Category Archives: therapies

Squeaky Wheel

I guess late August into early September will just always be my season of squeaking until I get grease.

Today, the bus came…20 minutes late. I called the garage about 10 minutes before school started and they assured me the bus was on its way. I opted to just wait for it since by the time I walked home and got the kids in the car and drove to school, Mikey would be late anyway.

Of course, the later the bus is, the more Mikey chews the crap out of his hands. He’s been nervous about chewing his gum because he has a classroom rule about no gum. Well, if the school would set a meeting to discuss his 504 plan, we’d be able to discuss this with his teacher!

And so, I have to send emails and make calls. His plan hasn’t even been distributed to his teachers, which doesn’t surprise me. I can’t decide whether I should email my photograph of the plan (my only copy of it) or just wait for school to be deeply in non-compliance so I can report them to the state.

Of course, I don’t want to deplete the school of precious resources. But I also want the damn social worker to be a little more competent. Cody and I looked up her salary online. She earns $80,000 a year. I’d like to hope that’s enough compensation for someone to at least distribute paperwork properly.

I’m going to operate under the assumption that the bus will be late this afternoon and just won’t head out to the stop until much later than Monday.

How many years will my stress level be like this in autumn? At least a few more, it seems.

Eyes

As you can see in the cover photo for this blog, Mikey has always tilted his head to the side to play with wheeled toys. Therapists tell me this relates to executive function, and it’s something common among kids with ASD. He continues to do this, but I’ve also noticed a ton of squinting lately.

Really, the past five months. He squints when he’s building with Lego, he squints looking at screens, he squints when he reads. He keeps passing vision tests at the pediatrician and screenings at school, but worry simmered just beneath my surface.

Just when I had decided to call an eye doctor about it, the school nurse called to tell me Mikey failed his stereo/depth perception screening. She said she administered it several times, because she’d never seen a kid fail just that and not the other aspects of the vision screening.

I decided to call a developmental optometrist whose office is about a half hour away. I’m not entirely sure what that means, to be honest, and I already know the person will suggest a vision therapy not covered by insurance. I also know that I won’t be making regular drives up to this office to receive expensive vision therapy not covered by insurance. And maybe I don’t believe in the therapy?

Basically, I’m a little worried about voodoo pseudoscience, but I also know there’s something going on with my son’s eyeballs, and I want to learn all I can and try to help him.

Thankfully, the doctor had an opening on a day my mom is in town to stay home with the other boys, so I’ll just have to pull Mikey out of school early and he and I will get a special date together as we trek up to Wexford to learn about his wonky eyeballs.

Discharge

IMG_2209Mikey has graduated from wrap-around services. Officially, they use the term “discharge.” It didn’t feel like a discharge, though. We had a party! His last home visit with our BSC, Mikey was in charge of the whole plan. His ideas ranged from a trip to the bowling alley to “let’s sit on the couch and watch Lego movie.” Ultimately, we went to the grocery store and bought some fancy cookies and then played Guess Who.

Oh, and then we went out for hibachi.

At school, he barely noticed that S was gone, although he had started talking to her when she was there and deigning to suggest he was happy to see her. In front of other people, even!

Part of me was terrified of this day, that as soon as it happened we’d experience a dramatic setback and I’d be on my own. But now I know that even if something happens, I have a wonderful support system I can rely on.

Plus, any time in the next year, I can call up our agency for booster sessions with our BSC if necessary.

Truthfully, things have just been fine. Meeting with our wrap-around team is now one less thing we have to do each week. The void has been filled by Mikey having to read out loud for 15 minutes each day. And that? Well, the other day he said, “Did you know I can read inside my head? I just look at the words with my eyes.”

Next chapter, indeed.

First Week with Less Wrap, More School

Mikey had way less (fewer?) services this past week and stayed four full days at school. He was a tired dude by the time I picked him up Thursday, but I could tell he was much happier. He even seems to like his hard-earned weariness. He agreed to “close his eyes and lie down” with me during Alex’s nap on Friday. We didn’t dare refer to our actions as napping or sleeping, mind you. But I got to fall asleep in a quiet room mid-day, so I wasn’t complaining about nomenclature.

It’s hard to believe things are going so well right now. I’m sort of waiting for the other shoe to drop, because that’s just been how it goes when things go well for me with Mikey. We’re almost two full months into the medication, though, and I’d say things get better each day.

He swallows his pill on the first try most mornings. Within a few minutes of taking it, he agrees to get dressed and then helps Alex get ready: “Let’s sit you down here on the step so I can zipper your coat. There you go. Now which shoes do you like?”

I love when he uses his wee man voice talking to his brother. I love how he still clings to odd objects (like a beer bottle cap he calls his “perfume”) and insists on having them with him at all times–only now, instead of the objects taking over his whole day they’re just something quirky he talks about.

He’s using his new abilities to focus to really delve into things that interest him. Currently, he’s fascinated by mail solicitation. Our neighbor mailed us a fundraising thingy for the American Heart Association. Mikey just doesn’t get it that someone would mail a letter asking for money, doesn’t get what we are supposed to do in response to such a letter, and spends his afternoons making/cutting out money, letters, and envelopes so we can all act out these sorts of mail transactions.

Just this afternoon, Cody was meant to mail one of Mikey’s home-made hundred dollar bills to a car dealership so they would bring us a minivan (with DVD player, obviously). What a thing for a small child to digest, when he only ever witnesses his parents conduct financial transactions via apps on their smart phones. I love that he can take some time and think about it.

But like I said, he’s been tired after so much school. And when he’s tired, he throws temper tantrums. Because he’s four! But that’s really all they are–temper tantrums. I haven’t had to bear hug him, haven’t feared for his or my own safety, haven’t locked Alex in another room for his safety…these things haven’t even occurred to me.

I sometimes can’t help but smile during a late afternoon temper tantrum because it seems so very normal (of course my preschooler would cry when he can only fit 7 plastic bananas in his toy truck bed). Mikey becomes even more enraged because he thinks I’m laughing at him, but really I’m just observing my wonderful ability to parent through these sorts of things. I know it doesn’t feel like it to him, but it’s just a tantrum over some plastic bananas, and I can tell that soon enough, a hug will help it pass and we won’t even remember to tell Cody about it later.

So, things continue to go well here. We meet with our ped in a week to see how Mikey’s weight is holding up. Probably it’s not, and we’ll have to start thinking of some solutions there. I love that I’m not concerned about it!

Medication Observations One Week In

Mikey is a full week now into taking his “good choices medicine,” as he calls it. In short, we’ve noticed remarkable, astounding results. The first day he took it, he really didn’t swallow too much of the pill–chewed it up despite our protests and nullified the extended release features–and he still had the best day he’s had in months.

If I recall, I took the kids to the museum solo that day, and he was utterly peaceful and agreeable. Very cooperative. This was the very museum I once vowed I’d never revisit after he escaped from me many times, climbed some of the dinosaur skeletons, and was so generally unmanageable that I locked us in one of the bathrooms so I could cry for a long time.

The whole weekend, we were pretty much trapped indoors at our house because we got a whole bunch of snow, and thanks to the good-choices-medicine, Mikey was able to be peaceful with our family, and even enjoy a nice play date with some neighbors.

Sure, he was his usual self. He has been spirited and quirky and very protective over specific cars and toys. He’s had a lot of interesting things to say about potential scenarios that could shake out with the family of foxes living in the woods behind our house. But he hasn’t felt like a lightning bolt about to strike.

We haven’t felt his energy simmering, about to explode. He’s been level.

At school Monday, I got a great report from his teacher and I broke down crying. She hadn’t realized how immediately the medication would begin to affect him. This specific medication doesn’t need to “build up” in his system and wears off after 6-8 hours.

In fact, we can watch and observe the moment it wears off. Today, for instance, when I picked Mikey up at school, I was watching from afar while helping the carpool kiddo get his things. Mikey was sitting on the rug with his classmates, eating snack. Then, out of nowhere, he sprang up and began running circles around the room. It’s just that fast, that dramatic a difference.

Mikey has been complaining of some stomach pain this week, which is a side effect. He and Cody had a nice little moment discussing this stomach pain, since Cody experienced it when he began taking ADHD medication. “That goes away so soon, Mikey,” he assured him. “Your body just has to get used to it.”

And getting him to take the pill each morning has been, well it’s been really fucking terrible. We’ve tried a very long list of suggestions from other parents whose young kids have had to take medication. Usually, we’ll try for about a half hour and then either Mikey will get frustrated and chew the darn pill or else Cody will ram a popsicle stick from the craft bin down Mikey’s gullet and drop in the pill.

Today, the whole pill-taking process only took 18 minutes!

While our pediatrician says we can choose to take medication vacations on weekends, we’re not going to do this until Mikey is more used to taking his pills. We want him to practice swallowing it and we want him to see and feel what it’s like to be able to concentrate and actively CHOOSE his behaviors.

In sum, we’re beyond thrilled with the results and it would appear (so far) that reality is meeting my expectations for this intervention.

Will They Stop Calling Me “Bad Boy”?

I met with Mikey’s pediatrician yesterday. It was a very productive conversation. Unlike past visits with him, where I’ve felt geared up for a fight to “prove” I wasn’t insane, that something was going on with Mikey, yesterday’s visit was definitely two people on the same page from the start. I suppose it helps that he is the one who suggested the meeting.

Just in case, I came in to the meeting with a note from Mikey’s teacher, listing all the particularly concerning behaviors, but I didn’t need it. Once I talked about the bolting from school, Dr. H leaned back and said, “Yes. I think medication will be an emergency intervention for Mikey.”

We talked about the categories for which it gets prescribed: hyperactivity, impulsivity, distractibility. We talked about the long list of ways Mikey meets all those categories. We talked about how I take Alex with me to the bathroom because I can’t be sure Mikey won’t decide to smother him with a blanket or pour water on his head or flick him in the eye.

And then we got down to brass tacks and talked about which medication would be appropriate, which dose, what to watch out for, etc.

I learned our pediatrician has a pediatric narcotics license, and that he can prescribe these sorts of medications without additional support from a psychiatrist. Mikey will go in to the office every month for weight checks and follow-up, at least for awhile, and I don’t have to add an additional doctor and clinic visits to my full schedule of managing his care.

Last night, Cody and I told Mikey we’d be giving him some medicine to help him make good choices. We talked about how the medicine should help him to pay more attention, even when his behavior team is talking to him about how to make better choices, so he’ll be able to remember more of what they say.

He nodded and then asked us if the other children would know he takes this medicine. We said that was up to him if he decided to tell them. He said, “Will they stop calling me ‘bad boy’ if they know I’m taking the medicine?”

Oh! My heart breaks. He told us the other children all call him “Bad Boy” at school, all except one girl who is soft spoken and, in Mikey’s words, “A kind girl.”

I was reading about how children with ADHD tend to have a low sense of self-worth, probably because their behaviors cause others to think of them…well, as bad boys. As rough kids. I’m so sad that the kids at school don’t see Mikey as a funny guy, as a boy who can tell you about vervet monkeys or find all the scrolls in the Waldo book.

They just see his symptoms. They see a rough boy who screams in the classroom and runs and eats the art supplies. Already at four, they see him this way.

Cody and I feel very positive about our choice to begin this medication. We just gave him the first pill. I’m trying not to get my hopes up too high, but our pediatrician thinks the results will be instant and dramatic.

I’ll keep you posted.

PCIT, Take Two

After Mikey and I met mastery of the first phase of PCIT, the child-led phase, we moved on to the parent-led portion of the program. This was much harder for me to work with in the therapy sessions, but has ended up being very helpful at home.

The idea is that the child must comply with a command. If a parent gives a command and the child does not comply, the child gets a prescribed type of timeout. The process is meant to prepare families for worst-case scenarios, such as giving safety commands in a parking lot or crossing the street. Now, what I liked about my clinician was that she really emphasized the importance of choosing commands wisely.

The thing about PCIT is that it requires strict consistency. Adherence every time! It’s a little exhausting. For me, the tricky part was working on when to give commands, and when to use other ways to get Mikey to do things I’d like him to do. For example, if we were playing and I’d like him to hand me a different color play dough, I can ask him to do so, like a question. He has a choice there, and it’s not really a big deal if he chooses not to help me out with the play dough.

If I’m changing an unexpectedly poopy diaper and run out of wipes, I might command Mikey to go get me the other pack of wipes from the shelf, because that’s more of an emergent situation. At least at my house. We always seem to find ourselves in situations where Alex has poop on his hands. I digress.

Luckily for me, the session where I went in to learn about the parent-led phase of PCIT, my mom was in town and could stay home with the boys. It took about an hour and a half to walk through all the steps of the timeout routine, to talk about what a command really is and some alternatives to giving commands, etc.

The following session, my clinician began by explaining the timeout cycle to Mikey. She used a stuffed bear and had a whole role-play thing. He was able to answer a lot of specific questions about the timeout sequence, so we know he gets it, knows what would lead him to be in timeout, and what happens next if he bolts out of timeout.

One of the trickier things for me to work through in PCIT is giving silence and space for words to sink in and to also acknowledge that my son is smart–smarter than I give him credit for by repeating myself. What I notice sometimes when Mikey is in timeout is that he asks questions for what feels like one hundred years. The program dictates that I’m not supposed to speak to him in timeout. I’m not supposed to engage or empower him by giving reasoning or reminding him of rules we all know he understands perfectly well.

What I didn’t like is that in order for me to practice doing the timeout sequence, we had to manipulate things so that Mikey would disobey so that I’d have to give him a timeout during the session. This was extremely hard for me. It felt icky. I hated it. But I did appreciate having a witness to my technique and getting some feedback as to how I managed the situation.

With the clinician, we developed house rules (gentle hands, tell the truth, no snatching). If Mikey breaks a house rule, he gets a timeout. What we’ve found is that he almost never gets a timeout for disobeying commands. Many, many times per day, he winds up in timeout for hitting his brother or snatching toys.

Often, the timeout is just the break Mikey needed from what was clearly something overstimulating for him. He sits in the chair, calms down, and we all hug and get back to business.

But, sometimes, I can see that the timeout sequence is just exacerbating some frantic energy that’s been brewing in Mikey for hours. This is where I still need help and am glad we have wrap-around services bring clinicians to my house to provide this help. My work now has been what to do to get Mikey doing something else before he hits his brother or how to recognize when he’s about to throw wooden trains across the room.

What Cody and I have learned is that there are things we can do with Mikey to build him up (like the PCIT special play time) so that he’s excited to do things for us when we “command” him to. We’ve also done really well with doing the timeouts in public and using an applied consequence or leaving if the public timeout isn’t working.

Every day, we still struggle with Mikey’s explosive outbursts and breaking house rules. We’ll see how that continues to improve.