Showing posts with label diagnosis. Show all posts
Showing posts with label diagnosis. Show all posts

January 19, 2015

Diagnosis Day



Diagnosis Day


You sat down, the doctor gave the news
In some ways it's such a relief
But inside there's still a part of you
That wants to curl up in grief



"I'm still your baby," she says.
"I'm still the same one you love.
I'm still the same child you hold 
Close to your heart so snug."



Don't worry about anything yesterday
I know this wasn't by choice
Just take each moment day by day
And in small victories rejoice


~Kelly Bron, January 2015

June 23, 2014

How I Knew Something Wasn't Right

I pretty much started this blog after the Little Man got his autism diagnosis. Not to say everything was peachy before then, but I wasn't chronicling our experience at the time. Every now and then people ask me, "what were the signs? How did you know?"

Honestly, I didn't know. We knew something was very different about our son, but not what exactly. Actually, because doctors were giving us a hard time, we thought there might be something wrong with us!

First off, I speak from a position of great privilege - I have a degree in Linguistics. Because of my degree, I studied language acquisition and childhood development. I studied the brain and learning disabilities. I then volunteered with Deaf children and learned speech therapy techniques. So I had some experience working with non-verbal children and what "normal" development should be like.

From the beginning, my son was not "normal." As a newborn, he was very alert, like a wise old soul. This was when he was quiet, but otherwise he was screaming. When quiet, he stared at lights and didn't look at us much. We called his name and he did not respond. We actually thought he may be deaf, so we had his hearing tested. It was fine.

His head grew very large, very quickly (a sign of autism for some), so we had that monitored. He seemed to space out now and then, so we had him tested for epilepsy. Nothing there.
He made a few noises, but didn't babble. He drooled a lot and flapped when excited.

For me though, the biggest red flag was the lack of speech. Because of what I learned about speech therapy, I was using elicitation techniques with him from birth. He never imitated us. We did baby sign, which he responded to pretty well. We could tell he understood us, but wasn't reciprocating.

He sat quietly and spun the wheels of his trains. He got down on the floor to look at the wheels move. He flicked his fingers in front of his eyes. When we took him to the park, all he did was sit in the sand and run the sand through his fingers and squeal loudly. We couldn't put him on the slide. If I stuck him in the swing, he sat passively, as if waiting for it to be over.

Aside from not speaking, he couldn't eat food. He was constantly putting stuff in his mouth, but not food. He would choke and gag on the baby food. Or he would shove a whole bunch of something in his mouth and hold it there. (That's more SPD and Apraxia than autism)

So I took him to a bunch of doctors with these issues and was spoken to like I was crazy, like I was doing something wrong to cause these things. What parent doesn't want their kid to eat? All he would eat were crunchy things that would melt in his mouth so he could swallow them whole without chewing.

It wasn't til he was over two and a half that he got diagnosed as autistic. It wasn't until he was over three that we got the Apraxia diagnosis. Not for lack of trying!

I wish doctors understood the power of a mother's intuition. No one wants there to be something wrong with their kid. We all want our kid's lives to be easy.  I wish simple things did not have to be a struggle for him. That doesn't mean I don't accept him as he is, where he is right now. If his path could be easier, I would welcome it. I think any parent can relate to that. I wish doctors did also. When a parent comes with concerns, they need to be taken seriously. I know my child best. You know yours. If you are concerned about your child, keep fighting, keep searching until someone hears you. 

March 17, 2014

Canadian Healthcare

I thought I'd give a little overview of our healthcare system and experience, since many of my readers are not Canadian. Also, even if you are Canadian, there are a lot of differences between provinces.
While we do have Health Canada and there are certain standards all provinces as supposed to comply with, healthcare falls under provincial jurisdiction. In other words, each province pretty much does their own thing and if you were to compare the services between them, it might look like we're all in different countries.

For example, when people quote our maternity and parental leave benefits, they often quote Quebec's allowance, which is the highest in Canada. While QC actually has a law saying a woman is not allowed to return to work before six weeks post-partum without a doctor's note, in Ontario, you can get up and head back to work right after labour if you want to.

On the downside, our seasonal flu shots are only (technically) free to those considered part of the vulnerable population (under 23 months or 65 and older or immunocompromised, or in contact with any of those people). I say technically because while I've always just walked in and gotten it when I wanted it, no questions asked, it's not always that way - it seems to depend on the nurse's mood that day. If they wanted to charge me (and they could!) it would also not be covered by my private insurance, so if I didn't have the money, I would have a problem.

So if you want to get an idea of Canadian healthcare, you need to ask a person from each province and territory to go over the good, bad and ugly bits. Ask anyone who has lived in more than one province and how confusing it can be. Or take for instance, the fact that PEI doesn't have even ONE abortion provider. That's not right.

I'm going to concentrate on QC, because that's where I live, so it's what I know best.

Basic healthcare in QC is free. So if I want to see a doctor every day of the week for any reason whatsoever, I can walk into any clinic or hospital, show my card and see one.
Then the system forces every single employer to provide a private insurance policy for prescription medications and other sundry things like life insurance. The plans are all pretty much the same, and cost somewhere around $80 a month at most to cover a family. Some workplaces cover that cost, making it free (yay!) but I don't think that's too common. The plan usually covers 80% of the cost of your prescription medications and things like massage, OT, speech therapy, naturopathy, acupuncture, psychological counseling and those sorts of services. They also cover eye exams and dental appointments. You are allowed to be covered by more than one plan, so for example, my husband and I are both employed, so we both have our own policies. We claim our 80% on our own first, then the 20% that is left is covered by the spouses' plan, making everything FREE! The Little Man is covered under both of us, so we claim on both our plans and all his stuff is free. Dental care for children is free up until a certain age (have to look it up).

So starting from the beginning of Little Man's life, my pregnancy was followed part public and part private. Blood work and check ups were all public. Scans and specialists were private. It didn't have to be that way, but it's what I chose for myself. I preferred the specialists at the private clinics.
I gave birth at a hospital (public) and my delivery and two-night stay in a private room was free. After being sent home, about five days later a nurse came to check on us at home to make sure we were ok.

All his vaccinations were free. Before vaccinations, a nurse does a quick check up of mom and baby. They check weight, ask about how you're coping, answer any concerns you may have.

Fast forward to when things started to get complicated - I brought up my suspicions that something was wrong with the Little Man's pediatrician. I switched doctors three times because they were blaming me for his issues initially and not listening to me. He was sent for a hearing test (private, so $$), and an allergy test (public, so free). Eventually someone listened to me and we were referred to OT. OT was free through the local children's hospital. There we also had an assessment by a physiotherapist and a psychologist. I wasn't satisfied with just that, so I took him to a private psychologist, who finally assessed him for autism. If I hadn't gone private for that, we'd still be waiting for a diagnosis. Last I heard, the waiting list for public-system autism diagnosis is 3 years long. Ain't nobody got time for that.
I should note that even though insurance covers us, it covers to a max of $500 per service annually. So that's only $500 of psychological testing/services, $500 of (private) OT or speech therapy etc. If you know anything about the hourly rates of these things, you know that doesn't cover much. And even if you double our maxes to $1000, that still may not cover everything you need.

Obviously, when it comes to certain things, it's because we were privileged enough to afford private testing that we got our services quickly. That is not the case for everyone in this province though and that's a big problem.

After finally having a diagnosis in hand, then there's the waiting list for public services. QC provides free ABA therapy for any autistic child for 20 hours a week, up until the age of 6. Or at least that's what they say they provide or would like to provide. Does that actually happen? Probably not as much as one would expect. Also, ABA wasn't exactly on our top choices of things we wanted to subject our child to, but we put him on the waiting list in our area anyway. We received a letter over a year later telling us we would probably get services in the next two years. So, he would be six by then, which would have been useless anyway.

However, things can also be different by borough, because the city is divided up into boroughs and each borough has it's own health services. When we moved to a different borough, our file transferred and suddenly the waiting list became shorter. It also offered more services. Honestly, I'm happy we moved to a richer borough because the differences are so stark.

Now we get a special educator who comes to the house to help us with the Little Man, about an hour every three weeks or so. She pretty much just acts as an assistant to us. She gives us pointers on things, and she makes our picto boards and social story books for us. She has really helped us be better parents, by giving us different strategies. Pretty much whatever we ask her to do, she does the grunt work for us. We just send her what words/pics we want and she does all the printing, plastification and velcro work. This might not sound like much, but it helps us a lot.

One other detail, with official diagnosis, you are assigned a social worker. Well, kinda. You see a social worker, then you're on a list for a dedicated one. We had one, but she went on mat leave and we moved, so we no longer have one. Kinda annoying. What comes out of the meeting with the social worker is down to luck - if they're not knowledgeable about grants and services specific to autism (and a lot aren't, or not in English, since French is predominant here) you will miss out on certain things. Again, the experiences of different parents I have spoken to have been so vastly different (and that's within the same city!), it's absolutely ridiculous. However, I can't really complain about my experience. We receive two subsidies for the Little Man and that is through the work of the social worker helping us fill out applications. From speaking with other parents, social workers here spend an awful amount of time trying to get us to talk about our marriage/relationship to make sure everyone is ok, but I really don't care to speak to a social worker about those things. If I need relationship help, I'll see a psychologist. I use our social worker solely for access to services/funding. However, I do see the value in family support and counseling, so if we didn't have money for a psychologist, at least some part of mental health would be looked after.
And this is an important point, because I know if I were depressed or overwhelmed, I would be taken care of promptly and for free.

So there is what I had hoped would be a short overview of our experience with our public health system. If you have questions or want more detail, feel free to ask! 

January 22, 2014

Autism vs Asperger's

If you hang around here a lot, you'll know I refer to myself as Autistic (with a capital A) and not Asperger's. There are a couple of reason's for this:

One, despite how I may appear and how much I can relate to Aspies, my diagnosis is autistic.

Two, the Asperger's diagnosis got swallowed up under ASD and I think we all might as well get used to just saying ASD.

Finally, there are some Aspie's with superiority complexes and I'm not interested in being in their club.

Yes, I do frequent a lot of Asperger's groups/communities, mostly because I "get" them and I think they "get" me. In fact, I've never really felt quite as home anywhere else and they are the closest to it. But I'm technically not an Aspie.

I jokingly refer to myself as Aspie at times for simplification, but that's about it.



If you have a diagnosis of Asperger's, are you hanging onto the title?

May 11, 2012

A Second Opinion

I don't know if it's other people's fears or denial, but we've been getting one common question over and over: Don't you want a second opinion?


No, we do not want or need a second opinion. If we had gotten the results and they came back that everything was fine, I would have fired the psychologist because it's glaringly OBVIOUS, at least to me, that my kid is not alright. I have noticed from the beginning (even in utero) he is not like others, and not just in a "unique and special snowflake" way.

It is possible that there is something else at play (or a combo) because of our messed up genes, but what that is doesn't actually matter at the moment. The fact is, in order to get him the specialized help he needs, we need a diagnosis of *something*. In order to get the tax credits/exemptions we so desperately need to pay for the help he needs, we need a diagnosis of *something*. Normal speech therapy could only take him so far (and she did an amazing job, she is great, we loved her) but to assemble a specialized team of OTs, speech and behaviour therapists that he needs to work with him one-and-one - well, it's much easier with a diagnosis.

The fact is, nothing is set in stone. The diagnosis can change, *he* can change. But right now, and all that really matters is right now, he needs therapy.

May 08, 2012

Our Journey Through the Spectrum


So it only took about 10 months, but I finally got confirmed what I always knew: The Little Man was diagnosed with ASD today. Part of me feels relieved and validated. The other part of me feels completely exhausted.

I've got a crazy list of things to do now: try *again* to get a social worker so I can get access to English resources in the area (if any), get him started in intense ABA therapy, contact the OT at the hospital, call back the speech therapist at the clinic, fill out all the necessary forms for tax credits/exemptions, start shitting money out my ass so we can pay for all this (not public services, but a lot of the clinics seem to be out in DDO, which means a whole lot of driving)...it feels like a lot right now. Luckily, I took the evening off work.

And for those who understand and like details, we did the ADOS, but not the ADI. We will re-asses in about three years. In his case, it's still too early to tell if he's got Asperger's (unlikely because of his lack of language skills) or PDD(NOS) since he's so "weird." (Not a surprise to me that it's difficult to fit any child of mine into a perfect box. I take some pride in that! LOL)

The plus side of a diagnosis: we get to skip all the lines at Disney if we ever go.

All I ask from my friends is understanding - we may take longer to do things. We may not always attend events or not for long. I may opt to stay home with him knowing that my presence is needed if he's had an over-stimulating day. This is nothing new, I've always arranged my life around him, but now maybe people will understand he's not like other kids and I'm not paranoid or coddling or spoiling him. We do things our way and every decision I make is about him. This is all I know. I've only ever mothered an ASD child. And based on hugs and kisses, I think I know what I'm doing.