Dyspraxia, SPD and Discontinuing Occupational Therapy

Jam is 5 years old!

A while back, I wrote here about our dilemma of whether to continue with occupational therapy after Jam's therapist closes her home practice and retires at the end of July. Well, the end of July is fast approaching. And we don't have a replacement therapist lined up. In fact, I've decided it's a good time to end OT. At least for now. Maybe forever. Who knows? I'm a little nervous. But also a whole lot excited.

We've been attending occupational therapy for 2.5 years- that's half of Jam's life! And I mean attending religiously. At minimum once a week, regardless of holidays and vacations. And there's been more than a few long stretches of going twice a week. We initially started doing that because Jam, when younger, was so SPD avoidant and dyspraxic slow and so little was getting accomplished, he needed two appointments a week just to cover one appointment's goals for any hope of progress. Then later, due to preschool anxiety issues, we'd attend semiweekly appointments the month before school started through the month after just to keep him manageably regulated. And now, since our therapist announced her plans to move on, well, we're getting in all the appointments our insurance will let us cram in!

Jam doesn't remember a time before Miss S and visiting her home for work and play. OT has been a huge component of Jam's life. And of mine these past years. So why do I feel now is a natural time to stop?

OT is time-consuming

It's not just the OT sessions themselves that are time-consuming, but the whole routine before and after the sessions. Traditionally, Jam had been very resistant to transitions so we developed a ton of routines around these transitions to lessen his anxiety and increase his comfort level so that he could actually learn things and do things and progress on things. And while Jam doesn't need as many now that he's older, weaning him from some of these routines has been a very gradual process. And he's kept a few of them, like playing in the therapist's outdoor sensory playground for upwards of 40 minutes after each session. By the time we actually get home, it's time for lunch already. Except that Jam usually requires time to transition peacefully from the car to the house and so ends up playing in the car or outside in the yard for another 20 minutes before finally coming in. OT has never been a 'get in, get it done, get out' sort of thing.

We need more unstructured time

I'm always looking for ways to balance Jam's structured activities with his (and my) need for downtime. We have a lot of structured activities/appointments. And this kid is only 5 years old! Breaking from OT now would free up some time. Especially morning time which is Jam's best time of the day. Unfortunately, his 'best time' is also the best time for him to actually be in therapies learning and practicing new skills. Right now, he has four 10am appointments a week. Soon, we'll be down to one.

OT is expensive

Need I say more? And that's with great insurance coverage. Co-pays add up.

I want a turn

I've been attending those OT sessions right along with Jam. I'm in the room. I'm paying attention. I'm doing my research. And Miss S has taught me so much about how to observe Jam and figure out what he's needing and why. She knows we will not be continuing with OT at this point and has spent a lot of time these past months in helping me put together a game plan on how to work with him. I've always had so many ideas of things he and I would love to do to practice his skills if we just had the time. But he's always so tired and with what little uninterrupted free time he actually has, he just wants to play. Because, well, he's 5! And I haven't wanted to take that away from him. I'm really looking forward to getting to spend even more one-on-one time with him.

Priorities shift

Now that Jam has made solid gains in his motor skills and SPD coping strategies, it's a good time to evaluate priorities. One being 'social skills building'. Whereas Jam was initially terrified of kids as a group, now he wants to be around them in social settings and to make friends. A great measure of the progress Jam's made, I now need to make sure those opportunities are available. A bit challenging given our current schedule balanced against his need for downtime.

So discontinuing occupational therapy is not to say that Jam's been 'cured' or that he's 'graduated' out of the need for OT. In fact, I feel that the therapy has gotten Jam on the upward spiral he's been on for awhile now. And it's that upward spiral that is actually enabling us to end formal OT at this time. If that even makes sense.

And it's not like he's dropping hippotherapy or integrated movement therapy or swimming. He's still got a lot of therapy happening. Plus, if I've made some huge mistake and he plateaus or plummets downward, it's not like we can't start OT up again elsewhere. I've got the referral info.

And, above all, I'm realistic. We might be seeking OT again later. Jam's dysgraphia is an issue he and I very well may need assistance with down the line when he's ready to tackle handwriting. Which is not now.

Right now, he's five. And I want him to have some time to do as many five-year-old things as he can.

It's Official- I'm a Great Mom!

Jam just turned 5 years old!

Our next door neighbor has had some major remodeling projects happening and a general contractor has been over there daily for about eleven months now. Jam and I have seen a lot of him casually over these months since we are always coming and going or hanging out in the yard. The contractor's work is finally wrapping up and today he pulled me aside to compliment me on being a great mom. Going on about how he could tell I was a 'natural' at mothering and all that. Now, of course, I was taken aback at first because, well, a near stranger saying those things to you, out of the blue, is kind of weird. 

But, while unexpected, it was actually really nice to hear. A little bit of validation is always welcome as it doesn't come along everyday. Or most days. Or ever, really. Even if it is validation from the nice, elderly remodeling contractor man next door. 

(And, no, he wasn't trying to drum up contractor business from us. Which, yes, was my first thought. Since I'm all suspicious like that.)

But it was also nice to hear because, basically,  it's true- I really am a great mom to Jam. We're really attuned to each other and are a great match for being together all the damned time. But the more I thought about it, I felt there was more at play than Jam and I just being well-matched. 

Now part of it is just my natural temperament. I'm an INFJ. And, apparently, INFJs make good parents. At least Penelope Trunk seems to think so. She wrote about it here.  And part of it is that I'm very mindful to parent in the opposite way I was raised. No beatings. No screaming. No name-calling. But that doesn't make me a great parent, that just makes me a decent human being. And, yeah, part of it is because I also have the same sorts of issues with dyspraxia and SPD that Jam does. So I can guess how his body might be reacting to stimuli or that I need to up my patience up a notch when he's having a slow processing day. 

Despite all that, I think the biggest reason that I can be a great mom has to do with my parenting partner. Seriously, I ended up choosing really well. Jam's dad is an awesome man. And an awesome father. Our son idolizes him. Now sure, 'Daddy' sometimes lacks a nuanced understanding of our son's special needs and can just be annoying sometimes, but it is because of him that I can be the patient, intuitive mother I am. I'll be honest- other than keeping everything neat and tidy, I don't offer much in the way of cooking and cleaning. That kind of stuff just doesn't interest me. What does interest me is helping this boy of ours grow into who he is. And that takes intuition, patience, foresight and time. Lots and lots of time. And my husband gives me that time and the space and trust to do it. It's a huge leap of faith he takes daily as we see him off to his soul-killing job each morning. Faith that I'm making good decisions and taking excellent care of his son while he's away.  

Moreover, he understands and supports our low-maintenance, no-drama, quiet sort of lifestyle. Without it, I would be a stressed, distracted, cranky OCD she-beast mama. Not the best match for Jam's temperament and needs. Things around here would quickly suck for everyone. So my awesome husband willingly does his share of the cooking and cleaning and childcare to help preserve peace and order. 

Besides, he also brings good teeth to the gene pool and lots of smarts. Plus, we wouldn't even have a kid if it weren't for him. Literally, of course, but also because it was his idea to have a kid in the first place. We'd been together for 15 years already and I was OK with not having kids. He's the one who up and had an epiphany about deathbed regrets if he didn't get to be a dad. 

And, as it turns out, having Jam has been the single most gratifying and redeeming experience of my life. Jam healed my soul and I thank my husband for it every single day.

Dyspraxia, SPD and the Perils of Outdoor Soccer

So here I am writing from a bench at the local community center. I can't believe I signed us up for soccer class again. Especially since one of my goals this summer was to de-structure our structured activities. But the tennis class Jam wanted to take conflicted with hippotherapy and hippotherapy trumps a six-week tennis class. And the basketball class offered is an instructional basketball class and is for the serious kids looking to build real skill. The soccer class not so much. Less formal, more fun and games.

So soccer it is.

I had reservations about signing up, of course. I have reservations about everything. So many variables to consider and weigh. And while I do tend to over-think everything, this time it's warranted. (Yes, I realize I say it's warranted every time!) But this time it really is. Because this quarter the soccer class is outside. On the slightly uneven grass field.  In the full sunny sunshine. And we all know how Jam gets in the sunny sunshine. If you don't remember, you can re-read this. And this. Basically, his brain goes all haywire in the sun. Which is a problem and here's why. There's a lot of filtering to be done out on the field- people riding by on bikes, people walking dogs, kids screaming on the playground, birds chirping, airplanes flying overhead, the breeze blowing. Jam tries to process all of this. SPD kids have trouble filtering. In the sun, he gets hit double-hard, double-fast. The messages his brain sends and receives get all jammed up. And that is especially problematic for the dyspraxic. Because his body needs to send and receive those messages correctly to successfully move, run, kick the ball, and work with the other players. And to navigate that slightly uneven grass field. So I was worried he would be a hot mess all over the field. And it turns out that he is. He's fallen down four times already today. Like, he's literally just standing there not moving and then all of a sudden he face-plants. Like someone pushed him but no one did. It is insane. Fortunately, so far, he doesn't seem to care.

Some days, on bad days, he does care and tries to limit his movements because he doesn't want to 'fall down anymore'. Those days make me a little sad.

So why sign up again? Well, here's the deal. It's the same coach, same location and same informal approach as last time. Which works well for Jam who has, until recently, been very wary of new situations and who still needs lots of repeated exposure to get something automaticized. Since he's done this all before, maybe this time more of it will stick. Plus there's only four other kids in the class (great for my group-phobic son) and the coach is really good about including Jam and breaking down even the basics into step-by-step instructions.

And there's the socialization benefit. This class is specifically for 4-5 year olds and the kids tend to play on the playground after class. It's an opportunity to find new friends. Especially now that Jam's gotten to the point of wanting to play with other kids. But many of the kids around here are heading off to kindergarten in the fall and won't be around anymore. Jam's chances to spend time with kids his own age will likely be decreased. For awhile anyways.

Interestingly, though, soccer class has validated for me that Jam is not ready for the academic kindergarten of today. One, he has a mid-summer birthday so there's that. But watching him in class- he still can't sustain focus and attention for more than 10 or so minutes. And he quickly loses track of what he's supposed to be doing and where he's supposed to be at any given moment. Unless he's doing something highly relevant and personally interesting. Which soccer is not. So what does he do instead?  He names the soccer balls, he makes up new soccer games with lots of complicated rules (since he still doesn't know any of the real soccer rules). He just kind of does his own thing. Which is much more highly relevant and interesting to him. Until the coach realizes he's off track and pulls him back in to the class. I totally get that about Jam because I'm the same way.

Yet he wants to be there. Because, believe me, if he didn't, we wouldn't be. I can think of a million other things I'd rather be doing. Like staring at a beige wall. But he works hard and has a good time doing it. He looks forward to it. And it keeps his body moving. And the one thing I need is for this dyspraxic kid to keep moving.

Dyspraxia, SPD and Passing Up Developmental Preschool

Jam is currently almost 5 years old. 

I'd been hearing about the developmental preschools offered through our local school system since Jam was diagnosed at 2.5 years. But suspecting that Jam, in all his SPD anxiousness, wouldn't fare well in the loud, transition-heavy public school environment, I had written them off early on. Then we decided to discontinue with the cooperative preschool system and a Montessori-inspired preschool.

Jam's occupational therapist recommended pretty strongly that if he were going to go into a formal school environment at some point, he should be in some sort of structured peer environment now. To build up social and classroom navigation skills. Being that he was already 4.25 years old.

Leaving no stone unturned, we finally decided to check out the developmental preschool system. I'd known some parents with kids who had flourished there. But first Jam would need to be evaluated. And evaluated he was. By a nurse, a physical therapist, a speech therapist and a school psychologist. It was uneventful. I listened to the whole thing from the other side of the half wall. No surprises. In fact, after Jam qualified for services, I showed his OT the evaluation and she said they nailed it. With the exception of one big area of concern he didn't qualify on and that was gross motor skills.

Actually, he missed the gross motor services cut-off by .6. That's point six! Maybe he was just having a 'good' gross motor day. And the cut-off has to be somewhere. I get that. But still- .6?!  He did qualify, though, for services in self-help/life skills, social/behavioral skills and, of course, fine motor skills.

And therein lay the first of a few big problems.

Jam really did not care for the physical therapist who administered his evaluation. The same therapist who would be providing him his 15 minutes of physical therapy twice weekly. She was definitely not the warm, joyful type Jam performs well for. At first, I just thought that maybe she put on a stern exterior for testing purposes, but she was the same way in the class I later observed and the same way during the IEP meeting. Just kind of...unhappy. Possibly burnt out- she has a hard job! But I already knew she wasn't going to get much out of strong-willed Jam in the way of cooperation or effort.

Another issue was that class was five days a week. It had been challenging to make it two and three days a week the last go around with preschool. Five days seemed highly unlikely. And we would have had to cancel most other therapy activities to attend. And, unfortunately, class would have been in the afternoons. And for a kid who had just dropped naps on his own two months earlier, afternoons were not his time to shine. Or focus. Or participate. Or learn anything.

Also, looking over the first round of individual IEP goals for Jam, I realized we could probably accomplish the same things on a faster, yet less anxiety-inducing timeline with the personalized, one-on-one attention I could give him.

I think the nail in the coffin, though, was this. Jam has a mid-summer birthday. And it would take a minor miracle for him to be comfortable and ready for kindergarten 'on time'. And the IEP folks were pretty clear about not holding kids back from starting kindergarten 'on time' unless there were extremely compelling reasons. And also that if Jam didn't go to kindergarten in the Fall, he would be too old to continue in the developmental preschool. So we would have transitioned him to this program mid-year for 4 1/2 months of services. Followed by a summer break with no services. And then he'd need to transition elsewhere until he was kindergarten-ready.

It wasn't a hard decision.

I'm glad we went through the process and that the option is available to those that need it. The teachers seem wonderful and caring and the program is most definitely a life-saver for some. But I have no doubt that Jam wouldn't be progressing like he is had we decided to go that route.

It was time to close the door on the idea of preschool.