Today's SNSS guest is the lovely Gina St. Aubin of Special Happens. If anyone would know that it does? It is Gina. She has a busy family with three children, with her eldest, J being multiply challenged.
I mean multiply: Cerebral Palsy, Autism, Sensory Processing Disorder, and, most devastatingly, Landau-Kleffner Syndrome (LKS), a rare epileptic disorder. As part of this last, J experiences a severe sleep disturbance in that he does. not. sleep. Hardly ever.
And then Gina has a three year old son and a four year old daughter to care for as well. (Are you getting tired just reading this? I am.)
All this, and Gina still finds the time, energy and fortitude to be an advocate for special needs children, parents and families. She champions our children. She is inspiring to read.
And yet, she also has her struggles, her soul's midnights. And that is where she has come from to write this post she shares with us today.
Some SNSS posts are heartwarming and light, celebrating brotherly or sisterly love. This is not one of them. This one is about that stuff that hits the fan.
It breaks my heart to read, and also I nod, knowingly, understanding because, well, I do.
So come, read the story Gina has brought, here:
When a Brother's Love Hurts - by Gina St. Aubin
“Mommy! J is hitting meeeeee!” B pleads.
“Mooom, J bite me!” B says angrily.
“STOP J!” enforces B as strongly as he can before J goes back for more.
“MOM! J won’t stop hitting me. He kick me. MOOOOOOOOOOOOM!”....
I watch B and worry, heart aching for all that he’s enduring, the likelihood of just how this is shaping him…
He is caring, sharing, kind, funny and gentle, yet can be rough and tumble. He loves who he loves, will follow in your lead but stand firm when you’re turning down a path he is adamant not to trend. Strong, brave, lighthearted... breakable.
This three year old endures the strikes. The torments. The kicks, pulls, pushes, strains, bites. Slaps upon the head. All he absorbs, he does so with tears.
Cries for help. Pleas for someone to make it all stop; though there are times I come to find that he’s enduring without the tears. Silently turning to huddle inward, protecting what he can until the tormentor moves on….
He just wants to play with his brother. His brother, 8, has Autism. His brother who is his tormentor... and his playmate; the boy he looks up to, enjoys, loves so fully.
He seems to hold onto the times they have fun, laughing and squealing like the best of friends. Play for chunks of time where no injuries are received, where no pain is felt, and only the laughter of childhood friends fill the room.
I love these times. They remind me that J is ‘normal’ in many ways. He still wants to have some of the many interactions that a NT child wants. He still is a sibling, still has sibling rivalry.
These times also remind me also that his siblings see him for who he is rather than a person ravaged daily with epilepsy along with climbing the daily mountains of autism and more. These times are the times I see our family as it would be if things weren’t as they are. Yet still I measure the actions, the sounds, the level of laughter or energy, or excitement. Because of... well... the OTHER times...
The first I thing I should tell you is that these aren’t ‘beatings’ (don’t call a caseworker, no serious injuries have ever been received), they ARE NOT extremely forceful exhibits of hostility so much as excitement drawn out in less-than-soft swings filled with a lack of impulse control.
But, it is my three year old getting hurt by my 8 year old. It is my NT child being hurt by my severely NOT NT child. It is tearing me up inside just as much as it’s impressing upon him.
I’m torn with duties, with raising and guiding my kids to be independent, strong, self-confident beings able to run and wreak havoc on the world. I can’t watch the kids every second of the day, without decidedly never making them a meal.
Going to the bathroom, folding laundry or even picking up a toy in the next room simply leaves too much time for altercations to occur, yet I still want to foster a good sibling relationship. I try to allow room for them to work things out and negotiate with one another, becoming the people they will become in the future, with experiences and understanding of relationships under their belt... while keeping them safe. That’s my primary duty... keeping them safe.
So, I worry about him... my B. My three year old with a heart of gold. He loves his brother with more love than I knew a sibling’s heart could hold - but, is he learning to succumb to the abuses of others?
Will he become a victim? Am I teaching him to stand up for himself by coming to his rescue and then giving him the words and actions to keep himself safe? Will he be strong? Will they keep their relationship of loving brothers? Will his innocence be smashed?
Am I keeping him safe?
I’m trying... I come to the rescue. I come running, often. I hurt often, hearing his cries. I wonder... how much is J’s hurting him... hurting him!?!?
This is a brave, brave post for Gina to write. It is so hard to talk about the things we don't have answers for, only questions upon questions.
It's hard and brave to write about fears, about those bone-chilling places where we worry that our best just isn't good enough, and harm is coming to our children. Mostly we slap rosy paint over this stuff, or try to hide it away in our brain's back closet.
So I applaud you, Gina for voicing the secret thoughts so many of us have and are afraid to speak of, for fear of being judged, by our own selves and others. Thank you. Truly, thank you.
And now that you have read Gina here, please follow her home to her blog, Special Happens, where she is creating a wonderful space for connection and communication about special needs parenting.
Start with this post, about what autism means to her, and then maybe this one, and this one, about being the parent of a special needs child. Or, for a lighter moment, this one about how a snow day began, last winter.
Besides writing on her own blog, Gina is a regular contributor at the 5 Minutes for Special Needs site, among others. Finally, you should follow Gina on Twitter, and go "like" her on her Facebook page, joining her awesome community.
And once again, thank you so much, Gina, for your candor and honesty. I am honored to host your words here today.
Looking for comments? To read or leave a comment, click on THIS post's title, or HERE, to bring you to the post's page view. Comments should appear below.