When all is not said, nor done!


After we visited the neurologist in May, we had some homework.

Firstly, we were told to get Rollo’s hearing checked.

Yet, when I called the audiologist—the number was provided by the doctor—I was told by the receptionist that if he can’t sit still, it isn’t possible to test his hearing. We’d have to try when he’s a bit older.

I took that at face value. After all, they’re the experts.

Next, after he hit his milestone of having 0,2ml of medicine three times a day—and had hopefully started responding—we had to take him to the speech therapist. Again, as part of our team, the doctor provided us with the number of a very kind lady.

He’d told us that if we didn’t go to someone qualified to teach autistic children, Rollo would never learn to speak.

This was going to take several weeks because the meds were being introduced slowly. Very slowly. Literally, points of an ml at a time. We’d started on 0,175ml, once a day. That was increased to twice a day, then thrice a day. Then it was upped to 0,2ml.

Finally, day 67 arrived, and we had an appointment with the kind speech therapist lady.

 I know that I, for one, was very excited and somehow, stupidly, expected a lot. Of course, Em had her own expectations, as did the rest of the family.

I’d had visions that she’d flip a mental switch, and Rollo would magically say a word after a bit of practice. Not really, but you know what I mean. I was super optimistic and thrilled for him.

The copious forms we’d completed had stipulated that we should not be late. If we were late, we would forfeit that time from our session. I’m neurotic about being on time and made darn sure that we were all racked and stacked in the car a good half an hour before the appointment. I wasn’t sure exactly how long it would take us to get there, and we still had to find the place, although Google Maps had given me a pretty good idea.

There was a code to get into the gate and another code to get into the building. Clearly, the group of therapists wasn’t taking any chances with security.

We were pleasingly early. No stress.

When we got inside, Rollo, as is his habit, took off to explore. He’s very inquisitive, and those little feet moved at quite a lick. Em followed, letting him wander along, sightseeing. In all honesty, he’s probably just looking for a television. He’s relentless in this quest and get’s somewhat irritated when his search proves fruitless.

Em led him back to the waiting room, and we tried to entice him with some of the toys that were attractively displayed.

Nada.

Rollo is not a fan of toys.

I whizzed things around and stacked some blocks, but the only thing that kept him occupied was his mom jiggling him up and down and blowing on his tummy. He laughed uproariously.

The clock ticked past our allotted time and kept ticking. Our earliness had long since passed, and the therapist was late. Eventually, she emerged, waved goodbye to her previous client, apologized for keeping us waiting, and we all traipsed into her room.

She had an assortment of stuff laid out on a little pint-sized table. She looked at Rollo, probably expecting him to dash up and start grabbing stuff.

Instead, Rollo ignored it all and went straight for her printer.

I mentioned that he doesn’t like toys, didn’t I? Although he’s enjoyed reading since he was a little tyke, I’ve noticed he only likes his old books. New ones are met with total disinterest.

This was his very first book. It is too tattered to read now.

Being our first session, we answered many questions, and things were nice and casual. She tried many different bits and bobs to try and snag Rollo’s interest, but he kept returning to her printer. Eventually, Em put Hey Duggee on her cell phone to keep Rollo occupied while we finished our business.

Almost immediately, the speech therapist suggested that we get in touch with an occupational therapist and maybe alternate sessions. So I asked if she knew of any good ones. Bit of a stupid question, seeing as the center that she operates from was teeming full of various types of therapists.

She gave us a contact number but warned us her colleague was probably already fully booked.

She also gave us some exercises to do with Rollo. Things like putting items into a box and saying bye-bye, and waving. Using toilet roll inners for making car sounds, pretending it’s a telescope, stuff like that. Taking a box and playing in it, pretending it’s a car or a boat, stacking plastic ups, talking into them, taking turns stacking them.

Simple, easy-to-do things. We needed to wake up Rollo’s mirror neurons. So there had to be two of everything, one for us to do and show and supposedly one for Rollo to copy.

Well, Rollo grabbed my toilet roll inner, turned it around and around, gnawed on it a bit and then tossed it to the dogs, where it joined his own that he’d already chucked his a few seconds earlier.

Saying ‘bye bye’ to the stuff disappearing into the box passed him by completely, too.

And, if you’ve read my previous blog about how he sat on the kitchen counter having his meals for the first few months of his life, he has no time for a box anymore.

Mr Edge always liked to supervise.

It is said that kiddos on the spectrum have little or no imagination. Now, I don’t know if this is true or not, but Rollo doesn’t appear to have too much at this particular stage.

Eventually, I made him little cards with his favourite Hey Duggee characters, laminated them, and used those instead. At least he looked at them and screeched in outrage when they disappeared into the recycled ice-cream bakkie.

We also took some of Rollo’s stuff to a session, but that didn’t make much difference either. So, I made a second set of cards for the speech therapist.

After a few weeks of trying many things and doing more occupational therapy than anything else, she became a little desperate. However, the cards at least caught Rollo’s attention. He’d stroll from the door (from where he was constantly trying to escape) and humour her with a cursory glance at the item she was offering attached to the Duggee card. It worked to a small extent, but I don’t think she was very invested in the idea.

It’s a tad baffling to behold.

There’s a wall of cupboards jam-packed with cool stuff to play with. But, sadly, Rollo was only interested in climbing precariously on the couch or onto the cutie little table. Although there was an adorable miniature shopping trolley, which he fancied, it got packed away because it was apparently not very safe.

He did like bouncing on the exercise ball the first time we went. But the therapist suggested we get one of those for home, so it soon lost its appeal during the sessions.

The first couple of times we went, Rollo was asleep in his car seat before we hit the first stopstreet. Totally exhausted.

Passed out!

After that, he shunned sleep and hooched instead.

He gets horribly carsick, especially when it’s hot. So we’d be travelling along and suddenly hear a noise in the back.

“Oh shiiiit,” Emma would holler, unbuckling her seat belt and leaping into the back to try and do barf control while I looked for a place to pull over. Not always possible in busy Pretoria traffic.

“Maybe he just doesn’t like me,” the therapist said forlornly after one very meh! session.

Em and I protested vehemently that could not possibly be the case. She was lovely, and we liked her very much indeed. We’d also learned a lot from her. We’re finding that this autism journey is a rather steep learning curve, with many new words that are important and affect Rollo’s life.

Like… PROPRIOCEPTION.

I’d never heard of the word before. It’s your body’s ability to sense movement, action and location.

Try this… close your eyes and then put your finger on the tip of your nose.

You can do it, right? That’s proprioception.

Whenever you move your body, the receptors send meticulous messages to your brain about your positions and actions. Your brain then processes these messages and teams up with your vision, nervous, and vestibular systems to create your perception of where your body is and how you’re moving.

But Rollo’s neurodiverse brain is still figuring out how to work and make connections, so he struggles with this. It’s a common problem with kids on the spectrum.

I’d tried contacting the OT’s number that the speech therapist had initially given me. Still, there was no reply to my message. I guess she really was super busy. So I asked for any other recommendations she might have.

Our therapist gave me another couple of numbers. I tried them all, to no avail. So finally, I asked the last lady, who’d been so kind as to reply, if she could recommend somebody else. She promptly sent me yet another three numbers.

Em, and I had already decided that we’d try sitting out of the next session with the speech therapist. Usually, we were in the room (as we should be – although we kept quiet and observed). We thought maybe Rollo might just work better by himself. Not be distracted by either of us. It was worth a try, and I’d broached the idea. She readily agreed.

But as life happens, the next session was cancelled because our lovely therapist and her entire family were down with flu.

One of those OTs replied promptly to my message. She still had time available in the mornings, and a session was arranged for the following Tuesday. (We usually had speech therapy on a Thursday.) So I cancelled our upcoming session, telling her we’d finally managed to zig and zag with an occupational therapist. I think she may have breathed a sigh of relief. She’d been trying to do more occupational therapy than speech, and neither worked.

And so we happened upon Stefanie, our lovely occupational therapist, who, I might add, Rollo adores.

But that’s for the next blog.


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