A Parent's Perspective - Outrageous Fortune

Today I'd like to give a very warm welcome to Shasta Kearns Moore, mom to adorable two-year old twin boys, JJ and Malachi. Malachi has quadriplegic extrapyramidal cerebral palsy and dysphagia (a swallowing disorder related to his cerebral palsy). Shasta blogs about Malachi's journey at Outrageous Fortune. I have been following Shasta's journey thought her Dark & Light Kickstarter campaign, which has resulted in a published a children's book, Dark & Light: A Love Story in Black and White, to raise funds for her son's therapy. I am so happy to have Shasta here today to share her perspective!

Our life in five words: 

Busy, thoughtful, roller coaster, books, love

 

Four qualities I look for in a therapist: 

1. Maturity: I very much don't mean that in the sense of age. I mean that in the sense of complexity of thought and a calm demeanor. I believe people can interact with children without resorting to "coochie, coochie, coo!" or flashy lights and loud music. I also want them to understand in a really deep way what it is they are doing and why.
2. Communication: Perhaps it's because I'm a writer, but communication is huge to me. I need a therapist who is willing, open and able to talking about what they are doing and why. Since it's me and not them who is interacting with my son on a daily basis, I need them to be able to explain to me what's going on so that I can implement their strategies and give my son the maximum benefit of their expertise. In fact, I think some therapists could do well if they interpreted their job as more of a parent teacher than a child teacher. Have the parent get hands-on and do the exercise every once in a while while you are there to guide them. 
3. Professionalism: I need a therapist who gets down to work, even if that work is play! A therapist's job is to help and think creatively and offer solutions to problems, not to chit-chat. 
4. A teaching paradigm: My son has cerebral palsy, which is a brain disorder although it is often treated like a muscle disorder. I need the people who work with him to see that he has limitless potential, just like any little boy, because he is capable of learning. He does not need to be "fixed" nor can he get better at something simply by "working harder." Compare this to a child who is struggling with algebra. We wouldn't consider him irreparably broken because of his initially poor math skills and we wouldn't think the solution is to force him to "work harder" at repetitious assignments. We would think creatively and try to supply him with the missing information he needs to understand and then allow him to reach the logical conclusions for himself. This is not only a much more effortless but a much more successful approach. It's not that Malachi's muscles aren't under his control, it's that he doesn't understand how to use that control. Teach him and, step-by-step, he will learn.

Three resources I can’t live without:

• Baby Einstein music toy. This thing is fabulous. Both boys love it, but Malachi would crawl to the ends of the earth for it. The music is nice and soft (there are two volume levels) and never gets annoying. The button is very large and easy to push. The handle makes it nice to carry. The lights are entertaining for when you need a break!
• Alphabet mat. I really think Malachi would not be crawling as well as he is right now without this. This mat is hard enough to give him feedback about where he is in space but soft enough that he's not grinding his elbows off or going to chip a tooth if he slams his head into the ground. I think it makes him much more willing to try new things and make mistakes since he doesn't have to pay so dearly for them as on our wood floors.
• Kids Beyond Limits by Anat Baniel. This book irrevocably transformed the way I see my son's disability and gave me real, concrete tools I could use to improve not only his life, but my own. It talks about how the brain learns, and once you start talking about the human brain, you realize how the same theories can be applied to pretty much any aspect of human life. I cannot urge you strongly enough to get a copy.

Two words (or more!) of advice for therapists working with children with cerebral palsy:

 As I said before, I think a major shift needs to take place towards viewing CP as a brain disorder instead of a muscle disorder. This is a really huge and complex issue, but I highly recommend reading Kids Beyond Limits to really understand how different the approach to CP can be. I've found this approach helps me relate so much better with my son's struggles. Instead of thinking that there is some sort of invisible and incomprehensible resistance in his muscles, I now know that the actions I see are simply a byproduct of disorganization in the brain. It's like if I held a glass of water with one hand and checked the watch on the wrist of my other and accidentally poured the water out. At that moment, my brain was just disorganized — confused as to which hand it needed to rotate. That's what the majority of CP symptoms are like — movements that aren't sequenced correctly or are grouped ineffectively together in the person's mind. So the task is teaching the brain the difference between different parts of the body and the sequence needed for using them effectively, not stretching, cutting, botox-ing or otherwise treating the muscles as separate from the person inside who is wielding them.  

A word of advice for the parents of a child newly diagnosed with cerebral palsy:

Well, I'll get off my Kids Beyond Limits/ Anat Baniel Method soapbox for a moment and just talk about the effects of the diagnosis on a parent's psyche. For this, I would recommend finding or creating a community of parents going through the same thing. For me, I started a blog and met lots of parents — even parents of multiples with CP — who made me feel not quite so alone in my struggles. The difference between how I felt before I had any real idea of what living with CP would be like and today is like night and day. All fear comes from not understanding the future. The more you can learn about what it's *really* like to have a kid with CP, the more you see that it's not so scary. 

 

One dream for my child:

That he will walk independently. I've told myself that I will be happy if he can just crawl and sit up independently. I will consider us to have crossed the finish line. But if I'm really honest with myself, I do dream he will go further than that, even though, in fact, especially because conventional wisdom says he won't.

Actually, more than anything, I hope that he is accepted for who he is by his peers. Yes, more than walking, or even crawling, I hope that he can make friends and keep them.

What I do to rest and recharge:

Read fiction, sleep, watch Netflix with my husband, and blog. (Yes, blogging is often a stress release!)

  

Thank you so much for stopping by, Shasta! Your words are truly inspirational! Readers, you can follow Malachi's progress on Shasta's blog, Outrageous Fortune.

Other ways to keep up with Shasta and Malachi:

Twitter @ShastaKM, Facebook, and Pinterest

And of course, don't forget to check out Shasta's new book, Dark & Light: A Love Story in Black and White.