Sunday, May 8, 2011

My first Mother's Day with a daughter with Autism

Now she was around last year. So I've always been her mother. But then there's been many changes in the last year at our house.

This is one of the last pictures I have of her where I was able to catch her attention and get a happy look from her.
Easter 2010
We started many days of therapy for our little one in March of 2010. Monday through Friday there have been therapists coming and going. A whole summer of therapist appointments. Not a single trip to the zoo or beach or pool.  Basically housebound with 2 toddlers.

In the fall she started  at a little school through a little church that was basically a Parent's Day Out program. We had sent our oldest there for 2 days a week and at the beginning of the year we made arrangements for our youngest to start in the fall as well. I gave her teacher a heads up and described her issues in detail as to not to spring things on her and the other teacher. Already a week into the program we were becoming more aware of her social issues and her ways to deal with frustration and stress.
First day of school and she's ready to rock.
The day after she started her class we got her official diagnosis. I say official because we already knew. We were hoping it was just the sensory integration disorder and not the whole shebang of Autism. We knew it was a possibility but one we hoped we wouldn't have to fully except.

Not much has changed from those early days. She's not saying spontaneous words for us. She's gotten to the point where she will push you into the direction of what she wants and gestures to what she wants but will not say what she wants no matter how hard we try to get her to use her words. We know she has the words. We know she does. I've heard her say two complete sentences. Two complete sentences. One she asked her speech therapist, "what are you doing?" and the second one she repeated what I asked her when she got her legs stuck in the slats of her crib. She asked "what happened here?"
That's all I've heard her say. She'll say words for her speech therapists during a session or with her OT during a session but it's always on her terms. I've  gotten to the point where I play dumb in hopes she'll finally use her words. I've gotten "maaa" but that's either milk or momma. She loves milk as much as she loves me so it's either me or milk with her.

In the last year I've dealt with a little girl who takes her frustrations out on herself or me. Once in awhile her sister gets the repercussions of a little sister who fights back for a toy but mainly it's me getting the brunt of her frustration. I've been head butted, hair pulled, pushed around, things thrown at me, flailing body and pulling the all famous "going no bones" on me at the most appropriate times.

Today's Mothers Day was no different from any other day of the week. She didn't know that she should treat mommy nicely. I got head butted a few times today, pushed around a few times and basically an unhappy little girl today. There were two moments today that were good. One was when we were trying to get ready to take a picture of me and my girls.

Avery smiling * only I believe because the flash of the camera was making her laugh.
My little girls and me.
The above is the best that we could do with two squirming little girls. One who doesn't look at you when you ask her and the other has Autism and could care less we are taking pictures. Here's another outtake of the photo shoot:
The one in yellow does not have Autism she's just turning 5 in August.

In a few weeks the intrusion of strangers will stop when the youngest turns 3 and moves on from the Early Intervention program in our state. I seriously can not wait for this day. Our oldest daughter was in the program for her own issues so we had a year of therapists coming and going. It only ended about 7 months before our little one started her therapy.  So basically it's been almost 2 full freaking years of strangers coming to my house. Two full years of me waking up and asking what day is it, and who is coming today? I mean it's not like my kids are finally going to sleep in til like 7 or something but I'm just glad I don't have to get out of my pj's right away.

A year ago I was just a mom of two toddlers one with issues who was such great progress at school that they call her a class mentor she rocked so much. The other didn't talk and had just gotten the ear tubes in, in hopes that would solve her issues. It did not. We then started full on into our second journey into the world of therapy.

A year ago I wasn't an angry Mom. Yes I am angry she has Autism. That does NOT mean I love her any less. I am angry that the little girl who would give me kisses when asked can't/won't do that anymore. I am angry that she hit's herself in the head when she get's frustrated. I am angry that she doesn't get to be normal and that her sister doesn't get to be a normal big sister. I make no apologies for those feelings.

But I am still grateful for every minute of the day that she is here. I know what it's like to lose a baby. I know how lucky we are that she is physically healthy and doesn't have to go through chemo or dialysis or anything like that. I know how lucky we are that she doesn't have to take meds 10x a day to keep her alive. She's just a little girl who can't talk and has sensory issues that impede her ability to use her words she has locked in her head.

Maybe one day when she's an adult she can tell me she's sorry for all of the head butt's and hair pulling she does to me but today I know she doesn't mean it. So maybe that's what get's me through my days. I know she doesn't mean what she does but it doesn't hurt any less.


  1. First of all, your girls are gorgeous! And I would vote for wiping these holidays off of the calendar because they just serve as another way to remind us that our life isn't like the TV commercials showing kids bounding into our rooms with breakfast in bed. They are just like any other day with our kids. I hope for all of us that someday our kids will be able to acknowledge and appreciate all that we've done for them...until then, it's just us wishing each other Happy Mother's Day and trying to be here for each other!

  2. (((((YOU)))))) Happy Mother's Day. Those are BEAUTIFUL faces :)

  3. Hi, just stumbled on your blog somehow. Your girls are gorgeous.

    Mother's Day and the parade of therapists coming in and out of the house are two things I'm glad to be done with for awhile.