Sunday, June 30, 2013

The Lies People Tell About Special Needs Parents

There's a narrative that floats around a lot about special needs parents. It goes like this:

Doctors told them their baby would never XYZ. But they didn't believe them. They refused to give up and now their child can XYZ!

This narrative is told over and over again. If you're watching for it, you see it everywhere.

I watch for it. I used to breathe it in, let it wash over me. I told myself: That's gonna be me one day.

Even still, I want it so badly. I want Malachi's disability to be conquered by hard work and determination. I want it to be just a matter of how much I refuse to give up. If only it could just be a matter of how much I refuse to give up....

But what I'm realizing is that whenever that story is told, it is never the whole truth. And, even more surprising, for every one of those stories, there are hundreds of parents out there who are trying just as hard and never giving up but yet somehow not getting amazing results. Those stories never get told, do they? Who would want to hear that story?

Malachi is three years old this week. If I am totally honest, his gross motor is nowhere near where I thought it would be by now on his first and second birthdays. He still can't sit by himself, let alone walk. If I can blot out from my memory the times when I thought he would have progressed so much faster, I can be pleased at the progress he's made in recent months. He is doing very well with sitting in a chair and I can even prop him up on the floor for a quick second or two without worrying too much about him falling over. His manual dexterity is improving greatly and his iPad skills are impressive. He is self-feeding quite a bit and though the quantity and variety of meals are a daily struggle, he is eating a lot more than last year. His speech is fairly clear and age-appropriate. He has pretend play. He is very funny. He can sight read lots of small words. He really loves numbers, letters and languages.  He can count in Spanish, French, Russian and Japanese and constantly asks us to translate things.

Yes, there are a lot of things Malachi is very good at. There are a lot of reasons for me to be proud of him and proud of whatever role I've played to get him here.

But that's where it gets murky. How much credit do I get for what he can do now? For example, was it my hard work that instilled a love of numbers in him? I don't think so. I think that in the chaos of an injured developing mind he just really finds comfort in predictable sequences. People tell me: no, you're a great mom, that's why. But that makes me feel squeamish because the other side of that coin is that if it was my hard work that made that happen, then why is it that every time I apply myself to the areas he struggles with I come up empty-handed? Am I just not trying hard enough? Have I — God forbid — given up?

I'm coming — round and round, like a buzzard circling — to believe that there is nothing I can do to fix Malachi. I come to this realization a lot, but it always butts up against that other narrative about the mom who never gave up and now her kid is OK.

It's so hard to know which obstacles are put in our way to overcome and which are our crosses to bear.

If there is an undeniable good to come out of this situation though, it is this: I have been humbled. I know now how little control I have on the world. I know now that life is not about checking off the right boxes, that my effort alone will never be enough to make the world right.

I know that even if Malachi does walk one day, it won't be because of anything I did. It won't really be because of anything Malachi did either. There are some kids who just don't ever learn to walk and it has nothing to do with whether or not they or their parents gave up. Then there are some who, it turns out, do.

Call it God. Call it fate. Call it whatever. But don't call it me.

Feel free to share this post using the icon buttons below and if you haven't subscribed to my RSS feedliked 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. 

Friday, June 21, 2013

Somebody Let Me Off This Roller Coaster!

They say that when a mother gives birth, her brain is flooded with oxytocin — the "love" hormone. This hormone lowers essentially the "pain" threshold of incorporating another being into your life by making it easier for your brain to change.

Since we got the diagnosis mere days after I gave birth, I worry that my brain has therefore been somewhat permanently altered to be manic about Malachi's disability.

Already today I have had enormous mood swings about whether or not I think Malachi might walk someday and whether what I'm doing is helping him get there. As I lay down to sleep... well, of course I can't sleep, can I? The weight of a hundred schools of thought and excruciatingly little scientific evidence of what works with kids with cerebral palsy is bearing down on my shoulders. I work myself into a frenzy debating the various options for what I think is quite literally the millionth time.

This afternoon I used Mom Power to locate a very small manual wheelchair for Malachi to try. Our hospital PT had been trying unsuccessfully for six weeks to get one but I finally just asked my local Facebook group of moms and got two offers within hours.

So, I sit Malachi in it and... what did I expect? He cried and was scared of falling out of it until the other mom helpfully offered her belt to help secure him in. Once he felt safe, I had to resort to some tricks to get him to even touch the wheels. Then I relaxed a little and started a game: "Touch the wheel; touch the iPhone." Then: "Push the wheel in any direction; touch the iPhone." And finally: "Push the wheelchair towards me; touch the iPhone." This took about 15 minutes and then he asked to get out, so I let him. Point being... he can probably use it. But he sure isn't going anywhere fast anytime soon.

Meanwhile, the other mom keeps telling me about what a long road it was for her now-8-year-old daughter to get to the point she is at today — walking with a walker, etc. — and essentially telling me that I shouldn't give up hope.

I believe her. And even though progress is screamingly slow with Malachi, I do see many of the elements he needs to walk already here now. As I drove away, the sun shone on puffy white clouds and I wondered how I could ever doubt that things will turn out OK. Of course Malachi can learn — he's awesome at learning and learning never stops! And hey, even if Malachi does use a power wheelchair his whole life, what's the big deal? He's smart, funny and personable. So, who cares?

I do, goddamn it, says a little voice that growls louder with each passing hour. I'm the one who's going to have to schlep him up stairs and transfer him into beds, etc., etc. And for goodness' sake what am I doing all this unconventional therapy for if he's going to be at the bottom of the charts anyway?

As I lay awake, I think, and not for the first time, that I've totally messed up, turned our lives upside-down for nothing. I agonize that I really need to do more therapy with him and that I don't put him in his various contraptions enough. I worry that the environments I put him in could be more conducive to moving and that I haven't even tried whatever idea it was I had two weeks ago.

I worry that if I get him a power wheelchair that I'm "caving" or "giving up" on him ever walking, because why would he want to try crawling if he already had something that propelled him around? (Indeed, he already does that with me.) But I worry that if I force him to be in a manual chair that it will just become another piece of unused equipment that he hates being made to try and I will lose out on all the developmental and social benefits an effortless propulsion system would offer him.

Then I worry that I care too much. And then I worry that I don't care enough. I wonder how I could have possibly thought a few hours ago that things were OK.

And through all of this I tell myself: STOP! It's not up to you! There isn't a magic bullet and you're doing the best you possibly can!

But before I know it, those compulsive voices start up again and I hear the tack-tack-tack of the roller coaster as it climbs to the sky.

Feel free to share this post using the icon buttons below and if you haven't subscribed to my RSS feedliked 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. 

Tuesday, June 04, 2013

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!

Feel free to share this post using the icon buttons below and if you haven't subscribed to my RSS feedliked 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. 


Related Posts Plugin for WordPress, Blogger...