34 AM
 
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I don't think moving is unreasonable - but I'm surprised that you are in Ontario.  My kids aren't on the spectrum, so I'm not really familiar with all the services and stuff, but I know people who have moved here from other provinces because of the improved school situation for autistic kids, etc.  Are you sure it's the province and not just your area? 

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#13 of 16 Old 04-16-2012, 11:04 AM
 
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I would contact an advocacy organization in the province you're considering (AB??), and confirm that those resources are accessible and what criteria you need to satisfy in order to access them.  Sometimes what's written and what happens are different things.


Mom to a teenager and a middle schooler.

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#14 of 16 Old 04-16-2012, 11:44 AM - Thread Starter
 
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Jen Muise, it's both the province and our area, unfortunately. Ontario has the absolute worst supports for autism spectrum disorders from what I've heard/read. A wait time of 2-3 years for ABA is common in metropolitan areas and more like 3-4 years for rural/underserviced areas like the one we live in. Absurd when the average age of diagnosis is just about 4... so these kids aren't getting help until they're 7 or 8 unless their parents have 60K+ laying around or go into insane amounts of debt. Not to mention the fact that you need to be "severely autistic" to access it, funding is only until age 6, and you commonly lose it if your child improves too much or not enough. So much for "early intervention", huh?

joensally, dh and I were concerned about this too (sounded too good to be true!), so I did contact the regional autism societies in the Edmonton and Calgary areas and was assured that the only possible obstacle to funding is needing to wait to be re-diagnosed through the local children's hospital if FSCD wouldn't accept our Ontario paed's documentation. Once you have diagnosis in hand, funding is immediate for a full-time program and until the child turns 18 as long as they remain ASD (severity doesn't matter). The centers I called didn't have wait times for enrollment either.

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#15 of 16 Old 04-16-2012, 01:27 PM
 
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Hmm, that hasn't been the experience of the people I know here in Ottawa.  I have one friend with a 7yo autistic daughter (who might fit into the severely autistic category) who was diagnosed at 1.5 y and has been in therapy provided by CHEO and the school board pretty much ever since.  I know they pay for some things (SLPs, OTs etc) but they definately don't have 60k+ lying around to spend, and I don't get the idea they are in debt.  My hairdresser just moved here from BC to access better programming.  Another friend of mine has an aspie kid, and they have been pleased with the school system here since he's been diagnosed, altho he's more quirky than seriously challenged by his differences.   Maybe we're just lucky here, idk, or maybe my friends aren't the norm. 

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#16 of 16 Old 04-17-2012, 03:32 PM - Thread Starter
 
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Yes, your friends definitely aren't the norm, and are extremely fortunate to have accessed the necessary services in a timely manner! It also depends what you define therapy as. I'm talking about the 30-40 hours of one-on-one intensive behavioral intervention per week that is recommended for young children with an ASD. I have heard that the public school system is very helpful and accommodating of special needs, but we're still a few years out from that.


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