Again, we’re just sharing this information as a point of reference for our journey in the world of autism. None of what is posted below is intended for diagnosis purposes nor am I a medical expert by any stretch of the imagination. If you want to talk about grant writing, I’m your gal but if you think I’m an expert in neurology you are so, so wrong. All that to say — don’t use the below for any diagnosis purposes or even as hard fact. If you’re concerned about neurological or autism-related issues, contact someone who actually knows what they’re doing (aka not me).
As my friend Anne says, Monday was a “whopper” of a day. (Say “whopper” with a Canadian accent. It’s much more fun.) It was filled with appointments and tasks from eight in the morning until six in the evening. Lots of big things happened so Chad took the day off to participate in the fun.
First, we had an 8AM session with Miss Alison. Nate loves Miss Alison and he is also a morning person, which just makes for goodness all the way around. Nate had an awesome session, even saying “Hooray!” and making the cheering motion twice during our rousing rendition of Wheels on the Bus, the first time I had seen him do that. It was also great for Chad to see what progress Nate’s made in a month’s time.
After session #1, we were headed the neurologist’s office. When Nate was first diagnosed, it was suggested that we get a baseline visit for Nate with a pediatric neurologist as 15 – 25% of children with autism develop seizures. Yes, that means that 75-85% of the kids don’t but it’s quite a large uptick in the odds from 1% for kids who don’t have autism. It took us a while to accept that we needed a pediatric neurologist on our team and, once we did, it was a 2.5 month wait to get an appointment. We loaded up the four wheel drive sleigh and drove off to our appointment.
When we arrived, we were greeted by a huge sign in the waiting room: No Food and Drinks Allowed. It was snack time. Nate was hungry. That sign was stinky. Under one of the waiting room chairs was a boom box with a similar computer printed note that read, “PLEASE DO NOT TOUCH.” Do you recall what Nate did during his ADOS Test? Did I tell you that we gave Nate my circa 2000 CD/Cassette Tape player as a toy? The boy made a bee line for the no touchy-touchy item but, thankfully, didn’t need to be restricted from it for very long as we were summoned into the office.
This pediatric neurologist was recommended to us by our sage pediatrician, and Nate’s therapists had heard good things about her from other families as well. But we didn’t know what to expect. Would the doctor just ask questions? Would she work with Nate? Would she cut his head open and take a look inside? We had no clue. Turns out, it was all talking with a little poking of Nate thrown in. The neurologist asked the usual intake questions that you’re asked at most doctor appointments and about the types of therapy that Nate’s receiving. As it became clear that the questioning would take a while, I asked (and was granted permission) to give Nate some goldfish with the caveat that he wouldn’t make a mess. Pediatric neurology…you think they’d have an understanding for snack mess. Chad and I furiously swooped up every dropped cracker before Nate could grind it into the carpet with his wee little shoe.
The questioning took place the doctor’s lovely office with book and journal lined shelves, a giant bead maze for Nate to play with, and pristine goldfish-free carpet. Nate thought the place was pretty awesome until we were asked to go to the examination room. As soon as Nate saw crinkle paper on the table, it was over. He went from thinking, “High five for neurology!” to “Holey! She’s a doctor! I’ve got to get out of here stat!” She put some toys on the crinkle paper but Nate thought the toys were stinky and he told us so. Ever clinging on to his goldfish crackers, Nate sat on Dad’s lap and Dad sat on the crinkle papered table to show Nate that there was nothing wrong with it.
The neurologist did reflex tests everywhere on Nate’s body (he thought they were kind of funny), measured his head (We know. It’s big.), looked in his eyes and tested to see if he’d follow the light, and anecdotally tested his hearing. Then we went back into her office for the Q&A portion of the visit. Before the appointment, I asked Nate’s six therapists if they had any questions they thought I should ask the doctor. Two suggestions came up: 1) get a good description of the two types of seizures and 2) ask about low muscle tone.
She very clearly answered the “types of seizures” question. There are two kinds: petit mal (small and bad) and grand mal (big and bad). Grand mal is what you probably think of when you hear seizure: someone uncontrollably flopping about, possibly frothing with saliva at the mouth. That’s big and bad. Petit mal had me more concerned because they’re bad but, well, small. Really small. Here’s how she described them: should Nate have a petit mal seizure, it will appear as if he checks out for a little bit. Five seconds. Ten seconds. A little longer, maybe. After I exclaimed that Nate does this all the time, especially as a tactic (or so we think) to get out of therapy, she explained the two big differences between a petit mal seizure and Nate being a space cadet. 1) After the seizure, Nate will be dazed and confused. 2) Nate will be unresponsive to my attempts to get him to snap out of it. I could slap his face and there would be no response. The doctor assured me that, if we miss the first few (and, should Nate develop them, it is likely that we would), the seizures would eventually increase to such a rate that we will notice them without fail. The petit mal seizure description made us feel pretty confident that, when Nate’s checked out, it’s because he’s on Planet Zulu, dreaming of Curious George, and not because he’s having a seizure. She also gave us a lovely info sheet on grand mal seizures and encouraged us to call 911 for assistance, especially for the first seizure. We feel better knowing what we need to do should a petit or grand mal seizure arrive in our piece of the world.
Then she talked about Nate’s low muscle tone. Did you know that muscle tone is determined by signals from your brain? It’s true. I had no idea. Since Nate’s brain is misfiring in certain ways, it’s not sending enough signals to his muscles, which is why they’re not engaged when he’s sitting and partially why it took him forever to walk. However, the neurologist had a very different suggestion than our current therapy team. She felt that there is nothing that can be done about improving muscle tone; it will correct itself by the time Nate reaches adolescence. In fact, the neurologist felt that we needed to focus more on speech, going so far as to write on her prescription pad that Nate should have a minimum of two hours per week of that type of therapy.
The third conversation? Headbanging. Nate hits his head–hard–on equally hard surfaces. Through data collection and analysis, we know the functions of it (which I’m going to write about later because it’s pretty fascinating). It is a behavior that is impossible to ignore. Nate has sported more than his fair share of bruised foreheads because of this behavior (see Christmas 2010 photos…) and has the real potential to harm our son. Whenever he hits his head, there is a response from an adult that helps him understand that the behavior needs to stop and a correction is done to help him learn how to appropriately communicate what he is trying to say. Surprising to us, the neurologist only wanted to know if Nate has ever hit his head hard enough to black out. The answer? No. The reason? We’ve stopped him. Since we said no, the doctor’s suggestion was to simply ignore the behavior.
This is where the going gets tough. Conflicting answers from equal experts makes decisions difficult. Had we heard this advice at the start of our journey, we might have said the neurologist was right. But we’ve now experienced the wonders of occupational therapy. Since Nate started OT, which focuses on improving his muscle tone, Nate can sit without being in a backwards W, can run (heck – he’s even been seen skipping!), can reach up, and do a myriad of things he couldn’t do before. Yes, he’s improving with age–but he’s also improving at a much faster rate because of the efforts of his therapists. Similarly, Nate’s receiving one hour of speech therapy a week because he doesn’t talk. Since Nate’s imitation skills are low, he won’t imitate sound, either. His speech sessions look a lot like every other session except that the structure is a bit looser. Once he starts talking, we are confident that Miss Susan’s full suite of skills will come into play. For now, we all patiently wait for our boy to talk. And regarding Nate’s self-injurious behavior? We can’t ignore our child hurting himself. We cannot allow it to get to the point where he blacks out or his retina detaches. And, if we ignored it, we wouldn’t understand (like we do now) the different communication functions it serves to our nonverbal boy. In each instance, he’s telling us something. Now that we know what, we can teach him how to tell us in a safe and appropriate way.
The great news? So far as the neurologist can tell, Nate is fine. He has never experienced a seizure nor hit his head hard enough to black out. At this time, she is not recommending an EEG or a MRI, which was a relief to us. We don’t want to needlessly put Nate under anesthesia nor can we imagine him tolerating hundreds of glued suckers on his head. However, if a seizure occurs, one of those tests would be needed.
We went home, exhausted, but still had a huge day in front of us. Lunch for Nate (and Mom and Dad), an unplanned visit to the pediatrician’s office for what turned out to be an ear infection, a team meeting with all of Nate’s therapists, a 1.5 hour session with Miss Lisa (which was rocky because Nate had a stinky nap), and a meeting with the head of our therapy firm to learn about our experience there.
At the team meeting, it warmed our hearts to see therapists arriving one by one, clamoring for news from the neurologist. They were all dying to know what happened and tried to wait patiently until everyone gathered. We went through it all and they were willing to discuss and consider the neurologist’s recommendation of increasing speech services. In our uneducated opinion, both Chad and I feel that additional time could be added in other areas but speech isn’t one that Nate will best benefit from at the moment. As well, we all debated what the neurologist said about Nate’s low muscle tone and we agree that Miss Katy has greatly improved Nate’s quality of life, regardless of the good doctor’s opinion that nothing can be done. For as much as Nate is our child–our perfect, only son–he’s a kid in the lives of these six therapists, too, and it’s clear that they love him very, very much.
Next to the child CPR info card on our fridge now hangs the grand mal seizure info sheet. Somehow I think that, if we’re prepared, nothing bad will come our way.
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