8 Simple Rules for Teaching My Son With Cerebral Palsy

We are starting to get into the preschool scene and I felt I needed to write a letter that quickly described the approach we have to Malachi's cerebral palsy for his many new handlers. After I finished, I wondered how other people have approached their traditional teachers and therapists with the theories being promoted in this brand-new field of "Neuromovement." Remembering that the best way to receive is to give, here then are the suggestions I've outlined for our therapists.

To Malachi's preschool team,
Hello and welcome to our journey with cerebral palsy! Malachi is a bright and capable boy with a few serious motor challenges. As his family, we would like to share our philosophy and approach to these challenges, which at times may be different than what traditional physical therapists and doctors believe. Please read the following "8 Simple Rules" and if you have any questions at all, please don't hesitate to ask us!

1. Cerebral palsy is a brain disorder, not a muscle disorder
The approach is all about learning. I find it helpful to compare his gross motor learning to what I would experience with taking a dance class. Our belief is that it is not about forcing muscles and skeletal structures into a certain position. It's more like choreography. The reason he doesn't move the way we do is because he has different set of facts than we do. The key is making him aware of how he is using his body and encouraging him to imagine alternatives. If he can conceive of it, he will choose it because it will be easier and more comfortable than how he is doing it now. Trust in him to make the same decisions anyone would given the same facts.
2. Go from easy to difficult in every activity
Instead of just going into an exercise, try to start from something easy and build from there. Neurons are like trees — they start small and then get more and more branches. Each activity would ideally be structured this way for maximum benefit — start with something you know he can do well and build in small variations on the theme. This helps him feel more successful, in control and empowered but also helps build a relationship with you as a trustworthy person. Starting, as I've sometimes seen, with a very difficult activity when he's fresh and then backing off when he gets frustrated or overwhelmed teaches him the opposite lesson — that he is dependent on others for help and is more successful when he cries or gives up.
3. Avoid hand-over-hand
We believe that hand-over-hand doesn't teach him how to do an activity, only that something magic happens when the therapist touches him. He has to figure out for himself how to wield his body and that includes making mistakes.
4. Avoid pushing or "breaking" tone
Pushing against his muscle tone only increases the resistance and the effort he is expending. If Malachi is stuck in high tone, as sometimes happens with his legs, a good way to make him aware of this is actually to increase the tone by pushing with the muscle instead of against it. This increased pressure will make him suddenly aware that he is holding that muscle too tight and he will release it. "Breaking" his tone by pushing against it doesn't really teach him anything and is unsettling. We've all had the experience of someone pulling on us — our automatic protective response is to resist.
5. Encourage slowness
Things that are done quickly are done sloppily. To get a fully nuanced sense of what it is needed for an action to be done well, slowness is key. Avoid praising him for doing something fast, unless it's something he can do well. Speed comes with proficiency, not the other way around.
6. Assume competence 
Start as much as possible from the assumption that he has purposefully chosen to put his body in whatever position it's in. If he is slumped over in a chair, try to figure out what missing piece of information he needs to chose a more upright position. Or, simply be curious about why that position is desirable to him. Perhaps he can see better that way, or perhaps he is unaware that his hamstrings can help to stabilize him and he is tired of feeling like he's falling all the time.
He is not a "victim" of his cerebral palsy because CP is not a thing. It is only an absence of a thing. It is a lack of understanding of the rules of gravity, a lack of uniform sensations across his body and a muddled picture of the relationships of his body parts to each other. Designing activities that outline and deepen his understanding of these issues will allow him to learn more about his relationship to the world around him in a way that physically supporting him never will.
7. Go for internal motivations, rather than external
Capitalize on ways that Malachi is internally motivated. He will do a lot for numbers, letters and pretty much anything with a battery. Giving him external motivators — such as getting praise from you — is more likely to backfire.
8. Behavior and emotions matter
Since it's a brain disorder, psychological components are just as important as physical ones. He needs to feel empowered and successful, not controlled or inferior. Also, crying is like spasticity for him — instead of moving, he cries. Instead of responding to requests to move, he cries. It's important to help him move through emotional states just as much as through physical positions. 

As Malachi's full-time caregiver for the past three years, I know firsthand how difficult some of these rules are to put into practice and how sometimes other concerns trump them. We do not expect rigid compliance! We only ask that you be open to these ideas and how they can be incorporated into your interactions with Malachi. Again, if you have any questions at all, please don't hesitate to ask.
For more information about our approach, you are invited to read the amazing Kids Beyond Limits by Anat Baniel , "Your Self-Confident Baby" by Magda Gerber and "Parenting with Love & Logic" by Cline & Fay.
Thank you so much for your time!

What about you? Have you ever had to talk to your therapists about a differing viewpoint on your child's treatment? How did you handle it? I'd love to hear from you in the comments!

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Need a baby shower gift? Dark & Light: A Love Story in Black and White is a beautiful and insightful board book available here. All profits go towards my son's medical needs. 

Why Your Toddler Thinks About Her Body Much Differently Than You Do

It was Mother's Day and I was getting a massage — my first shiatsu massage. I still have no idea what the shiatsu technique is all about, but in talking to the masseuse she used the term "core awareness" and it stuck in my head as a sort of meditative chant for the rest of the session.

Core awareness. Core awareness. Core awareness. 

As adults, we think primarily of our extremities. We think of walking as "putting one foot in front of the other." Or we think of doing the dishes as something that is done with our hands and fingers. Or we think of talking as something that is done with our mouths. The reality is that our entire bodies are involved in each of these activities, most importantly our core — the spine that allows us to balance, bend, reach and gesticulate.

One thing I love about Malachi's form of therapy, ABM, is that it made me see for the first time how much our bodies are a part of our whole being. For most of my life, my body has seemed little more than a means of conveyance for my eyes and my fingers. I very rarely gave a thought to my posture and never to my "muscle tone" — a huge buzzword in the special needs community.

But muscle tone is visibly different in different types of people. Actors use this reality all the time to portray different types of people — from the rigid drill sergeant to the fluid dancer. How our brains have organized our bodies has a very real effect on the person we are because — as may come as much of a surprise to you as it was to me — we are our bodies. Your body is a physical manifestation of the YOU inside your head and has as much to do with your personality as your thoughts and dreams.

Core awareness. Core awareness. Core awareness. 

This tendency of adults to think of our extremities is reflected in all sorts of ways in how we talk to our children and what we give them words for. I've read probably a dozen baby books about the human body and only one of them mentions the back once. The pelvis, the spine, the neck, the sternum, the ribs and the abdomen are — just percentage-wise — a massive part of the human body and particularly the disproportioned body of a child. The vast majority of children, typically developing or not, master their spines long before they figure out their fingers. Yet, we have songs about ten little piggies and pat-a-cake and even "Dem Bones" that skip entirely over our core despite the vast number of powerful muscles and vital skeletal structures there.

Core awareness. Core awareness. Core awareness. 

It may sound like I am condemning adults for thinking this way. I am not. Expansion and contraction is a pattern repeated everywhere in nature, from the build up and erosion of mountains to the growth and decay of a cell. It is natural for adults, who are at the peak of their expansion, to focus on the very limits of their being.

However, this is not the child's perspective. I have spent hours watching both my children experiment with wiggles of their pelvises or twisting of their torsos. Rolling around on the floor with them, I have rediscovered the physical experience of childhood — banging on the floor with our powerful back and thigh muscles, the feet a mere afterthought, or arching our backs so that our heads pop up, the hands against the floor steadying us rather than providing the bulk of our support.

The child who walks with a big, soft tummy and wide legs is much more aware of her core and its ability to propel her through space than the adult with a rigid spine and an aching lumbar. We could take a lesson from her, rather than the other way around.

Feel free to share this post using the icon buttons below and if you haven't subscribed to my RSS feed, liked me on Facebook or followed me on Twitter, there's no time like the present! 

Need a baby shower gift? Dark & Light: A Love Story in Black and White is a beautiful and insightful board book available here. All profits go towards my son's medical needs. 

Awe-inspiring video on "The Making of" Dark & Light!

I am so thrilled to finally be able to unveil this video to you!

For the last few months, friends of mine (these guys gave me my first journalism job!) at Northwest Media Services created this "pitch" video in an effort to get our story about Dark & Light into a national spotlight. It's interesting just for that reason, but there's a lot of other great reasons to watch it. If you're curious about why Malachi has cerebral palsy or what led us to choose the Anat Baniel Method as our primary form of treatment, this has those answers.

Check it out and let me know what you think!





If this video resonates with you in any way, I invite you to share it through social media. And if you happen to know anybody (or anybody who knows anybody...) in national media please pass this along to them.

Want to pick up your very own copy of Dark & Light: A Love Story in Black and White? Of course you do! It makes a great gift for the loved ones in your life and a fabulous addition to schools, libraries, special needs programs, doctor's offices, etc., etc. Click here to visit our book store! All profits go directly to Malachi's medical fund (which in truth is running on fumes about now...!).

Thanks for your support!

The First-Time Homebuyer Blues

It's as I'm packing up the last boxes from my first home that it really hits me how few things went right with this, the biggest purchase of my life.

I tried. I tried really hard to make the "smart" money decisions, but it seems none of that mattered in the end.

In the mid-2000s, everyone was urging me to buy property, and with the insane loan options they had then I probably could have gotten something nice. But, fresh from a college economics class, I said: No way, prices aren't matching with incomes. The bubble will certainly burst.

Burst it did in 2006. By 2008, the year my husband and I were married, we thought we were getting in at the bottom of the real estate dip on a small 2-bed, 1-bath home in a rough-but-up-and-coming neighborhood. The house was small, but it was also considerably cheaper than the maximum loan the bank would give us — another way we thought we were being "smart" with money.

We found a special first-time homebuyer's program through the Portland Development Commission and jumped through their many bureaucratic hoops. Except, during closing, they suddenly revealed that since my husband had been picking up some overtime in the months leading up to our move, we no longer qualified for their special rate. Instead we would have to take the 5 percent APR of the Oregon Bond Loan, which at that time it was no different than the market rate.

Over the years, we invested in a few home improvement projects as able — renovating the shower and its moldy window, adding a small dishwasher, repainting absolutely everything.

We even heard about a promising new Clean Energy Works program spearheaded by Mayor Sam Adams. The idea was a good one. Say your gas bill is $100 a month. This program set up a loan with $50 a month payments that you use to install insulation that lowers your gas bill to $50 per month. So, you still pay $100 a month, but you use less energy.

That part of the program did, technically, work. Everything else about it was horrid. The recommended contractors were awful; the work had to be redone several times. Sitting down to sign the loan paperwork was also the first time we learned that the loan structure was such that large amounts of interest were paid first and then after six years would be a balloon payment of several thousand dollars. Not awesome.

Fast-forward to today. Our modest first-time home is worth $50,000 less than we paid for it; $30,000 less than we owe on it. This doesn't include any of the money we spent on upgrades.

Because we have an Oregon Bond Loan, we are not with Fannie or Freddie and so don't qualify for any of the national loan restructuring programs aimed at people like us. Because of unforeseen circumstances — namely, a pregnancy resulting in two children, one with a significant disability — we also have dramatically less income and less savings than anyone assumed we would at this point. If we did, we might be able to invest in a refinance at today's current 2.5 percent rates that would almost halve our monthly mortgage payment.

As it is, every month we pay the bank as part of our mutual fantasy in which the house is adequate collateral for our loan. For some reason they refuse to consider the possibility of continuing this fantasy in a refinance that would make it easier for us to not foreclose on the house.

But we're "smart" about money, remember? We haven't missed a payment; our credit is perfect. Doesn't matter.

Oh well. Even if we could refinance, the home is too small for a family of four, especially when one of them comes with a lot of equipment.

This confluence of circumstances means we are moving. Into a larger home, yes, but one that our family of four shares with four other adults. We are doing like many Americans in this lackluster economy and moving into a multi-generational household in yet another attempt to make a "smart" money decision.

Depending on your politics, you may read this account and think anything from: "See? This is why we shouldn't have any government programs," to: "See? This is why we need better government programs."

One thing I know for certain is that my "smart" money decisions look pretty dumb in hindsight.

Things That Have Made Me Cry Today

This morning I visited the perfect preschool. It's within walking distance, Montessori-ish, parent co-op, inexpensive, loads of integrated lesson plans, big beautiful playground.

But, small classrooms crowded with learning stations, bark mulch playing surface outside and no one experienced with physical disabilities. Worst of all, the swings don't even have a back part. Malachi loves the swings. How will he ever be able to swing without a swing seat?

I listened to the teacher describe a typical day with mixed emotions. She noted how each kid put up their jackets on a hook in the crowded hallway and then signed their name in, then wandered to whatever station they chose. Malachi wouldn't be able to participate in any of that, I knew, and it made me very sad. But I was also so proud because the entire time she was describing this, Malachi was sitting completely unsupported on a regular chair, picking up small foam pieces and putting them in a bowl.

How far we have come.

How very much further we have to go.

The preschool is perfect for JJ. And Malachi, for that matter, as long as we can get some help. I really hope that we can make something work with our local services to bring in a full-time aid. We'll see.

But there were other wonderful things that made me cry today.

First, Yankees fans — sworn enemies of the Boston Red Sox — sang Sweet Caroline, a Fenway Park standard, in support of Boston as it mourns the marathon bombings.

H/T: Indian Country Today

Then, I saw that the New Zealand house of representatives burst into a traditional love song after legalizing same-sex marriage. 

H/T: MacLean's

How far we have come.

How much further we have to go.

EDIT: My kids woke up from their nap, so I didn't have a chance to add this link, from Chasing Rainbows. It seems the entire special needs blogging community is mourning with Kate Leong for the loss of her son Gavin, a 5-year-old with cerebral palsy. I didn't have the fortune to hear about Chasing Rainbows before her family's tragedy but I can easily see now why she is so beloved. She is so open, honest and eloquent in her writing — so obviously kind and loving. I highly recommend popping over to read a few of her posts like, In Lieu of Flowers and the beautiful story of organ donation, A Meeting Orchestrated From Heaven.