Temporary Hiatus

Jam is currently 5 years old. 

My attentions need to be focused elsewhere for the foreseeable future.

Sigh...  I really like spending time here. But there are higher priorities right now.

Hopefully, I'll be back soon.

In the meantime, please feel free to email me if there's anything I can help you with!

~ Heidi

Dyspraxia, SPD and the Importance of Friends

Jam is currently 5 years old. 

Jam's best friend, B, was over to play today. Up until a few months ago, when B started kindergarten, they'd been getting together at least twice a week. It helps that they're the same age, have known each other since babyhood, live close and have similar temperaments. They even share some SPD and anxiety traits.

I am so entirely grateful that Jam and B have had each other for these years. They have a lot in common and it's been a mutually beneficial experience.

Something they don't have in common is dyspraxia. Because Jam is dyspraxic and B is not. B runs, B climbs, B is quick and B puts together complete Lego sets in a flash. Jam doesn't do those things. Instead, Jam makes up detailed imaginative play scenarios, Jam uses words and concepts beyond his years, and Jam easily holds his own in conversations with adults. B doesn't do those things. 

And, somehow, they've managed to meet in the middle and have tons of fun playing for hours on end. But, as they've aged, the differences are asserting themselves more and that common middle ground is shrinking.

Add to that a lot less available time in a week for playdates now. B is in school until the afternoon and needs time to decompress afterwards. And it just happens that Jam's therapies schedule has moved primarily to afternoons. We have one weekday afternoon open for playdates. When we first moved to an afternoon appointment schedule, I thought it would be great. Jam does best when he has those first hours in a day to be non-rushed and to just play and do whatever interests him. The cost for that, though, has been a sharp decrease in playtime with B.

And it worries me.

It worries me because I see my son losing his best friend. I see Jam confused that B is not interested in pretending to be super heroes anymore. I see B becoming more impatient with Jam's slow pace in all things. And I see B's frustration that Jam doesn't like playground games. They're losing each other. And I suppose that's to be expected as they get old enough to find and play with friends of their own choosing and not the ones their parents chose for them.

But B, having started kindergarten and skilled in all things athletic, has excellent opportunities for finding new and compatible friends. Jam, a bit less so.

The dyspraxia limits his willing participation in playground games that often involve running, chasing and climbing. He is quickly left behind and excluded. And the SPD affects the places he's willing to go and activities he's willing to do. No loud kid-friendly music concerts. No crowded festivals or fairs or pumpkin patch field trips. Last year, B's parents opted against holding B's birthday party at one of those bouncy house places because Jam didn't want to go.

The thing is that friends are really, really important. Especially for kids like Jam. Long-term outcomes for non-neurotypical kids like Jam show higher rates of depression, addiction, incarceration and suicide. Studies show better long-term outcomes for at-risk kids with successful peer relationships, meaning friends.

Which is exactly what non-neurotypical kids like Jam have challenges with. The making and keeping of friends. Hence the push for building social skills in non-NT kids. The kids who need friends the most have a harder time getting them.

(On a positive note, though, one study suggests that even one close friend influences long-term outcomes beneficially.)

So while Jam is many years away from those long-term outcomes, I keep all of this in mind now. And it influences what we do now. Such as re-arranging our schedules when a last-minute, but exciting social opportunity comes up. And discarding our long-held rule about weekends being reserved for family time only. And thinking up new and fun suggestions for how Jam and B can play together that involves both their interests. And always being on the lookout for ways Jam can meet new friends. And always keeping that one afternoon open specifically for playdates.

All of this takes a lot of work and energy, especially to keep Jam's social needs balanced with our introvert needs. But it's been well worth it so far.

Jam's Development Plan- Fourth Quarter, 2013

Jam is currently 5 years old.

With most of his friends starting kindergarten recently, it's got me thinking about what we're doing with Jam in terms of development.  Actually, it's something I'm *always* thinking about and have always had solid long-term ideas and plans in my head but I've never organized and written them down formally before.

Jam turned 5 a few months ago and is still in his foundation years- learning, practicing and building up the skills he'll need later for more sophisticated development and learning. It's really important to me to plan beyond the short-term for him and keep in mind the very long-term skills he's going to need- for him to actually thrive and not just survive or get by.

I think that can best be achieved using an approach focusing on his strengths which are his creative imagination, global thinking and interest in many different topics, rather than on his areas of challenge. And always keeping in mind that he's an introverted, sensitive, quite strong-willed kid.

There are five areas I focus on (in no particular order as they're all important)- Social, Physical, Emotional, Intellectual and Self-Care. And here are the ways we're addressing them for the fourth quarter of 2013:

Social: 
* he's taking a kindergarten prep/social skills building class for a few hours two times a week where he can get more comfortable being around kids his age and put into practice cooperation, compromise and conflict resolution skills. He's expressed enough interest in making friends that I feel he's mentally ready for this. And it's an art-based class so good for more motor skills development.
* he's also taking a weekly drama class led by his former preschool teacher for the same social skills building reasons above. Plus he loves imaginative pretend play like this so I think it will be easier for him to succeed.
* we'll continue with weekly playdates with his 3 to 4 closest friends.

Physical:
Jam will continue with his weekly:

* horseback physical therapy (hippotherapy)
* integrated movement physical therapy
* free play gymnastics (since it's the last year he's eligible to attend)
* non-formal swimming time

This all helps in coordinating his body and brain to work together and also for motor planning (due to the dyspraxia). And works on his overall strength, endurance and stamina (due to hypotonia).

Emotional:
We'll also continue to work daily on:

* flexible thinking strategies
* developing coping skills for anxiety and perfectionism
* becoming more self-aware of what he's feeling and what he needs
* communicating those things to us and others (self-advocacy)

Intellectual:
* continue working on his hand strength in preparation for handwriting/letter formation- more scissor work, gluing, tracing
* continue with light exposure to the alphabet (as his interest level dictates)
* a slightly more focused approach to numbers recognition (since he seems to be interested)
* puzzles and mazes
* introduce more breadth of possible topics of interest through books and videos. He's not too interested in depth and details yet.

Self-Care:
* work on completing toilet training, especially in regards to his functional constipation (this is a big one and includes getting the doctor involved again. Sigh….)
* get back to working on getting his socks and shoes on by himself and also being more involved with dressing himself
* work on having him willingly do more things for himself as they get easier physically

NOTE: All subject to change without notice!    ;)

You've probably noticed that there aren't many specific goals with measurable results. The kid is only 5! Having problems with perfectionism, the whole 'goals and results' game would just be setting us up for failure. I'm not driving Jam or myself crazy with that stuff yet (if ever).

Really, these are more like guidelines to visit and re-evaluate every few months to get an idea on where Jam's at, what's been working and what hasn't. Because Jam has dyspraxia and SPD issues, it's important to remember that all these things that we do require an enormous amount of his effort and energy. And he still needs a huge amount of downtime in order to avoid heightened anxieties, intensities and resulting behavior problems (which we have not had in a long time). So I'm always reminding myself of this when those doubts creep in about not 'doing enough' or progressing 'fast enough'.

My only real goal right now is to maintain the daily rhythm that works for us which has enabled him to come as far as he has.

SPD, Hypotonia and Constipation

Jam is currently 5 years old. 

I realized recently that a ridiculous amount of my time each day goes towards reminding Jam to drink liquids. This has forever been a problem. The kid just doesn't like to drink and I think it's something he inherited from me and somehow related to SPD. I also hate drinking anything. Eating, no problem. But I could happily go through a day without drinking anything more than my one daily tall vanilla latte.

Of course, it does take me three hours to finish that one latte because, while it is tasty, it's still something I have to swallow and the physical act just feels... not pleasant.

But I really need Jam to drink liquids, particularly since he developed functional constipation, or encopresis, a few years ago. For the longest time, we thought he was just constipated because bowel movements were always so uncomfortable for him, taking upwards of 40 minutes of straining for the smallest nugget of poop.

Well, it finally dawned on us that he'd actually been spending all that time straining to keep the poop in!

So as soon as we realized that he'd been withholding, we talked to him about needing to let the poop out and to not hold it in. And that's all it took- he willingly started to let it out. But the damage was done. It had already been more than a year of withholding and he'd since lost his muscle ability to actively push the poop out. Or maybe, with the hypotonia and his SPD interoceptive issues, he'd never had it. That kind of seems more likely, but who knows?!

But the good news is that we've been working on it and it's been a long, slow process. Jam's been on laxatives for over a year now and we really need to get him off of them. We'd held off on toileting until he was more mature and comfortable with the idea and now we're there and he's coming along really well. Except when it comes to poop. He only tends to go: 1)  right when he gets up in the morning, 2)  while in a standing position, and 3) in a pull-up. Not good. And while he can feel when the poop is moving down the pipe, he says he can't really work his muscles to help push it out, instead just waiting for it to basically fall out.

Again, not good.

I'm the first to admit that once he started pooping regularly from the laxative, I took a break from the whole thing and got a little complacent. But by now, his rectum should have shrunk back to a regular size so we're going to slowly, so very slowly, begin to lower the laxative dose so that the poop starts forming more solidly instead of the usual peanut butter sort of consistency. The other piece is having him actually sit on the toilet (instead of standing) first thing in the morning when he tends to poop so he can practice pushing and building up the sphincter muscle.

And, all the while, making sure the constipation doesn't start up again. Hence, pushing the fiber. And the regular physical exercise. And all the prompts to drink.

A few things that have been helpful in the drinking department include: 1) letting him use straws to drink everything (which is good for his oral-sensitivitities anyway), 2) BPA-free water bottles with grips (since he tends to drop and spill things a lot) and, gasp.... 3) sweet drinks.

Something I'd previously avoided like the plague.

Jam's drink of choice is Vitamin Water Zero which comes in a variety of flavors and which uses a stevia-based sugar substitute. I hate that he only wants to drink something sweet. And I'm too scared to look up the health facts for Vitamin Water Zero and the Truvia it uses because I'm sure it's not the healthiest product in the world. But the fact is he's willingly drinking so much more now than he ever has in his five years. Hopefully, after we get the constipation cleared up for good, we can start weaning him off it and back to regular water.

Wish me luck!

Dyspraxia and Detailed Therapy Costs

Jam is currently 5 years old. 

I thought I had posted this way back in April, but just now saw it sitting in the Draft folder. Which is what I get for not actually looking at my site after I post something- oh well!

Here are the details of our therapy costs in case they're helpful. Though now we're in August and, since then, we've dropped occupational therapy and soccer so our costs are somewhat reduced right now. Though I've already got something else in the works, of course....

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In a recent post about Jam's various therapies and activities, I vowed details on costs and here they are, along with how we manage to afford it:

Occupational Therapy- twice weekly   We are so extraordinarily fortunate to have good insurance coverage. For neurodevelopmental therapy, they cover up to 60 appointments a year until Jam turns 7. Each 50-minute OT session cost is $125 and we pay a $25 co-pay per session. Unlike previous years, this year we won't be paying out-of-pocket for additional sessions past the covered 60 as our therapist is retiring.

Cost: $25 x 60 sessions = $1,500 out-of-pocket annually


Hippotherapy- once weekly   Due to the generally high cost of this service, our therapeutic riding center generously subsidizes every student, bringing our cost down to $115 per 50-minute session.  I'm not even sure any insurance carrier covers hippotherapy. Ours doesn't but it would cover the physical therapy portion of our session (roughly $34) though it would count against our 60 NT appointments a year so we don't run this through insurance.

Cost: $115 x 42 sessions= $4,830 out-of-pocket annually


Integrated Movement Therapy- once weekly   $60 per each 45-minute, one-on-one session.  Definitely not covered by insurance, but worth it.

Cost: $60 x 48 sessions= $2,880 out-of-pocket annually


Soccer- once weekly   Offered through our local community center, sports classes are somewhere between $11 and $18 per class. We may switch up between soccer, tennis and t-ball throughout the year so I averaged it.

Cost: $14.50 x 24 classes= $348 out-of-pocket annually


Gymnastics- bi-weekly    Normally, $6 for a one hour visit. We attend on a very regular basis so I buy the 10 visit punch card in order to get three free visits to bring the cost down.  A great deal!

Cost: $4.62 x 24 visits= $110.88 out-of-pocket annually


Swimming- bi-weekly   Normally, $9.75 per visit up to 5 hours. Like gymnastics, we attend on a very regular basis so I buy the 10 visit punch card in order to get one free visit to bring the cost down. Another great deal!

Cost: $8.89 x 24 visits= $213.36 out-of-pocket annually

So there you have it- about $9,882.00 a year. Or $823.50 a month. Or $190.00 a week. Out. Of. Pocket. And that doesn't even include gas, wear on the car, holiday gifts, etc.  Sigh...

How do we do it?

Well, it's tight. My car is 10 years old. And, being dyspraxic with the attendant sensory issues myself, I loathe everything about shopping. So no shopping for me. (Thank the sibling gods for my sister and her hand-me-down clothing gifts for Jam and me!) Living in the already amazing place that is Seattle, we don't need to vacation a lot and because Jam has such a limited palate right now, we don't eat out much. Also, I recently started back working 10 hours a week at my 'before-Jam' job (which I love!) and it helps a tiny bit. And finally (and most sadly) our dog of 10 years died recently and that freed up a bit of money a month. So there you have it.

I look at this outlay of money right now as an investment against spending more, bigger money down the line. Hooray for early intervention!

If our financial situation changed for the worse and I had to make decisions on what to cut, here's how I would rank our current therapies and activities in terms of progress and value for the money for where Jam is right now:

1. Occupational Therapy
2. Integrated Movement Therapy
3. Swimming
4. Gymnastics
5. Hippotherapy
6. Soccer/ group sport classes

Hope that helps!

Dyspraxia, SPD and Kindergarten Options

Jam is 5 years old.

So Jam is now officially 5 years old and you know what that means- kindergarten time! I'd finally get a few minutes to myself in a day or be able to pick up extra hours at the bookstore or whatever. Endless possibilities!

Except that I knew when we dropped out of preschool way back when that we wouldn't be doing the regular ol' kindergarten thing 'on time'. But still, I like to stay optimistic and informed so I researched options.

Public School

We did that whole IEP thing through our district last fall and that cemented for us what I had already suspected- that we would need to find a better educational match for Jam than our public school system. The class sizes were too big, the available resources too small and Jam wouldn't be able to hack full-time days without amping up his anxiety. And anxious kids already have a hard enough time. Having gone through the public system myself, I knew a major part of his day would be spent fending off sensory chaos and figuring out how to survive until the dismissal bell. And that's a terrible way to spend time.

Which is fine because I'd always wanted to send him to the little private school up the street anyway.

Private School

I fell in love with a neighborhood private school years ago when I tutored some students from there for our library's homework help program. It embodied all of my favorite pedagogical ideas at the time: small multi-age classes, an interdisciplinary approach, differentiated instruction, inquiry-based curriculum. All the right buzzwords. I knew that if I ever had kids, they would be attending this school.

So earlier this year, we went to all the Open Houses and tours and Q and A sessions for the school. We talked to current parents and former parents and teachers. Our OT had even suggested the school as her own son had gone there. I was getting very excited. Sure, we'd have to spend the entire summer prepping a very unprepared Jam for a very long school day. And get his memorization of numbers and letters down pat. And get him writing his name and maybe some sight words. And get the potty-training all finished up. And drop all the therapies at summer's end. There was much to do if I was going to make this work...

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See what was happening there? I was getting way too excited. And way too wrapped up in the idea that I could shove my kid on to a normal schooling timetable and in a normal schooling environment. And then I crashed back to earth and realized that if it was going to take so much work for this to happen, we just weren't ready.

The nail in the coffin?  The last Q and A session where the school director, in response to another parent's question, kept repeating that this was 'not a special needs school'. Well, that sucks. Because I have a special needs kid so....

Redshirting

So if Jam wasn't ready for public or private school, another option would be to just hold him back a year, continue with his therapies, and keep working on some of those kinder skills in the hopes that he'd mature into readiness. And hope that his interest in letters and numbers and reading and writing and being told what to do all day magically appeared. Because it hadn't yet.

(Have I mentioned just how strong-willed my son is? And just how uninterested he is in doing uninteresting things?)

Of course, he did just turn 5. Maybe he just needs another year to get some skills and confidence and interest (and compliance) under his belt before heading out into the world of school. Except that I have a feeling another year isn't going to make much difference for what's going to happen to dyspraxic, dysgraphic, SPD, perfectionist, strong-willed Jam once he gets into a schooling environment. I do know it's not going to be pretty for anyone involved...

Homeschooling

So suspecting strongly that a formal schooling environment was not going to be ideal for Jam, I started to freak out. Like, major freaking out. And, of course, when I'm freaking out about something, I arm myself with information. Lots and lots of information. And there the answer suddenly appeared...

Homeschooling.

And I can't believe it took so long to have this epiphany because I wasn't new to the concept of homeschooling. In library school, about ten years ago, whenever we had papers and projects involving a demographic of people using the public library system, I would always use the homeschooling population. I had done tons of research into various homeschooling methods and styles, resources, local groups, pros and cons, everything. And I still had it all.

And I knew right away I had found the best choice for us.

The Highly Sensitive and 'Choose Your Own Adventure' Books

Jam is currently 5 years old. 

Remember those 'Choose Your Own Adventure' books from when you were a kid?  I do. Well, actually, I don't. Not really. I know that I've read them all and I know that I loved them all. Because I remember my feelings and emotions about things well. But I don't remember anything more about them than that. No plots, no specifics, nothing. Dyspraxics are notorious for short-term memory issues but I think there's something additionally wrong with me. Not much makes it into short or long-term memory. But that's a whole other post.

Anyway.

Working at a bookstore has it perks and I was recently able to pick up the first twelve books in the original 'Choose Your Own Adventure' series. Before they even hit the shelves. They were used copies and in awesomely pristine condition. A few months ago, Jam and I had gotten Space and Beyond (#3) from the library and he had loved it. I read it to him and he got to make all the decisions and he made great decisions and it all ended happily. So today we did #2 in the series, Journey Under the Sea.

I'm just going to stop here for a minute to preface this by saying that Jam loves all things deep sea exploring and action and adventure and sea creatures and submarines and, yes, the idea of finding the lost city of Atlantis. And all of those things are in this book. And Jam's also at a big stage right now where he wants to be in control of everything that happens to him (which, while age appropriate and awesome, is also kind of annoying).

Adventure and control. Basically, this book was a perfect choice. In theory.

In reality, not so much.

In reality, Jam is a cautious observer. In his imagination, he's an invincible risk-taker. And in our Journey Under the Sea adventure, his risk-taking decision-making led to demise right off the bat. Jam, within pages, was shark dinner.

And Jam was not happy. Actually, 'not happy' is a major understatement. Jam was inconsolable. So here we are doing all of this in our tiny cramped bathroom on the potty (we're dealing with encopresis right now) and huge tears are rolling down his face and he's crying and yelling (in between gasps for air) that I'm the worst person in the world for ever bringing this book home. And then he banished the book forever from the premises. I think the fact that I was laughing hysterically about having just been 'eaten by sharks' made everything worse. But I couldn't stop laughing. Even after he starting bawling.

Poor guy!

And that's when I realized that Jam must still be highly sensitive. I mean, I know he'll always be a highly sensitive kid but I had kind of forgotten about that because it had been a long time since he'd seemed 'sensitive' about anything in particular. When he was younger, we'd have to turn off TV shows right before the credits rolled because the ending of things made him sad. And sad music made him really sad. And sad things happening in sad stories made him extra sad. But he hadn't seemed affected by those things anymore. Or rather, it seemed that he had shifted his sensitivity response from sadness to righteous indignation aimed specifically at the bad guys on his superhero shows or at unjust characters in our story books. Until now.

Thinking through everything later, I still couldn't have predicted his reaction would be so visceral. It was a surprising and much-needed reminder that my kid still has highly sensitive tendencies even if he has been developing good coping skills. He's also still pretty young. Sometimes he seems so sophisticated and mature that I forget he's only just turned five.

Another thing that came out of this was an old memory of mine. Well, again, not a memory, per se, but one of those strong feelings about the Choose Your Own Adventure books when I was reading them decades ago. And that is the feeling of anxiety. Overwhelming anxiety in every decision. All the minutes I spent mulling over every variable to make the best decision on each page. I probably spent more time getting through a book than it took to write the book! And I remember the failure I'd feel when I'd get one of the less than optimal outcomes. And then I'd start the book over, determined for the desired ending. I know the books were supposed to be fun, and they were, but I had really strong perfectionist habits growing up. It was a love/hate relationship I had with these books.

I still think they can be great fun, though. And I know that Jam will enjoy them when he gets older and is more emotionally prepared for them as we work on his own sensitive and perfectionist nature. Until then, they are safely stored away. But I also need to be careful because when Jam gets spooked by something he can hold the fear of it for a long, long time. So we're getting back on the horse quickly, this time with Choose Your Own Adventure for Young Readers, with more age-appropriate levels of action and decision making.

Except I think we'll be skipping #7- Return To The Haunted House. I'm not even going to mess with that one...

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.

Dyspraxia, SPD and Montessori-Inspired Preschool

Jam is currently almost 5 years old.

I posted here about a decision we made two years ago to have Jam continue on in his cooperative preschool. In short, a coop preschool with 20 kids and 11 working adults meeting four times a week is not ideal for a dyspraxic, SPD kid. Or, at least, not my dyspraxic, SPD kid. And, honestly, other than playing at one or two activity stations, he was rarely excited to be there.

But, in my goals to 'mainstream' Jam and help him develop those 'societally requisite' social skills, I decided we'd spend another year there. It was too much of a benefit that I could always be in the classroom to help Jam navigate the chaos. You really can't do that anywhere else. A few months in, though, I knew we wouldn't be continuing in the coop system come next fall. It was amping Jam's anxiety and slowing his progress. So when the next 'School Application Frenzy' season opened for fall placement, I toured a Montessori-inspired preschool that I really liked. That seemed like a great match all around.

And I liked it so much, I dropped us out of the coop preschool immediately and moved us to the Montessori-inspired school.

Though it was a mid-year move, the transition went smoothly. Especially for transition-phobic Jam who actually looked relieved when I told him we were leaving our coop. At the new school, I stayed in the class with him for a few days. Then I stayed in the school office for another few days so Jam knew I was at least on the premises. And then, after that, he was fine being left there by himself. The entire approach the school had with Jam, and all the kids really, was very gentle and low-pressure. He had two awesome teachers (one of whom I think he wanted to marry) and his classroom only had 9 other kids and was a small, contained room. Much less chaos for an SPD kid.

It was a perfect school by most standards, yet not perfect enough for our needs. I would often arrive early just to secretly observe Jam in the class or on the playground. He wasn't self-directed at all, choosing to visit only one or two of the various 'work' stations in the Montessori classroom, even when encouraged by teachers to try others. Instead, he spent his time coming up with a thousand and one imaginary games involving the work station manipulatives, but never use them for what they were intended. By the end of class, his eyes would glaze over and while it turned out he was actually paying attention, he would 'appear' as though off in another world. And the playground- well, motor skills not being his thing, he would just wander around aimlessly while all the other kids played chase and climbed on things. Occasionally, on a good day, I'd find him in the sandbox.

And, keeping in mind that class was only for a few hours, he would still need a lot of time immediately afterwards to decompress, just like at our old school. So we'd just eat our packed lunch and walk the grounds having 'adventures' until he was ready to transition to the car to go home for his nap. And as annoying and time-consuming as that decompression time was, it was a necessity to avoid daily afternoon SPD meltdowns.

I was worried Jam was starting to get really run down. Occupational therapy once and twice a week plus three preschool classes a week. Plus play dates and park dates. He wasn't getting enough down-time. And this kid needs so much down-time. We eventually dropped a day at preschool, moving to two days a week, but Jam was just still so tired. Preschool was taking a lot out of him.

When time came to decide on plans for the following year, the year everyone else was doing Pre-K programs in preparation for kindergarten, we chose to not continue with regular preschool.

Instead, I decided to see if Jam would qualify for the school district's developmental preschool program.     Something I'd been avoiding like the plague...

Dyspraxia, SPD & Preschool

Jam is currently almost 5 years old.

Recently, I mentioned that as Jam approaches that age when schooling traditionally begins, I'm getting anxious and panicky. Well, the reality is that I've been anxious and panicky for the past two and a half years since his diagnosis, knowing this time would eventually come. And here it is.

Originally, I had thought that enough early intervention would allow us to mainstream Jam into regular kindergarten and 'on time'. Aahhh, such sweet naiveté...

It was interesting to re-read this post I wrote two years ago about our preschool situation and the decisions we made. 

Lots has happened since then. 

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Originally posted to SPD Blogger Network on June 6, 2011. 

Ugh- this day has finally arrived. Today is the registration deadline to continue with our cooperative preschool program in the fall. I’ve thought about this decision so many times over the school year and I get a headache every single time. But it’s now down to the wire. I need to take a pre-emptive Advil, hand the kid off and figure this thing out.

I live in a big city with an excellent cooperative preschool system run through our local community college. And, believe me, I know I’m fortunate- because the program relies on parents working part-time in the classroom with the teacher (as well as other responsibilities), cooperative preschools aren’t an option for many, many folks. By participating, I even earn quarterly college credit. And the best part is that Jam and I have been able to share this experience together. If we continued, it would be our third year in the co-op system. I think it’s a great program and recommend it to every parent I meet, but I’ve been thinking it might not be the best option for SPD kids. Or maybe just not my SPD kid. 

It was obvious right away Jam was one of those ‘slow-to-warm’, cautious babies so when he turned one I enrolled us in a weekly toddler co-op class hoping the safe and supportive environment would help warm him up to new people and experiences. Other than not leaving my side for more than five minutes during the entire year, he seemed, not great, but OK with it. So I signed us up for the next level for two-years olds. We had even continued through the summer so we wouldn’t have to transition back into the routine, though our new school would be at a different location with a whole new group of kids and meeting twice a week. 

One of the major goals we work towards at the 2-year-old level is for kids to start gaining experience in independence and being on their own in class away from mom or dad so parents work one day a week and drop off the other day. We have three weeks of school left and I was just able to successfully drop Jam off last week. It’s taken 30 weeks to get him here and now we’re getting ready to break for the summer. I’ll have to start over again in the fall with hopefully a much shorter transition period. 

So why did it take so long? Well, our classroom space is great- spacious and bright. Maybe not so great for kids who rely on contained spaces in order to cope with constant sensory assault. And, as you can imagine, the noise level of 20 toddlers plus 11 adults can be epic. Also, those 11 adults rotate every other class which is hard on my consistency-loving child. (Again, just another one of those attempts to predict and control his surroundings.) Plus, with his SPD-related motor delays, he’s pretty wary around other kids, being as ‘unpredictable’ as they can be. And we won’t even talk about the transitions from Free Play to Circle Time to Snack to Playground to Closing Circle. The kid is exhausted by the end of the 2 hour class. Come fall, the classes will be four times a week and 2 ½ hours long!

So why would I do this again? Jam's occupational therapist and I agree that the most comfortable setting for him would be a small, multi-age, in-home daycare; quieter, more constant, more flexible transitions. I don’t know where you live but here demand is much greater than supply. Much. Greater. He’d be in kindergarten before we got called off a waitlist! And the cost for said care? More than I can afford. 

So why put him anywhere? First, he’s going to be 3 soon and we need to continue building his world experience and coping strategies. Second, I’d love to go back to work. When Jam came along, I told my boss I’d be gone for a year. Two years, maximum. And now we’re heading into year three with no end in sight. Have I mentioned that I loved my job? I think I’ve reined in my former workaholic ways, but still, my soul needs to work. And, no, playing ‘Fire Engine Rescue’ and ‘Galactic Explorers’ all day does not count. (Though it is seriously hard work!)

So how have I decided, after all of this, to continue with co-op? Well, familiarity and consistency go a long way with Jam. Our class will be in the same space we’re in now, with the same routine and with at least 12 kids from his current class. There are many parents who already know and care about him. More importantly, I’ll be able to continue watching his progress closely and to support him where he needs help. I feel a bit panicked that in a few short years, he’ll be entering a more traditional setting where I’ll have less input and opportunity. 

So it’s not the best place for Jam. And it’s not the best place for me. But it is the best place for ‘us’. 

Books, Ebooks and Bookstores, Oh My...

Just in case you were wondering, my life isn't all about dyspraxia and SPD, you know!

This morning, I was reading to Jam from our huge pile of library books when I noticed the picture book we were reading was also available as an ebook. A kid's illustrated picture book in ebook format. I was kind of taken aback. I just couldn't imagine Jam and I pouring over a picture book on the computer screen. I completely understand using a screen for distraction and entertainment, say... at the doctor's office or a restaurant. Believe me, the iPad is something we rarely leave home without on long car rides. But there are so many great interactive book and game apps, I couldn't imagine why I'd ever download a picture ebook to share with Jam.

I do have a nasty little secret, though.

I'm a bookseller. I work at a bookstore. A wonderful, huge, successful independent bookstore. A bookstore filled with tens of thousands of real paper books.

But, for myself, I only read ebooks.

Isn't that terrible?!

It's sad but I can't imagine reading a real print book for pleasure now. The thought of lugging around a book on top of everything else I have to haul... it's just too much. At least schlepping around my iPad gets me access to email, the internet and dozens of apps. And tons of books. All at the same time. And all for the same price in weight.

Now, I know tons of people who LOVE 'real' books. Being a bookseller, I work with those people and sell to those people every week. The heft of the book, the texture of the paper, the physical act of turning pages, the endorphins released after a new acquisition for the collection.

But me, I'm more a 'content' girl. I want the content and don't care so much about the packaging.

I have noticed two downsides to ebooks for me, though. One is that because I'm not constantly picking up and seeing the book I'm reading, I can never manage to remember the title and author of what I'm reading. In fact, I don't even see the jacket cover on my iPad and probably wouldn't recognize the actual book if I walked by it at work. Not great for a dyspraxic bookseller with memory issues.

The other downside is that I never have a good idea of where I am in a book. Am I half-way done? Am I coming up to the end? It actually affects my reading of the book, not knowing where I am in the story. I could easily find out on the iPad- but I don't. And I hadn't truly realized before how much information the book as an actual physical object conveys. There are times I miss the print format.

Just not enough to actually go back to it.

The one exception is when I'm reading for in-depth information rather than for pleasure. Non-fiction reading has traditionally been hard for me. Mostly fact-driven with no story and little personal relevance, it's hard to remember and synthesize any of it. And for whatever reason, screen print is even worse in terms of retention and recall. It just doesn't imprint on my brain very well. I found this out recently when I bought Cindy Gaddis' The Right Side of Normal, about right brain dominant learning, in ebook format. Very excited, I started reading it right away. And couldn't remember any of it the next day. So I had to go buy the book again, in paper format.

Much better the second time around!

Advice from the Future

Jam is currently almost 5 years old.

Recently, I had a fortuitous opportunity to talk to a kid with very similar diagnoses and personality traits as Jam. Except this kid is 20 years old. It felt like talking to Jam 15 years in the future.

First off, he was surprisingly articulate, self-aware and forthcoming for someone his age. I talk to a fair number of young adults who are nervous or less than excited to be talking to an adult. So this was encouraging! I wish, though, that I had been better prepared. I don't do anything well 'on the fly' and would have liked to come up with a list of questions or something to make the most of this opportunity. But I'll take what I can get and without complaint!

We spent most of our time talking about his schooling experience, a topic near and dear to my panicking heart as Jam approaches school age. And it happens that this kid attended the same private elementary school I've been wanting Jam to go to. And he'd had many of the same early interventions Jam has had and many of the classroom accommodations I expect Jam to be given.

And what he had to say about classroom accommodations was this: they had been helpful, but at a point, he decided that he wanted to have friends. And he felt in order to make those friends, he needed to get rid of the classroom accommodations. That they were setting him apart. That they were stigmatizing. He knew that he would have to work harder without accommodations but that the motivating factor to work harder was that chance to have friends. His advice to me was that if Jam ever asked to stop using accommodations in the class, to let him.

One thing I wanted to talk to him more about was his history of depression and anxiety and drug use (some prescribed and some not) which he was very candid about. These are issues I'm particularly concerned about for kids with dyspraxia, SPD and learning disorders. These issues are, in part, what inspire me daily to lay a good foundation for Jam now in the hopes he chooses to not go down that path.

But the good news is that this kid has fought through all of that and has really come into his own. We ran out of time to talk more about drugs and all that scary stuff because we were too busy talking about the exciting, coming-of-age adventure that he worked hard to put together and was about to embark on. Like, literally- he was on a flight out of town within hours of our conversation.

I'm very lucky and grateful to have had the chance to talk with this kid. He told me useful things and provided an interesting perspective on some issues I hadn't previously considered. And I wish him the best of luck in his new venture though, really, I don't think he'll need it. He seems to be doing great all on his own.

SPD, Sun & Scrambled Brains Update

Jam is almost five years old. 

Hahaha.... it was a little over a week ago when I posted this about what happens to Jam in direct sun. And guess what happened?

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Still vacationing in Leavenworth, last night we decided to dine at a hip burger joint decked out with all sorts of hip artwork on the wall. Right off the bat, Jam lasered in on this print. It's called London Face Punch by a guy named Jeff Lamm. I think it's pretty cool and on any other day so would Jam. He usually loves Godzilla, monsters and other scary-type stuff. But today was not any other day. And Jam did not think it was cool. At all.

I should probably set this up by mentioning that a few hours prior to dinner, I had walked in on Grandpa extolling the virtues of the hotel's outdoor swimming pool to Jam. The outdoor swimming pool sitting in direct 80 degree sun. The outdoor swimming pool with lots of people and noise.  I should also mention that Jam had already had his sun ration earlier in the day at the local fish hatchery. So I figured that, for this day, we were done with the sun.

And, to be fair, this hotel has two pools- one outdoors and one indoors. And the indoor one is the one we've always used because we go swimming all the time when here and we visit year-round. So it's not like the kid was missing out on swimming fun.

And, of course, after Grandpa had talked up the awesome outdoor pool, that's all Jam could focus on. Needing to go swimming right that minute. Needing to go swimming right that minute in that pool. There was no talking him out of it or delaying it or anything. And, 'it's vacation, after all'. So, against my better judgment, we went swimming. And it was gorgeous outside. And the water was nice. And it was fun. And all seemed well.

Until London Face Punch. As soon as we sat down at the table, I recognized that look on Jam's face. The look I hadn't seen in so long. The crazed, yet zoned out look that meant I would be dealing with this for the next few hours. He couldn't stop staring at the picture. I tried to talk to him about it. He said that the picture was 'scary, but fascinating' and he couldn't look away. Like a car wreck on the side of the road. So we moved outside to the deck to eat. But the picture and the monsters in it were all he could talk about and he barely ate. He talked about how we could never come back to the restaurant because of it. I lied and told him that all the artwork was for sale, like in our favorite coffee shops, and that it would probably be sold the next time we came to town. He talked about all the people in the imaginary town getting smashed. I lied and told him that the people had evacuated the town before the monsters in the picture came to destroy it. He talked about why the three monsters were fighting. I lied and told him that the one monster was a hero and attacking the other two to save the city. He wondered if the entire town was going to be destroyed. I lied and told him that Godzilla was on his way to kick some monster butt.

And, of course, none of it worked.

Afterwards, we came back to the hotel and it was all he was talking about so I decided to try taking the mystery out of the art. I thought that might break the loop of obsession he was stuck in. I looked up the artist online and told Jam all about him, how he used markers to draw his art, how he was in a music band and how he designed t-shirts. And, amazingly, there on the About page of Jeff Lamm's website was a picture of him and his little girl. We talked about what she was wearing, what she probably liked doing, how her father was using his art to make a living to take care of her. Anything to take the 'scary' out of the monsters. And, finally, he did seem to calm down a bit. And every time he mentioned the 'monsters in the picture' the rest of the night I reminded him to think about Lamm's little girl in the brown and pink coat instead. And he finally kicked off to sleep.

This is just Jam's SPD brain on too much sun. Which isn't very much sun at all. He doesn't get like this any other time. No matter how ill or tired he may be, it isn't like this. I'm absolutely sure that if we hadn't gone into that sunshiny pool, he would not have had such an intense, immoveable reaction to that picture.

I could have (and maybe should have) put my foot down and insisted on the indoor pool. But, you know, sometimes it's good to re-test the waters, so to speak. To measure where Jam currently is in terms of needs and ability. And right now, it appears that Jam still needs his sun exposure limited.

This morning, he woke up all refreshed and happy, done with monsters. And, as luck would have it, it's raining. So we're all good here today!

Vacations with SPD

Jam is almost 5 years old.

So here we are, vacationing with the grandparents for the next few days, in the cozy quaint Bavarian-themed mountain town of Leavenworth, Washington. I have mixed feelings about these kinds of 'vacations'. They're a lot of work and I'm more exhausted by the time we get home than if we hadn't gone anywhere at all.

I know you know what I'm talking about.

The one great thing that comes out of these trips is that Jam kind of becomes a different kid for a few days. With his grandparents as an audience, he acts more brave, energetic, outgoing and independent than he normally does. And he is more willing to try new things, like the meatballs and pot roast at last night's restaurant. Normally, at home, he's not as flexible. I think vacations are a short-term way for him to try on another hat. And it's really nice to watch. I wouldn't begrudge him the opportunity.

The downside, though, is that Jam's much-needed routine gets shot to hell. Our carefully constructed routine so he stays regulated gets thrown right out the window. Towards the last day, he'll be so out of sorts he starts acting whiny and demanding and inflexible. To me, this seems understandable, and moreover, entirely predictable. But nobody wants to listen as to why he might be behaving this way. I guess it's easier to think that he's just choosing to act 'bratty'. It really annoys me. I gave up a long time ago trying to maintain some semblance of routine while vacationing. An uphill battle, all I ever got was, "It's vacation- let him do this" and "Let him do that- he's on vacation!"

That's all great, folks. I just don't want to hear about it when Jam-asaurus Rex makes his appearance. And I promise you- he will be making an appearance...

But, you know, it doesn't end there. It will take Jam three or four days to recover and settle back out to his normal self after we return home. No one else seems to worry about that because, well, the grandparents get to go back home and daddy gets to go back to work. But, sitting here right now, I know what's coming. And again, given the circumstances, it's totally understandable and so entirely predictable.

In the end, though, it doesn't really matter. It's great to watch Jam spending time with his grandparents and swimming in the pool every day and having fun and adventures and being his awesome self. Regardless of what's in store for us next week, today I wouldn't have it any other way.

Adult Dyspraxia & SPD

I am currently 42 years old.

I write a lot about Jam's dyspraxia and SPD because that's where my mind always is. And, honestly, I don't spend much time thinking about them in regards to myself.  Probably because I've been living with them for so long now that I've developed my own coping strategies, workarounds and compensations over the years.

My own diagnosis is technically informal. After coming across dyspraxia (or, Developmental Coordination Disorder) in my research for Jam, it was so immediately obvious they were talking about me, about every phase of my childhood. I talked at length to Jam's occupational therapist and my own doctor and it was agreed that going through the hoops and expense of testing to get a formal diagnosis would be a waste of time and money unless I wanted to do therapies or get accommodations, which I don't.

I think there are lots of folks in this boat- people who have no idea about their own condition until their child gets diagnosed and the proverbial light bulb clicks on. Do I feel it's worth it to have the label but not the diagnosis? Yes- it's relieved me of many things I grew up feeling were wrong with me. It is an explanation for why things have always seemed harder for me to do than most others. Why some things take longer for me to learn. For why I get so overwhelmed in crowds and chaos. For why I always feel so self-conscious. For why I always get lost. For why I hate last-minute changes in plans. And why I have really ridiculous memory issues.

I would characterize my current level of dyspraxia and SPD as mild in its effect on everyday life. Not everyone in the world has motor and coordination issues, but many have sensory likes and dislikes. It's not Sensory Processing Disorder until it actually interferes with daily living. When I was younger it did and now that I'm older it doesn't. As much. I eventually learned to ride a bike, know my left from right, drive a car, and tolerate water on my face.

I just came to all that stuff really, really late compared to everybody else. Unfortunately, the toll on self-esteem and confidence was pretty big, resulting in high anxiety and compulsive behavior. I feel I have those things pretty much under control now except in times of high-stress. Which is why I go to great lengths to live as low-stress as possible.

These are some of the ways dyspraxia and SPD still affect me:

* I bruise myself daily because I somehow can't make it around furniture or through doorways successfully. Which is why we adhere to the 'minimalist' style of decor.

* I stay especially mindful when handling glass. Because I drop a lot of stuff. A lot of times a day.

* I still have no clue how far away 30 feet is or how tall anyone is.

* I'm so verbally inarticulate, it's crazy. Everything just gets jumbled up. So I try not to talk.

* I still haven't managed to increase my workout weights above 5 pounds. Damn you, hypotonia!

* Once I exit off the I-5 North freeway, I suddenly don't know where 'north' is.

* I can remember 2.5 steps in a list of instructions. If you want me to do something involving three steps, you best write it down.

* My hand still cramps if I have to handwrite more than a paragraph. Thank the gods for computers!

* If you want me to learn something new, you can't just show or tell me how to do it. You have to relay step-by-step instructions as I'm actually do it. And then I have to immediately do it again by myself. This is time-consuming.

* It takes a lot for me to energize and get going. So I try not to stop because it's just so hard to get up and going again.

* What I thought was five minutes passing... was actually fifteen. 

* I still bite my nails when I write. It helps to draw out the tangle of thoughts. Which means I'm biting them right now.

See- that could all be a lot worse!   =)

SPD, Sun and Scrambled Brains

Jam is currently 4.75 years old. 

Yesterday afternoon, towards the close of a stunningly sunny weekend, we were winding down with a happy little iPad game to help mentally 'regulate'  when Jam started crying over a trash can.

Yes, a trash can.

Actually, it was an image of a trash can and it was on the sticker reward page of his iPad game. The idea that his hard-earned electronic stickers might ever, even accidentally, end up in the electronic trash can was overwhelming to him in that moment.

A bit crazy? Yes. A bit unexpected? No.

Did I mention the stunningly sunny sun?  We're heading into what I call the 'Season of Scrambled SPD Brains' around here. When the sky goes cloudless and the sun comes out for more than two days here in Seattle, my kid's brain gets all scrambled. He becomes uncharacteristically whiny, cranky, needy, extra sensitive, short-tempered and uncooperative. He'll make crazy requests and hold very incoherent conversations, sometimes with himself. And we see a bit of backslide in any recent progress.

Fortunately, by now, we've gone through this enough to know what to expect and how to handle it.

Jam's first year of sun in Seattle didn't matter. He had just been born and five weeks early so we pretty much cocooned up in the house, missing the summer season. The following summer, I thought it was the heat that made him all crazy and cranky so I limited his time in the sun and he settled out.

The summer when he was two it was a mild summer and not that hot. Yet he was still having crazy days. And on sunny winter days, same thing. I finally had an epiphany that after he spent 20 minutes in direct sunlight, regardless of heat, he would later get extra sensitive and extra crazy, his thoughts scattered and slightly manic. So, as beautiful as it was out, we began to limit our time in the sun.

Which was kind of hard because our occupational therapist assigned us the task of going to the playground every day for motor and social skills practice. So we just went early in the morning before anyone got to the park or late in the afternoon after everybody went home. Not so great for the social skills practice part. But, hey, at least we got to play in the shade!

Last year, I forgot all about the SPD/sun glitch until Jam had been 'scrambled' for about two weeks. I thought he was just going through some crazy developmental jag until I was re-reading one of my older Jam journals. Ooops!

As usual, he settled out a few days after I adjusted our time in the sun. But just so I didn't forget for this year, I wrote it on the calendar an entire year in advance- "Beware the SPD Scrambled Brains of June!"

And so now I'm prepared. We hung a tarp over the back deck so there's an outdoor play space that's shielded from the sun. We even managed to make it look shabby-chic and only a bit shanty. And we use the neighbor's shady front yard to play in since it's attached to ours and they like having kids in their yard since theirs are grown and gone. Plus they have a great big leafy maple tree to play under.

We'll also see where Jam is on wearing hats and sunglasses and sunblock this year.  In the past, he has been really inflexible about having anything on his head or on his face which I totally understand because I hate it all, as well. But you never know- this may be our year for some progress on that front!

Some of the other things we do are morning trips to the playground, indoor sports classes only and most playdates are in the afternoon when the backyard is most shady. We'll just continue to limit how long we can be out in the direct sun. Which isn't a bad idea for sunblock-refusing, fair-skinned children who burn like butter anyway...

As for the poor crying child and the trash can, well... I tried all the usual tricks. Distraction, logic, bribery with popsicles. Nothing worked. Of course. All he needed was to be held until he cried it all out. And then, after all that, with the sun going down, he wanted his popsicle. Of course.


**************************************

A little over a week and a half ago, I posted an update here.

Tree Fu Tom Reviewed by a Mom with Dyspraxia

Jam is currently 4.75 years old. 

Have you heard of the animated series Tree Fu Tom that started airing last fall in the UK?

Here's the official blurb:

Tree Fu Tom is about the amazing adventures of a young boy called Tom who, with the power of ‘movement magic’ called ‘Tree Fu’, can transform into a tiny but mighty magical super hero and travel to a wondrous enchanted kingdom called Treetopolis that exists in a tree in his back garden.

The series features exercises that have been specially developed to promote movement and co-ordination development in children with dyspraxia and similar conditions.

So, of course, I'm interested. Especially since it's aimed at 4-6 year olds and I've got one of those!

And, of course,  I got so impatient for it to air in the US awhile back that we bought used DVDs from England. But you don't have to because now Tree Fu Tom is playing on PBS Sprouts and Amazon Instant Video and iTunes. We don't have money for fancy cable channels like PBS Sprouts or to pay $1.99 an episode on Amazon or $2.99 an episode on iTunes. So I'll just stick with my used DVDs, thanks.

By now, I've seen the first 13 episodes a million times. Well, really, like four times each. It just feels like a million. But still- that's at least 52 viewings and you'd think I'd have some concrete opinion about Tree Fu Tom by now but I don't.

The graphics are nice. The characters are fine. The stories are cute. I don't really care about that stuff. I care more about it's ability to get my low-energy son motivated and participating in the 'movement magic'- those specially developed exercises for dyspraxic kids.

And I got a bit worried when, after the 24th viewing, he was still just watching the episodes and never engaging in the exercises. I could see why, though.

The initial exercise sequence, where the kids 'turn the magic on' is made up of fast, complicated moves set to electro-beat music. Hell, I can't even follow them! Maybe if they would just cut a few moves, slow the distracting music down and give a little more time between steps, I'd have a chance. Dyspraxics tend to have processing issues and need a little extra time to think and execute between moves.

The rest of each episode's exercise sequences involve the kids creating 'Big World Magic' to help Tom solve some problem. These are better. There are fewer steps and they're good ones- crossing the midline, stretching, balancing and all sorts of uncomfortable stuff for dyspraxics. But made fun! And the timing between moves is just right- enough time to mentally process the next step and physically do it, but at a challenging pace. And, most importantly, they run through the sequence twice. Repetition is key in the world of dyspraxia!

Now there was one episode in particular, "Fungus Among Us", that Jam would just watch over and over intently. (Lord, if I never see that episode again....)   And with Jam, there is always a method to his madness. There's a reason for everything he does. And I began to suspect that he was just watching the moves over and over and trying to lock them in his mind before attempting them in the real world.

And sure enough, one day he climbed off the couch and starting doing them. Not perfectly or smoothly or refined in any way because, well... he's dyspraxic. And he's four. But it was very awesome! And now when the show's on, he jumps around and performs "movement magic" with Tree Fu Tom. And he has a good time doing it.

So, all in all, it appears Tree Fu Tom has been a success in our home. It pairs well with one of my favorites,  Bo on the Go, which we watch through Netflix and which does a great job at getting kids moving and doing simple, fun sustained exercises for improved skills and increased stamina and endurance.

By the way, here's a relevant article. It's called "How Tree Fu Tom Can Help Children with Dyspraxia".

Good News, Bad News and a Dilemma

Jam is currently 4.75 years old

So at today's therapy session, I got some good news and some bad news. And now have a dilemma.

I'm a 'bad news first' kind of girl, so here goes...

The bad news is that Miss S, the occupational therapist Jam has been seeing since being diagnosed over two years ago, is closing her private practice and moving across the country. The end of July is the end of therapy with Miss S.

Super sucky for us. Super awesome for her. She's spent 30 years in her field and wants to do something new. And she deserves it. And I'm genuinely very happy for her.

Still...

I was really hoping she would be around when it came time for my sweet little dyspraxic, dysgraphic, left-handed boy to learn handwriting. Because, due to my own dyspraxia and crazy spatial issues, I'm not sure how a strongly right-handed person such as myself is going to be able to do it. Thankfully, it's a little ways off.

The good news, on the other hand, is that I finally got a small sliver of validation for the work I've done in developing Jam's new motor skills-focused therapy strategy. Jam's been doing really well and making huge progress on so many fronts over the past year. And part of that strategy was to drop him out of preschool. Not a popular decision with some, including Miss S, who is a strong proponent of early education for social skills development, especially for special needs kids.

Given his dyspraxia and SPD, the problem for us was twofold: 1) Jam needs a lot of downtime to operate well and, with his new schedule, there wasn't enough time for everything, and 2) he'd already been experiencing high anxiety and stress in preschool settings over the past two years. And that high anxiety and stress would carry itself over into everything.

So, for me, it wasn't a hard decision. School had to go for now so that maybe he could handle and enjoy it more in the future.

And today Miss S. told me she thought I'd made a really smart decision a year ago in pulling him from school. That she saw the results that came from reducing his anxiety load and allowing him to spend more of his energy on learning to use his brain and body. Yeah!

And now for the dilemma.

Being the awesome OT that she is, she's using the next two months evaluating and placing her clients. Finding them new, well-matched services for their needs. So, of course, she asked me if I wanted referrals for two therapists, in particular, she felt would work well with Jam.

And I hesitated. Because I'm not sure, at this point, it'd be worth continuing with a new therapist. Or... not that it wouldn't be worth it, but that we could spend our limited supply of time and energy trying something else beneficial.

So I took the referral contact info and, waiting lists in this city being what they are, I should probably figure something out soon.

SPD and Co-Sleeping

Jam is currently 4.75 years

I don't even know where to start. The whole sleep issue, especially in those early years, was so miserable and exhausting that I don't really remember any of it. Of course, back then, nothing was making it into long-term memory so, being dyspraxic, I already knew to write it down or lose it forever!

And so I did. I kept a daily journal of Jam's first few years which ended up being real handy when his diagnosis time came around. And it continues today in the form of daily emails I send to his dad and grandparents so they can keep up on his days.

But back to the sleep thing...

It took Jam forever to go down at night. Hours of swaddling and pacing and rocking. The witching hour where he would cry inconsolably for no apparent reason from 5pm to 6pm daily. He'd wake if you tried to lay him in the crib. He'd wake if the car stopped. He'd wake through the night. He'd wake early in the morning. We went through countless variations of sleeping arrangements- co-sleeper bassinets, sidecar cribs, couches, mattresses on the floor. And in between all of that, countless variations in routine- no noise, white noise, no lights, night lights, epsom baths, stories, songs. Pace, pace, pace. Rock, rock, rock. We read all the advice, took classes and even hired a private sleep consultant.

When Jam was three, we tried weighted blankets and melatonin. He felt 'crushed' under the weight of the blanket and moaned that the melatonin was 'freezing his brain' as he involuntarily slipped under. We lasted three days before throwing the melatonin out.

He could never sleep on his own throughout the night. Knowing even the gentlest method of 'cry it out' was not for us, when he woke in the middle of the night, I would move into his room and sleep with him on his mattress. For three years. And this is how we all finally got some semblance of sleep. Albeit crappy sleep.

In hindsight, it all makes sense. His SPD brain took forever to wind down at the end of the day. His gravitational insecurity alerted him awake if suddenly shifted into a horizontal position. He always needed to clutch Matchbox trucks in his fists. To this day, he needs to be touching someone with his foot while sleeping to know where he is in space.

Our 'miracle cure' arrived one night when he was 3 1/2 and had come down with a bad cold. He was miserable and wanted to sleep in our bed- something he'd never asked to do before. And we agreed to it. And got the first full night of uninterrupted sleep ever. Ever. It's been more than a year now that Jam's been sleeping with us and we're all getting a good night's sleep. He falls asleep within ten minutes with me lying next to him and the only time he wakes in the night is when he feels sick and is about to puke. And, not surprisingly, it was right around then that we started seeing a less-anxious Jam make more progress on the skills front.

It's not all sunshine and roses. Our bed is a queen size and my husband is 6' 5". It took six months for him to adjust to sleeping on his sliver of the bed and to get used to a third presence. But he's the one  'oohing' and 'aahhing' over a sleeping Jam every night before cuddling up and closing his own eyes. It's definitely brought them closer. And the upside is that we always know when Jam has had a bad night of sleep for whatever reason and can plan the next day accordingly.

I know it won't last forever. I don't want it to last forever. One day he'll be back in his own room two feet across the hall in our very tiny house. Heck, one day he'll be in his own house. But until then, I sleep, safe sound and secure, next to the two most important beings on this earth to me.

Dyspraxia, SPD and a Child's Work

Jam is currently 4.75 years old

Traditionally, it's been put forth that a child's work is to go to school. But my son does not go to school. Instead, Jam's week is filled with various formal and non-formal therapies like OT, swimming, hippotherapy, gymnastics, yoga, etc. All of these, together with his regularly scheduled playdates with a few good friends, make up his week. And this week makes up his schooling. And while swimming and gymnastics and yoga all sound like great fun, in actuality, it's also a lot of hard work for him.

When Jam was younger, I referred to his occupational therapy appointments as 'play' because, from his point of view, that's what they were. Lots of fun and games. And, back then, I was still trying to get buy-in from him. Today, it still is fun and games. But as he's gotten older, I've been making the shift to praise him for all of the effort and energy he puts into his 'work'. His 'work' at therapy, at the pool, at the playground.

"You've been working so hard!'

"You did amazing work at Miss S's today!"

And here's why-

I want him to see that work can be fun. Too often, 'work' carries a negative connotation- that it's, by definition, not fun, certainly not to be enjoyed and not something we'd be doing if given a better choice. That's not an association I want Jam to make, especially as a dyspraxic and given that he's going to be working hard at many things for much of his life.

I also think that using the word 'work' helps get Jam in the mindset that, while much of his life is pleasant and fun, there are also times when he needs to focus and put in serious effort because, in the end, we're spending all of this time and energy trying to accomplish something very serious.

And, lastly, by acknowledging all of the time, energy and effort that he puts in-  I want him to recognize that what he is doing is hard work and that it is legitimate and real and that he should be proud of himself. To call it anything else would be to dishonor him.

Dyspraxia and Best Resources

Jam is currently 4.75 years old

As well as being a dyspraxic mom parenting a dyspraxic kid, I also happen to be a research junkie. And I have a big ol' fancy expensive Master's Degree in Library and Information Science to back that up. I have hundreds of sites evaluated, categorized and periodically reviewed for dozens of topics of interest. And, of course, one of those topics of interest is dyspraxia.

Much of what's available online is the general 'introduction to dyspraxia' stuff- what it is, symptoms, treatments, all that. Easy to find and very basic. If you're here, though, I'm sure you've found all of that stuff on your own already.

What I want to share are a few resources that have been exceptionally valuable to me by offering more details and in-depth info specific to dyspraxia.

CanChild Centre for Childhood Disability Research - out of McMaster University in Ontario, Canada, the CANChild site offers an amazing amount of solid information on Developmental Coordination Disorder (Dyspraxia), including research, measurables and printable educational materials for parents, educators and service providers. Another place to start is this online presentation. There's so much here I can't even break it down. I practically bookmarked every single page of the site. Plus, the layout is nice and easy to navigate.

Skills for Action- this is the site of a physiotherapist in Cape Town, South Africa with many years of experience. And she happens to go into detail about everything I'm interested in- dyspraxia, low muscle tone, the highly sensitive temperament, SPD and handwriting. And she includes many practical, useful ideas. The information presented here is what directly led me to switching our therapies focus from SPD to motor skills.  

University of Hull- Understanding Dyslexia and Dyspraxia- this is a pdf available online and geared towards incoming Hull students. Focusing on the cognitive aspects of dyspraxia, it discusses, in detail, typical strengths and weaknesses, especially in terms of learning style. A major find, this is one of my favorite resources. 

OT Mom Learning Activities- created by a former pediatric occupational therapist who specialized in learning disabilities and sensory modulation disorders. She's got so much here I've ended up bookmarking dozens of pages. Coordination, midline, fine motor skills, gross motor skills, SPD and handwriting. And she does a great job of explaining what all of these things are and why they're important. And she includes a ton of activities (with photos) that my kid will actually do because they look like fun and games. Which they are!

dysTALK- this site covers many of the 'dys' conditions- dyspraxia, dyslexia, dysgraphia, etc.  Many articles and short videos by experts (such as Amanda Kirby) plus community forums. And everything is separated out by the specific learning difficulty making for easy navigation. 

Learning Challenges Board at The Well-Trained Mind Community Forum- it is insane how much I've learned through the collective knowledge of parents at this forum. Information really hard to find elsewhere. Just do a keyword search within the forum for 'dyspraxia', 'dysgraphia', 'processing speed', 'memory', 'executive function' or what have you and plan to spend some time. I've lost many, many hours of sleep perusing this forum. 

My Experience of Dyspraxia- a girl named Izzy writes a post about her experiences growing up with mild developmental dyspraxia. What it affected, how she fared in school and where she is now. Her writing style is accessible and what she wrote resonated with me. A useful read if you're interested in what challenges may lie ahead for your kid. This was hard to find and I'm glad I did.

Mothering the Nuances- this is a blog about a young son's diagnosis of dyspraxia, hypotonia, etc. There are only 21 posts, ending in December 2011 which is really too bad. I normally wouldn't include a blog not currently being maintained but she has a great writing style and talks a lot about her son's schooling experiences which I am always interested in.

Sensational Kids: Hope and Help for Children with Sensory Processing Disorder by Lucy Jane Miller-   This is actually a book, not a site, but I included it because it's an important book. While there are a number of books out there focusing on SPD they don't often include much specifically on dyspraxia. This book discusses dyspraxia a lot and offers much in the way of strategies at home, at school and in the community. If your kid is dyspraxic, this is THE book.  (Note: I linked to the Amazon listing solely for the purpose of looking at customer reviews (like reverse 'showrooming'. This is most likely available through your library. Or, if you're poor like me, try to buy it used. Or please consider supporting your local independent bookstore.)

Lastly, because I'm always interested in the latest research, etc, every few months, I'll check with my local library's online health databases, like PubMed and Proquest Family Health using keywords like 'dyspraxia', 'developmental dyspraxia' and 'developmental coordination disorder'.  Jam is not on the autism spectrum but I've often found interesting research on autism with dyspraxia as a co-morbidity so I try to use a broad scope when searching. The information is still valuable.