Saturday, February 13, 2010

Writing, Parenting, and Sensory Disorders

I write fairly often about my son's struggles with Sensory Processing Disorder. About his eating issues. About the way his motor skills delay affects him on the playground. About his problems concentrating in a noisy environment at school. I write about how these issues affect me as a parent, about my own struggle to smooth a path through this world for a child with a developmental delay.

I worry, sometimes, about writing publicly about these things, because I don't want to embarrass my child by revealing too much about his personal struggles. I don't want to unreasonably skew the way others who have never met him in person might see him. I don't want to label him permanently as a person with a problem. I want the world to see him as a child with a disorder, not as a disorder attached to a child.

So I worry. And I censor myself, sometimes. And sometimes I freeze up altogether, unsure of how much to write.

I think carefully about what I do write. I weigh the costs and benefits of telling a story about my child, carefully, before I push the publish button. If I write this story, will it help me think through a problem? If I share it, will that help me find advice from others who may have had similar experiences — advice that may help me help my son? Will it help raise awareness about sensory disorders? Will it help another parent of a child with sensory issues feel a little less utterly alone?

I like to think that by writing publicly about my family's experiences with my son's sensory problems, I am helping to create a future world in which those problems will be better understood. I hope that one day, the acronym SPD will be as familiar and commonly understood as ADHD, and that the label will carry as little mystery as an ADHD label, and no stigma.

I hope that ten years from now, when my son explains to someone why trying new foods unsettles him and the sound of a vacuum bothers him and climbing a staircase makes him nervous (and also why he can memorize the drum track of a song after hearing it just a few times, and why he never fails to notice a friend's new haircut, and why he can tell you what precisely seasonings went into a sauce, and why he can tell from across the house when cookies in an oven are finished baking, just by the slight shift in their smell) that instead of "You have a sensory disorder? What on earth is that?" he will hear "You have a sensory disorder? Oh, that makes sense!"

And I hope, too, that one day, when my son is grown, he will understand that is why I wrote about him. To pave his way.


Cate Brickell said...

I wanted to say thank you for taking the time to share your son's "problems"...

I'm not sure how I found your blog (probably following a link from somewhere and thinking "yep, I'll add this to my reader"), but your story about your son eating a hot dog sparked a light in me - I have a friend with a daughter who refuses to eat anything except bread with much struggle.

I suggested "maybe it's SPD, I read a blog and she sounds like this", and bells rang in mum's head too! She now has an explanation and a way to help her daughter, and they are finally getting support from their family doctor, who until now told mum it was all in her head.

So, thank you for helping another mum, and please keep writing.

Anonymous said...

I kept my daughter's diabetes diagnosis private for a few months. But then I realized that it was helpful to me to write it out. To get things off my chest. To share what I have learned.

I have found a community of other people affected by diabetes who are caring and supportive and can answer questions better than any physician because they have been there, done that.

I think it is admirable that you are sharing your story. I am sure you are a tremendous resource to other parents facing the same issue.

And I think we have talked before that I think hearing another parent's struggles, even if they are not the exact same struggle as your own, can be liberating and make one not feel so isolated.

Katherine from Postpartum Progress said...

I know what you are saying. I sometimes question whether I should even comment on someone else's post about sensory processing disorder because then people will know my daughter has it and it's not any of their business. To be honest, I don't think anyone would have any idea she has SPD if they weren't told. But then I think I need support too. I need to be able to talk to other moms who are working to help their children with this disorder. I want to know how best to assist her so that certain things won't frustrate her to the point of sobbing. I thank you for your honesty.

Pamela said...

I've just found your blog and haven't read much of what you've written about SPD (will be looking for it now!) but I wanted to thank you for writing about it. My son has an SPD diagnosis, also, and it's still a big mystery to me -- how to understand it, how to deal with it, and how to explain it. I guess it just makes it more difficult that everyone's SPD is unique to themselves. Anyway, I look forward to reading about your son -- I think it does help others in the community.

Anonymous said...

Just recently stumbled on your site and saw the spd category. I have a son with this issue and it is very comforting to see a mom write about it. Like your first commenter, our doctor dismissed the preschool teacher's concerns, but she pressed on until we had evaluations done. And I'm thankful that she did or the last three years would have been much harder and he would be much further behind.

So bravo for writing about it. I appreciate reading it and know I'm not the only one.

-Sally Johnson