Life with Coco and Gigi... and Jack-Jack too!

Life as a Mom, A Homesteader, A Blogger and A Wife.

Great book

I think I mentioned recently that I have managed to find my way back to reading. I have replaced my old fiction, history and chick lit for books about sensory integration disorder, living with special needs kids, general parenting and other mom-related books. Recently I have read some good and some not so good (remember that awesome book with the terrible ending?). A fellow blogger and fellow mom of a non-traditional twin set recommended a fantastic book, My Baby Rides The Short Bus. It sounds terrible but is an amazing book. It is a book written by parents of special needs kids and shines a light on what it is REALLY like to live with a child with disabilities. This book has made me laugh, cry, think and so many other emotions.

Most afternoons I sit with the girls for about a half an hour. I put on Backyardigans or Gabba and I sit down with my book. Gracie usually sits on my lap and pretends to read. Many days she asks me to read out loud. Today I was reading an excerpt from that book out loud to her. It was a section on a child with Asperger's and many sensory issues like Gracie has.

Right when she asked me to start reading out loud the passage read, "During calm times, when I want to embrace him, he pushes me away. He can't tolerate the feel of my skin on his; it is repulsive to him. When he's raging, I can't tolerate him. I don't want to hold him. I want to leave until it's finished' I want to go away. I am repulsed." It felt so pointed. Me reading a passage like that out loud to her. The child who I love so fiercely but can make me feel so awful when she has a crash and bash day. It brought tears to my eyes. I stopped reading and she looked at me and said "Mommy you have water in your eyes." I obviously played it off because she is way to young to understand. It just felt so nice to know this feeling is not unique. That I am not the worlds worst mother on those days where I simply can't stand her.

I am not alone!

2 comments:

ferfischer 4:00 PM  

I'm glad you like it - I liked it too - people talking unabashedly about what it's really like. I had to return mine to the library, but maybe I will purchase it and lend it out to friends!

Kristen 10:51 PM  

I got it for a little over $10 off amazon. Worth every penny! Thanks for the recommendation (again!).

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Over 8 years we have struggled through 3 IUI's, 6 rounds of IVF, several RE's, hundreds of appointments and the loss of three little angels. Now we find ourselves the proud parents of two perfect little girls and a wonderful little boy!!

Both of our girls struggle with some disabilities but that won't keep us down. Each day has it's own brand of insanity but we love it. Most days I am more monkey wrangler than mother but I do the best I can. Todays goal - getting to tomorrow.

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