We Used to Fear He Would Be Non-Verbal

It wasn't until last year that the Little Man started speaking sentences, and even then, only we could understand him (and only sometimes). That's not so much an autism thing, but an apraxia thing. I mention it also because not a lot of people, including professionals, know about Childhood Apraxia of Speech (CAS). It's a motor-planning speech disorder. Therapy helps, but it will never go away completely. It means, for the most part, he understands very well, but his body is not reliable when trying to express what is in his brain. The whole body type of this condition is called dyspraxia, which he also shows symptoms of. In fact, I often believe his apraxia/dyspraxia is more challenging to him than autism is. It is quite a double-whammy of communication challenges.

Anyhow, we were at some point very concerned and thought maybe he would never be able to make himself understood verbally. With lots of speech therapy, he went through a huge leap in development and now speaks TONS. I have yet to capture one of his amazing monologues on video (he tends to get shy around cameras) but I can try to capture his more verbal moments by writing them out from memory.

Here are two recent events where he got really excited and the words just came flowing out.


I took him with me to the garage to get the tires changed:
"I love this place! We need these tires! We need these...things! (Those are rims) We need those rims! (Those are too big for our car). Oh we need these ones. What are those? (Those are windshield wipers) Look at them! They cost $150. (No, those are 15" blades) Oh my GOD! There are magazines here with monster trucks! I love monster trucks!"

I took him to his great-great aunt's house for her birthday:
"I love your place. I love your door, there's a flower on it. Oh look, you have a table. She is in this house again (This is Aunties' house. She lives here). It's your birthday. I made a blueberry cake for you. You need to eat it now! Eat it, eat it! You want to share with me!"

LOL. This kid cracks me up and I enjoy every moment. Believe me, after being silent for so long, we never tell him to stop talking. 

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. 

A Difference of Parties

In the last month, the Little Man and I attended two parties - which is a pretty big deal since I don't usually go out much. While both were family-friendly and had children in attendance, they were very different.
I have nothing against these hosts or guests, they were just very different atmospheres for different reasons.

One party, with the exception of one other child, was all NTs (as far as I know). The children's ages ranged from 10 months or so to about 6 years. At first other kids interacted with him. They would ask him questions, but he did not respond quickly enough. By the time he answered the first one, they were already asking something else. He just couldn't keep up. They reacted by simply walking away. By the time he would go up to them to try to interact, he was ignored. Even I, just observing, was pretty shocked by how quickly it all happened. He had, quite literally, only one chance to get it right and didn't manage. He shrugged his shoulders and went to play on his own. Other kids took toys out of his hands or told him he wasn't allowed to touch certain things.

The other party was more autistic friendly. The host's son is autistic, so he understands and made it inviting. There was a chill out/quiet space. The son was in attendance, as was his (also autistic) friend. There were other younger children who may or may not have also been autistic.

The big difference here is that when my son went to talk to people, they waited patiently for him to express himself. If they didn't understand (which happens often because of his apraxia), they asked him to repeat and waited. They made sure they understood what he was trying to say and answered. He too, waited for them to respond. All the kids shared toys and took turns. My son did not end up shrugging his shoulders and walking off. He did try to bolt at one point, but that's when I knew it was time to get going!

The difference was like night and day.

So while both were just short trips to parties, it makes me wonder about inclusion and the bigger world out there. I know kids are kids, but I'm surprised at how few chances one gets to "get it right" socially. And it scares me for the Little Man. I don't want to see him shrugging and walking off, because that doesn't help anyone or teach anyone anything. He'll just not understand why he doesn't fit in and kids will just ostracize him because he doesn't act socially perfect. I know at some point he will find his tribe of understanding people, but it's tough in the meantime.

At the moment, he's protected by the bubble that is his autism school, but I can't keep him in a bubble forever. Anyway, he is still young and has much to learn. It will be ok for now and I have to hope for the best for the future. 

I Get To Keep My Baby A Bit Longer

This post is probably the most amazing post I've read by an autism mama in a long time. (Omg, go over and give her some love, she just had a miscarriage :( )

Jeanie really expresses very well a lot of my experience with my Little Man - the tantrums over nap time. And once you get him down for a nap, it's so hard to get him up! lol

My son has small vocal cords because of his apraxia/dyspraxia and it can lead to problems later, but at the moment, I have to say, like Jeanie, I like his little voice. We just have a lot in common.

And like her, I also sometimes appreciate the fact he acts younger and I get to hold on to my baby for just a little longer.

Intensive Speech Therapy

The Little Man started specialized speech therapy for his apraxia. We're happy to be working with the best of the best - she's an expert in motor-planning speech issues - but it is really intense.

She works him really hard and he has been a real trooper keeping up with it. It's a lot for him - he looks at us periodically for support and we're both at his side cheering him on. He accepts her touching his face and manipulating his mouth to get the right positions and pronunciation. That's a lot for a three year old, especially one with sensory issues. He fell asleep in the car on the way home, poor thing.

However, he is eager to learn. We've been doing his exercises at home and he seems to feel it's a game. He's already sounding more clear. I am really proud of this little guy.

Delivering the Diagnosis News to Daycare

The Little Man has been in full time daycare for almost 6 months now, but even though we had the autism diagnosis before then, we chose not to disclose that info to our daycare educator. It was a choice we didn't take lightly and we decided it was better that she wasn't biased. He is easy-going enough and we figured she would eventually figure it out for herself that he was a little different.

Well, it didn't take long for her to notice his peculiarities, but she was flexible enough to work with him and not against him. She figured out quickly what kind of discipline works and what doesn't, and she is super patient. Sometimes, not knowing you are dealing with a special need's child produces far more creative and efficient results than knowing and giving up. I mean no disrespect when I speak of people giving up - but the fact is, a lot of people (not the parents usually, but others) give up trying to work with a special need's child and don't set the bar very high because they think the child doesn't have potential. If you go in with the attitude that every child has equal potential, you will usually try harder to help each child achieve their best. 

That feeling you get when you hear the news the very first time.

Last night, I made an appointment with her to chat about the Little Man and finally come clean about his diagnoses. My only regret about this conversation was the way I delivered the news. It doesn't faze me any more to say my child is autistic and apraxic, but I forgot about the feeling you get when you hear the news for the very first time. She cares about him deeply and she got tears in her eyes. I told her a therapist would probably be coming into her home to help him and she said she would do anything to help him. We spoke about the best time of day for him and the number of hours needed. We totally agreed and I am confident despite having only worked with him for 6 months, she knows him very well and loves him like her own. We know we totally lucked out with this daycare worker. She truly is a blessing to our family.

Geez, Apraxia AND ASD?

We finally finished the pre-school speech therapy evaluation today. Of course, she still has to go through her notes and write the report, but it looks like the Little Man has Childhood Apraxia of Speech (I just say apraxia, cos I'm lazy like that. Or maybe apraxic myself. Ha ha.) Now, he's too young for her to pin that diagnosis on him, so all it will say is "motor planning speech disorder" or something like that, with recommendations. She recommends DAILY speech therapy.

All I can think about right now is, how do we accomplish that without either of us quitting our jobs? The only thing I can come up with on my own is to hire a driver to take him from daycare, to his appointments and back. Anyone else have any ideas? Because I'm at a loss.

Not that it would hurt, but we can't just go with any speech therapist, we need to work with one who specializes in motor speech disorders. I think I'll wait for the report before I start letting my head explode though.

And I realize I should explain this in lay terms to those who never studied linguistics: apraxia means his muscles work in his mouth. It means his brain has words in it, but when he tries to use his mouth to produce a word, the signals in his brain become all uncoordinated and his muscles don't move in the correct way to make a correct utterance. So basically, he is unable to say everything he wants to say that is in his head. Learning to write/type will probably help him express himself.

The other overwhelming thing to me is to think, gee, he's both ASD AND apraxic. Like, holy hell, there is no God! Seriously, who would do that to someone? Especially a kid! Argh, I just need a few moments of "why him? Why me? Poor him! Poor me!" and then I'll have to let it go or it will depress me. There are many days I believe he is more resilient and determined than I am.

But at the same time, I can pat myself on the back for my instincts and my fight. I've said it many times here I believed he had either apraxia or dysarthria (see, my degree was not wasted!) and I've managed to keep searching for answers. A mama knows her child.

DisAbility - There Must Be An App For That

The Little Man got approved for the Disability Tax Credit, much to both my surprise and joy. He qualifies until 2027. This also means we can open a Registered Disability Savings Plan. We're also allowed to claim as of 2010, so we'd have to resubmit our taxes.

Still haven't heard from QC (not surprised) to see if we are entitled to the Disability Supplement. It would be weird if Canada approved and QC did not, but weirder things have been known to happen. Anyway, it should help because therapy is stupid expensive. It's just weird that the CLSC didn't deem him disabled enough for free services, but the government does. Everyone is reading the SAME report! But whatever. I can't complain. Just have to keep truckin'.

Anyway, I got a 3rd call from an "autism company" - for lack of a better term - these people who like trying to make money off of worried/stressed out/desperate parents. They create these special "programs" off the top of their heads and then try to tell you they're the best. My fault for the initial inquiry I made, but now she keeps calling me. If I wanted her services, I would have called back, no? She was actually still in the running until this last call where she clarified that a speech therapist does NOT in fact work with the child, an "interventionist" does. This interventionist of hers has a degree in Social Science. She does not have a degree in Speech Language Pathology. I was told this was an advantage because it "saves you money!" No, it's not. I explained that I'm happy to save money by buying cheap socks, but speech therapy is not something I want to skimp on. Really lady? And what the fuck does a social science major know about autism?
Next!

I'm like 99% sure he's got apraxia. I got an iPad and downloaded like, 3 million free "autism apps" and he's having fun with them. Visual focus is not an issue for him, but active listening can be. Although, I should compare him with neurotypical 3 year olds for that; he's probably not out of the ordinary. He understands everything. It really only seems to be a production issue. I'm gonna look and see if there's an app for that! LOL

He's a week away from his 3rd birthday, which blows my mind. Time flies! It feels like just yesterday his little bald head lay next to me in bed in a puddle of my milk.
He's so lovely. He's like, magical or something. I can't explain it. He just speaks to my soul.