Update on Claire

[Tiff]

We're still waiting for our ADOS test, although its pretty much agreed between our GP, SLP, OT and RT that she's somewhere on the spectrum.

We're going to start speech therapy and occupational therapy privately (husband's benefits cover a portion) to try and help move things along. Thankfully our county is amazing with doing stuff for us while we're waiting... they've been putting on lots of workshops/classes to help us as parents with kiddos who have a few issues with stuff.

We've started working with Visual Schedules with Claire, its been massive in helping her! We have one where you can pull off the action and put it in the "all done" pocket (ex - after she brushes her hair, she puts the "brush hair" visual schedule into the all done pocket)... she loves it! Gives her a sense of accomplishment, iykwim?

We're also starting the More Than Words program put on by the Hanen Center to better understand how to communicate with kiddos who have Autism. I'm looking forward to it.

Its been so amazing to be around other parents who's kiddos have some form of ASD and listening to them and their stories and FINALLY feel like I can relate with my kiddo. Does that sound bad????

 

[JASMAK]

I did the More than Words course....was great! The assessments take a long time, but, you are right...the label means (and changes) nothing....it's the help that matters.

 

[Tiff]

Its actually refreshing to be around people who get it... if that makes sense?

Just tonight at our workshop, I was talking with a RT, SLP and OT about Claire and how Claire communicates. If she trips/falls or is hungry or anything really... she'll ask me if I'M feeling that way.

So if she falls, she'll ask me if I'm okay. Or if she's hungry she'll ask me if I'm hungry, so on and so forth. They explained to me tonight that her doing that is very "typical" of children who have Autism, as they have a hard time separating "you" from "I". They also showed me ways that I can help Claire understand that when it comes to her she "should" refer to herself as "I" as opposed to "you".

Not sure if that makes sense?

But it was awesome to be around people who understood!!!! None of my friends kids do that... if they're hungry they say they're hungry. They don't ask their parents if THEY are hungry, iykwim? (as an example)

 

[JASMAK]

Yes it does make sense. Makena mixes those up all the time! LOL

 

[sun]

Great to hear you guys are doing well. I find that a visual schedule makes a huge difference too.

And I also took the Hanen course and thought it was excellent!

 

[Midnight_Fairy]

Hi hun, my son had the ADOS tests if you have any questions or wish to know his results just ask. Its a long journey of acceptance and finding your feet but having people around you that understand are priceless x

 

[JASMAK]

I was thinking of you this morning as I listened to my daughter try to get her jumbled words straight of I's You's, etc....

 

[Tiff]

Yeah she was doing that so much yesterday and today. She does have a bit of echoalia, where if I ask her if she wants milk, she repeat what I say etc. But my hubby thinks that's just natural child progression.

Its SO hard when its our first and we don't really have anything to compare it to.

 

[Midnight_Fairy]

My son has echolalia, it gets worse at time and then goes. I have got used to it now x

 

[JASMAK]

Makena does the echolalia thing too, which is funny because she will say a commercial word-for-word, and at the end, she will even say something like 'watch your toys come to life, made by Mattel" or whatever it is. It is hard to know..and I do have an older one who does not have autism...I still don't know!!! Is this just her personality, or her autism??? Sometimes I think a bit of both. But, sometimes, I just have to laugh, because it is better than crying!!!

 

[Tiff]

Yeah I know what you mean!

Its hard too as we have friends/family who all tell me that she isn't Autistic. But on the other hand we have a Speech Path, an Occupational Therapist, a Resource Teacher and our General Practitioner who all think something is "up" with her.

Our one friend works with very low-functioning autistic children and is all 'well she's NOT autistic.. that's ridiculous". But she's only spent a half hour with her (one visit) in the past year. Whereas the RTs that we have have spent 2 hours a week with her for the past 10 months.

How did you guys cope/deal with this?

 

[Midnight_Fairy]

I get this alot.

Someone said to me "but he looks normal"

Well of course he does lol, he is normal its daily life that DISables him, he is not disabled, he is a person with additional needs in life.


Its so hard, people still do not understand. I had soo many people tell me he does not have ASD but I dont listen anymore or I explain its not obvious ALL the time xx

 

[JASMAK]

I get that aaaaallllll the time. Drives me crazy, tbh. I mean, I had one guy, who was an old high school friend, tell me that my daughter couldnt be diagnosed with ASD as she wasnt 3 yet. Ummmm...well, tell that to the 4 SLP, 2 OTs, 2 paedeitricians, 1 infant development worker, and the childrens neuropsychologist.....geez! Or, well, you cant really tell....is the other one I get all the time.... Grrrrr....

 

[Tiff]

Good to know to just expect it and move on. The hardest is SIL and our friend, who both have experience working with Autistic kids. Oh well.

It had been awhile since we had taken the city transit, and we did yesterday. The last time we were on the bus it was pretty cold out and Claire put her fingers on the window then got upset because her hands were cold.

Cue yesterday, where its warm as warm can be (20c in the sun!) and immediately when we sat down she puts her fingers on the glass then complains to me that her hands were cold. I felt them (thinking the window might've been cold) but her hands were really warm!

I tried to ask her why she said that her hands were cold when they obviously were not but she couldn't give me a reason, other than the last time she was on the bus her hands were cold. It was really a strange conversation.

Found this neat article, I've been reading on how different Autism is in girls rather than boys. Makes quite a bit of sense, actually!

 

[Tiff]

Another update:

So it looks like the wait for our ADOS test is 10 months. She needs speech and occupational therapy NOW. So we've decided to pay out of pocket (with some of my husband's benefits to help) for a psychologist who can get a provisional diagnosis for Claire so we can get funding for her speech and OT needs.

Unless we get on a cancellation list she won't be tested until around late fall-early winter of this year.

 

[Midnight_Fairy]

Its the same in UK hun, we waited 8mths and then it was rubbish so we went private too xx

 

[Tiff]

Moving right along!

We have an appointment with the psychologist on May 19th. He said he'd need at least 2 sessions. The first to observe her and have us answer questions, the 2nd to administer the CARS test (Children's Autism Rating Score). He said depending on how she scores on the CARS test we may not even need to do the ADOS.

I told him my misgivings about how Claire doesn't seem Autistic to me. Even though our SLP, OT and RT's all think she places somewhere. He did call it a spectrum for a reason, which I do know and have said before. Anyhoo! We shall see.

I'm on pins and needles. On one hand, getting a provisional diagnosis (or straight diagnosis) would help immensely, on the other still being able to say that since she hasn't been fully evaluated it could be nothing has really kept me together these past few months. Which makes me feel awful. There's nothing wrong with Autism. In fact, I sit here and thank whatever is out there that if we do have to be "challenged" with something, I'm so grateful its Autism and not something like cancer or a rare disease where she could die.

I hope I haven't offended anyone. Its been very rough these past few weeks. How did you all react and process when your kiddos were diagnosed?

 

[Tiff]

We've now had 2 appointments with the psychologist.

The first one she was having a really good day. He saw some behaviours but she wasn't being OTT like she normally is when she's having a meltdown. On our 2nd appointment he very much saw what she's like when she's overwhemled/sensory overload.

The Psychologist is definitely thinking Autism. As it stands, now we find out "where" on the Spectrum she is. I'm a gamut of emotions right now, the worst being from my family who told me that I should be "discreet" about this and "not tell people" because it might "hurt Claire".

I honestly don't have the energy to write it all out again (I have it all in my journal) but yeah. More just relieved right now that we can have some help and whatnot. Our Psychologist is going to put us in touch with Autism Ontario who will help kick start our ball rolling.