Tuesday, October 11, 2016

One big way to help your child with special needs: Have an open mind

This weekend, at an event, I met parents who had moved to this country for their child with special needs. They'd lived in a major city there and yet, they told me, there were no services or specialized schooling for their son. "A lot of children stay at home," the mother said. For a while, they'd come to the states for a month to get him intensive speech therapy, then return home. Finally, they moved here. They talked about doing horseback riding therapy for him. When I said there were a couple of places nearby and mentioned their names, the mother whipped out her phone and tapped notes.

Later, I bumped into an awesome mom I met through this blog in the most amazing way: She'd been Googling treatments for her child, who like Max has cerebral palsy. She found this blog and read about Max's stem cell infusion. Her child ended up getting one, too, and she was considering a second round.

This weekend, I also met parents of a child who was nonverbal. I asked about whether he had tried an augmentative communication device or eye-gaze technology. They said they'd tried a lot and nothing had worked. They seemed resigned to a reality in which their child might never change. I mentioned that I could give them the name and contact info for a really great augmentative communication specialist who might have ideas. The dad nodded politely. They did not take me up on the offer. Who knows why, but it got me thinking.

There are a lot of things I've learned in my journey as the parent of a child with special needs about what will benefit him. One of the top ones is: Have an open mind. You never know when a treatment you haven't yet tried can help, a new expert could help or another parent's advice can help. No harm can come from accepting information, but good could.

I know how easy it is to get complacent about your child, as one of Max's OT's recently reminded me. Because of the cerebral palsy, Max's body still has certain infantile patterns, particularly the asymmetrical tonic neck reflex (ATNR)—you've seen it in babies. When infants turn their heads, the arm and leg on the same side extend, like a fencing position.

The ATNR is usually integrated into body movements when a child's around three months old. When it persists, it can cause trouble—a child may have trouble bringing his hands together, for instance. It can keep a body off-kilter (Max walks OK but also trips on occasion). It can lead to scoliosis.

I have asked for therapeutic exercises over the years to help with the damn ATNR, tried them, fell off the wagon. And then, Max's OT got trained in the Masgutova Method, a noninvasive treatment that involves doing limb exercises to retrain the brain—aka muscle-control central. And did I want to try it? Yes, please.

It was a message to me: We could be doing more to enable Max. When he was little, we did hippotherapy (therapeutic horseback riding), aquatic therapy, craniosacral therapy, hyperbaric oxygen treatment. As Max got older and improved, we did less. Now a teen, he still has plenty of potential, as explored in Dr. Karen Pape's new book about the power of the brain to heal. To believe otherwise would be in Max's worst interest.

I am not saying parents of children with special needs should be falsely or overly optimistic. I'm saying that although we may feel disheartened at times or been-there-tried-that-fatigued or out of hope or overwhelmed by all there is to do—or as content as we may be with our children's progress (and still overwhelmed by all there is to do)—we have to keep an open mind. Obviously, we can't do every therapy and treatment we find out about, as that isn't humanly possible and besides, our children need to have lives, too. But it's good to have them in our arsenal of care and hope.

Yesterday, I read an amazing Facebook update from Joyce Hillick Ely, mom to Sarah, an adult with Down syndrome. The two had delivered hand-sewn pillowcases to the hospice where the grandmother had been at the end of her life. Joyce recounted how Sarah had made her way around the facility, chatting with volunteers, nurses and a patient. "If ever there was a time to accept the notion that limits are unnecessary, it was today," she noted.

We don't know our children's limits. Doctors can't put a cap on their potential, either. And that's why it always pays to ask the questions, take the name or the phone number, keep the advice in mind and be willing to try new things. We owe that to our children.

Image source: Flickr/Sunny M5


  1. Thank you Ellen so much for this post. My son too suffers from grade 4 bilateral brain bleed and he is 2. I have a conversation with his neurologist yesterday and she says there is no cap to a person's potential when it involves stroke at early age because the brain keep healing and growing.
    I didn't buy dr Karen Page book yet but I read her article about hemi while I were looking up statistic about hemi. I have learn a great deal about how kid will walk but how they will walk is the concern.
    I just want to share my experience a little bit. Currently my son is receiving PT, OT, ST, and feeding therapy, make it total about 3.5 hours a week. To a child at age 2 and for a small family that's plenty of therapy. We find it is busy enough to keep up with his daily therapy, his daily routine and does his home exercise. I know there are many other therapy out there but I find that I need to choose wisely so it will not overwhelm my son or overwhelm us as parents and also our budget.
    There are pro and cons in all therapies so if it is not overwhelming and if one can afford it without breaking the bank or if it's really necessary for the child to have improve quality of life then yes, but otherwise I think traditional therapy is very effective and is enough to keep a family on their toes.
    Thank you for reading my lengthy comments.

  2. Doctors can't increase your potential either. They all thought I'd cure cancer, end war, and make clean, infinite energy by now. Guess what? I have done nothing of the sort. They can only work with what they have. I turned out to have less and others will turn out to have more.

  3. I loved this post. I constantly find myself thinking "there is no way (insert treatment here) will work", and then I try them, and am amazed. Baby not slepeing? try a sensory blanket (amazing!), not walking, try leg braces (stands so much straighter)! This is a great remiderf or a lot of parents.


  4. Yes and no. I find the balance between being open minded and trying new things vs. acceptance, finding happiness with what the child can do, and therapy fatigue, a very difficult one. At the moment i am in the "acceptance and enjoying what we have" and that means i'm more closed to new therapies than before...

    Interesting discussion in any case.

    Thanks for blogging, take care


Thanks for sharing!

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