Friday, August 22, 2014

She's autistic.

Alex's sister is not adjusting well to school, and that is an understatement. She stopped eating, she sleeps even less, she cries almost nonstop. The words "school" or "bus" are enough to bring on a soul wrenching scream and tears that just won't stop. She begs to stay home, she begs for her Mommy. To try to help her through the week, Mommy planned a slumber party and sent me to the store for coloring books. The sister doesn't want Mommy to leave the house with or without her. She wants to be home with her Mommy. Mostly in her lap, crying. I found 4 identical Frozen books, which we knew would be a big hit because the sister is obsessed with Frozen. She worked hard and planned a perfect sleepover party for 4 little girls.

Then she found out that one very important girl would not be able to be there. The mother is very sorry, but she doesn't know how she would explain to her daughters that only the younger girl can go because the older girl is never invited anywhere. She doesn't get invited to parties, or sleepovers, or play dates. She doesn't get invitations from classmates or neighborhood children because she is different, socializing and making friends is hard for her. She's autistic.

I was sent back to the store for one more coloring book with markers. Walking through the store, I had tears in my eyes as I thought of this little girl and thought about my boys. Different, Not Less. It's a lonely cry. You can become so immersed in the special needs world- the therapy waiting rooms, the specialists' waiting rooms, the play groups, the support groups, the online groups, the pages, the blogs, the life...special needs parenting and culture can become such a large part of your life that you forget how hard it is for our children outside of the bubble we create. It's a hard truth. The girl got a Frozen coloring book exactly the same as the rest of the girls. When she shows up, she will know that she is there because she is wanted, she is invited in addition to but completely separate from her sister.

I hadn't been back at the house long before it was time to take the sister to her specialist appointment. Today she got her diagnosis. She's autistic.



I want to jump right into making Mommy a list of places we need to call and appointments we need to make to get the sister the help she needs. I want to hand her the arguments she needs for services, and the key words for getting help through school...but I'm stuck in the emotion of it right now.

I remember the punch in the chest that came with the words, "have you ever considered autism?" I remember begging for help. I remember the hope and the hopelessness that came with the diagnosis. I remember starting this blog/page about 3 years ago and being desperate for someone to tell me that it would be ok. I remember looking for anyone older than Alex who could tell me that there is hope, that it gets better, that it gets easier, that it won't be like this forever...and not finding anyone who could promise me that.

I remember finding my own answers and realizing that it's a journey that you have to take for yourself. No one else can give the answers, but there are plenty willing to give you a shoulder.

I think about my boys and I think about these girls and I just don't know what tomorrow will bring. I can only hope that there will be invitations.

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