Sensory Processing Disorder …one mom’s journey

I’ve learned to see our experiences with Sensory Processing Disorder as a journey. It’s a hard road to follow some days with twists and turns along with sudden changes in direction. We have good times and bad; easy times and times when we struggle; times of painful tears and other times filled with belly-laughs; and a lot of times where we wonder how on earth we’ll ever go on. But, somehow, seeing these times we’re going through right now as a ‘journey’ makes everything seem more positive…hopeful.

Five years ago, when my daughter, Jaimie, was only two-and-a half, I was introduced to the world of Sensory Processing Disorder. Actually, we’d already met and gotten rather acquainted with SPD, we just hadn’t been properly introduced. We saw Jaimie’s disturbing reactions to her environment and the people in it. We watched her slowly slip into her own world because the bigger one around her terrified her too much for her to deal with and we didn’t have the knowledge or resources to understand how to bring her out to us. And for two-and-a half years—from the first day we’d brought her home from the hospital—we knew something was wrong.

No one was able to explain to us why Jaimie wouldn’t eat or let us hold her or why she couldn’t tolerate us speaking to her or why she wasn’t able to ‘get’ things the way the other kids around her did. Then a wonderful OT listened to our cries for help and made sense of everything and our journey went from despair and fear to acceptance and determination.

Of course, it was still a bumpy ride because we had a name for what Jaimie lived with—a diagnosis—but no one seemed to know what it was. Instead of giving up,  it sparked a passion in me to make sure others did know. That was the part of the journey most meaningful to me—as a mom. I may not be able to hold or touch my child but I can help others understand what she needs to thrive. I can’t control every aspect of her environment but I can help her transition within different settings (and assist those in those settings with her) by absorbing information and sharing it with others. I can help her by reaching out to other caregivers with the same diagnosis but whose stories differ because each of our children are living with it in a different way and you may have strategies I haven’t tried and vice versa. I can help her by raising awareness through listening, educating and advocating. These are all proactive ways we can inspire ourselves to move forward…to give us strength to take on the next challenge we face on our journey.

To me, Sensory Processing Disorder has been a blessing in a strange way because Jaimie has introduced me to a unique perspective of seeing and living in our world. I know that one day, Jaimie will be able to pass her experiences onto others…to help those families to move forward along their own journeys…because by then she will have the wisdom and experience to draw from. These are all beautiful gifts that give me hope for the future—to see that there is an end of the road for our journey. Yes, we still have a long way to go but we embrace each baby step with enthusiasm. After all, a journey—an SPD journey—is ongoing and filled with new adventure every day.

And that’s so powerful.

CHYNNA TAMARA LAIRD lives in Edmonton, Alberta with her partner, Steve, and their three daughters [Jaimie (seven), Jordhan (five), and baby Sophie (twenty-one months)] and baby boy, Xander (three). Her passion is helping children and families living with Sensory Processing Disorder and other special needs.

Her publications include the children’s book (I’m Not Weird, I Have SPD), a memoir (Not Just Spirited: A Mom’s Sensational Journey With SPD) and a reference book about the Sensory Diet (coming January 2011).  Visit Chynna’s website at www.lilywolfwords.ca, as well as her blog at www.lilywolfwords.blogspot.com.

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