My Ausome Jojobee!

November 6, 2016| Jason Michael Reynolds|12 Minutes
November 6, 2016|By Jason Michael Reynolds|12 Minutes

My Ausome Jojobee!

It’s my little Jojobee’s 3rd birthday.

Last year we enrolled Jonah at the local Birth to Three child development center at the recommendation of our pediatrician.

The reason for the referral was because Jonah had not started speaking yet and he was behind developmentally.

Jonny (my NT 8-year-old) went through the whole program so we knew the routine pretty well and we know the benefits of it. Jonny had a speech therapist, an occupational therapist and a physical therapist on top of the twice-weekly playgroup with other special needs kids and specialists.

After his initial [awful] Birth to 3 evaluation (Jonah had not napped, had barely eaten anything, was stuck in a tiny room with toys he wasn’t interested in with me and 3 strangers trying to play with him for 45 minutes), Jonah started off with a speech therapist and they also (of course) recommended a behavioral specialist for my forever wailing, fit-throwing 2-year-old.

A few weeks in to his sessions, his behavioral specialist pointed out a few things to us she had observed.

    • Jonah does not point to things he wants and will not follow a point of others. (ie. “Look up at the airplane, Jonah!”). He will not point to objects to relate them to us, like showing us something exciting he sees.
    • Jonah very rarely plays “pretend” with his toys or rarely uses them as representation of something else. (ie, driving cars, playing “house,” or going “shopping” like he does with Daddy). Instead, he prefers to play with things like sensory bins filled with beans, sand, rice, or water. He loves stacking blocks, sometimes up to 15 blocks tall or playing with crayons, chalk, paint, or markers, always creating very colorful abstract creations.
    • Jonah is almost completely non-verbal. That isn’t to say he doesn’t communicate, he just does not communicate with words. He knows one word very well  — “done,” but he only uses it in context to being strapped in a chair when he is unable to get out himself. He doesn’t say “Mama, or Da-da” to refer to us, but he uses a slew of non-verbal cues to let us know what he wants or needs.He will lead us by the hand to something he wants, like the door for “outside” or put our hand on his diaper if he wants changed. He will open the fridge and try to pick up the milk to let us know he’s thirsty.
    • Jonah is particular about his surroundings. If he is putting his alphabet blocks back in their box, they must all face with the color letter “up.” He will turn each one until they all have the color side up. If anyone else turns them a different way, he will turn it back.He likes to line things up in a nice, neat row. He will line anything up if they are similar objects (paint bottles, action figures, matchbox cars). He gets upset if they are moved and wants them moved back.
    • He likes to repeat actions. A lot. Jonah will clean up his toys, just so he can dump them out again. He will fill a cup up with water from a kiddie pool just to dump it out, and do the same thing for an hour…in the pouring rain… He will run laps, or back and forth in a room for close to an hour.
    • Jonah has an unusually high pain tolerance. Jonah will be walking around with 2 skinned knees (blood dripping down his leg) and not bat an eye at it. He will pinch his hand in a folding hall closet door and brush it off. He is one tough cookie

All of those things I was well aware of. Other people had brought up those things saying it was an indicator of “this or that.”

The only thing that concerned me at all was that he developed his speech.

So when his “behavioral specialist” told me that she suspected that Jonah was autistic, I brushed it off.

We had many medical possibilities thrown at us with Jonny  from “noonan’s syndrome” to “velocardiofacial syndrome.” Which, of course, Jonny has neither of those, so Jonah with autism? Meh.

But, the more I researched children with Autistic Spectrum Disorder (ASD) the more I realized that there may be more to it.

I really started to become concerned.

The clearest marker of ASD in children is developmental regression

Jonah had developed a few words early on (“hi,” dadada,” even “mamama”), but had quit saying those few phrases we knew he had mastered. He had previously pointed to the various parts of my face when I asked him (“Daddy’s eyes,” Daddy’s nose,” etc) but had quit doing that.

Seemingly mundane stimuli like me repeating a song, or jingle set him off…again, a sign of autism (according to the interwebs).

I contacted the local Autism center (with the referral of his Pediatrician) to have him officially evaluated. I was told there is a 4-6 MONTH waiting period just to be screened. This was last May.

I began looking on youtube for autistic 2-year-old behavior to compare and realized that some of those kids had developed verbally farther than Jonah.

I then began looking for cases where the autism only got worse as they got older, fearing that would be us. I began getting despondent and full of fear… and it made me feel sad…

…and then guilty…and then sad again for comparing my child to a 2-year-old on the internet…

I realized that I was bringing myself down, bringing those around me down, and unfairly putting Jonah into a categorical “box.” Nothing had changed in Jonah. Only my attitude. And it sucked.

So I apologized to Mama for bringing her down with worry and grief and promised to quit looking up worst-case scenarios online. As I heard once as a kid, “Worry is a misuse of the imagination.”

SO WHAT NOW?

We kept working with Jonah at the birth to three center, where he has made leaps and bounds of progress, especially in the last 2 months.

It is still a challenge sometimes to calm him down when things don’t go exactly how he wants them to go (as with any other kid), but he is responding better to correction.

His speech therapy has taught him how to sign “more,” “please,” “go” and other non-verbal things. Jonah is verbalizing while he plays. He is mimicking things he sees and experiences in his playing (pretending his cars are going down a slide, even voicing “ready, set… GOOO!” in his own way.

He is learning to adapt to others around him while he plays and we are learning to take turns and share (as any toddler learns).

We have a new cat and Jonah LOVES playing with him. Jonah loves playing and interacting with Jonny, and with me and Mama.

He laughs at himself. He thinks its hilarious when he hides behind our back waiting for us to find him.

He LOVES his brother.

DID I MENTION HE IS STARTING PRESCHOOL?

Yep. One thing about the Birth to 3 center is that once the child turns 3, they officially graduate from the program and are off to preschool. And since Jonah is turning 3, he starts preschool on Monday.

I really hope all the things he has been working on are not all completely undone. Preschool is scary for any 3-year-old away from Mom and Dad and with all new strangers. I sort-of know how Jonah will respond without me there or anyone else he knows there (how any toddler would respond), but I’m really hoping that it won’t take too long for him to come around.

Huh boy.

So with everything that is going on, we are still on a waiting list at the Autism center. We don’t know for sure if Jonah is on the Autism Spectrum, but in the end… it doesn’t matter. A diagnosis may pay for some specialists or programs which will prepare him for life, which of course, I am all for.

But what I have come to realize in all of this is that, autistic or not, Jonah has a unique set of gifts and talents and a personality that will make an impact on peoples’ lives. And I have a responsibility as a parent to find those gifts, to mold and shape him in the direction that he needs to go, and to offer my encouragement so that he can perform to the best of his abilities.

Autism, in essence is really just a different way of seeing the world. I dislike the stigma attached with the word “autism.” A word I’ve seen floating around that I prefer is “ausome.” Just a different way of spelling awesome.

“The difference between ‘ausome’ and ‘awesome,’ are the letters ‘u’ and ‘we,’ and from now until forever Jonah, WE are all here for U! And you make us SO proud!”

Happy Birthday Mr. Coco-pugs!

Love, Dada