Tuesday, November 18, 2014

'I do feel sad sometimes, but Kate isn't'

Last week I shared a new comment written on our most popular post The Invisible Mom by Sue Robins. The Invisible Mom is about how mothers of kids with disabilities can face the same social exclusion their kids face. Julie Drurie, mom to Kate, 7, who has a rare mitochondrial disease and took the selfie above, wrote a thoughtful response on her blog Searching For Solid Footing. We've reprinted it below. She made me think about how my perception of my child's exclusion may differ from my child's perception. Interested to hear your thoughts. Louise

'I do feel sad sometimes, but Kate isn't'
By Julie Drury

The first time I read The Invisible Mom I didn’t think that was me. I understood it and felt strong empathy for Aaron’s mom, but I didn’t think I felt the same pain and angst of exclusion as she.

But then I started considering how Kate is ‘included’ and ‘excluded,’ deliberately or not. I reflected on the moments where her differences stand out so starkly and where I hustle to make excuses for her…

…“she can’t hear you.”

“yes, she’s 7…but she’s more like a 3-4-5 year old.”

“she is signing or saying this that or the other thing.”

“well, she could come to the party…but maybe I should come too…to help…and she’ll probably have to leave early.”

She’s the kid who leaves early from school, is often sick, wears the funny helmet, has a tube in her nose, doesn’t speak, sometimes hits the other kids, is often in her wheelchair stroller because of fatigue, runs away and won’t come back, doesn’t understand when you ask what her favourite colour is (but she can tell you her name and how old she is!!). Some (few) make an effort to include Kate, but playdates, birthday-party invites and get-togethers with the girls are not really part of her life, sadly.

She loses her peer group annually as others grow and mature and learn and she is left behind. Her reality is that adults are her friendsand the few children whose parents facilitate them staying engaged with Kate.

Do I feel left out? Sometimes, yes.

Am I sad? Yes, I grieve ‘loss.’

More importantly, does Kate feel left out? No. Is she sad? Nope. She has her friends at school that will change year to year, but that she values nonetheless. She has her friends at Rogers House (Myah, Moon Pie, Buffa, Mat-teww), and her adult friends (Christine, Kat, Erin, Kara, Adrienne, Vanessa, Steffi, Tall Steve, and more) that she loves. She is developing her own friendships and through those connections, I am finding my peer group of moms and friends as well. A different peer group than what you would expect, but a very valuable one.

I don’t think I am an invisible mom. I think people see me. If they don’t, I usually make them see me and Kate.

I wish for so many things for her. I wish for playdates and friends and movies and outings and independence.

I do feel sad sometimes. But Kate isn’t. Not yet. For now she is happy. Like Aaron’s mom I hope she never has to understand or become aware of the pain of invisibility.


Boy, do I understand your post. I go back and forth with my feelings surrounding my son and play dates/friends and lack there of..His "friends" range from a 6-year-old neighbor girl to the 8th grade football players who eat lunch with him at school (God bless them)..As far are play dates like my other boys have - not so much. He seems happy although he does ask for real play dates and it kills me that I these are few and far between. I am trying to get him more connected in the community but truthfully, he doesn't quite fit in anywhere. This has been an ongoing source of frustration. It is nice to know that I am not alone. Certainly, the mainstream parents can't relate.

My special son is now age 13. When younger, we were able to get him socially involved through play dates, children of our friends, and younger children are more open and accepting in their social groups abyway.
Adolescence is different, it is apparently developmentally the norm for adolescents to be more peer oriented, and flock to peers who are like them.
My son has no friends now, never gets invited anywhere, we no longer invite "friends" for him, because it was not working - seemed too forced / fake.
He keeps busy with his hobbies and interests and with us. I don't know how he will fare moving forward.

Thank you Diane and Anonymous for posting! I certainly hear you and understand your situations as my son is now 20. Thank you for sharing.

I encourage our readers to check out Diane's blog: http://5littlemonkeys.me/

I wonder where I will be, and where Kate will be when she is the same age as your boys.

Likely similar. I don't envision much changing for us.

I wonder how she will react, and at what level she'll feel excluded. Or if she will.

Thanks for sharing part of your stories. We really do learn a lot from one another.

Hi Julie - I wanted to pop in to say thank you for your essay. As a writer, most of what I want to do is spark discussion and thought in the world, so I always appreciate responses. Our experiences are all different, but the one thing we can take comfort in is that we are in this together!

I so appreciate the forum of Bloom to bring us together. Please keep on writing! Warmly, Sue.