Different not Less

100_2333Ava is my eight year old. She is an adorable, smart and funny. Sometimes she is a royal pain in the rear. Sometimes I think she might be the reason I drink wine at 5pm.

Born at 35 weeks weighing 5lbs 12oz, she was a tiny package of joy.

Ava met her milestones. I have on video her saying her first word … “mama” of course (like what else would she say?). By 12 months she had a nice little vocabulary going. She was cruising the house. She played. She laughed. She was a little quirky, but she was doing all the things she was supposed to do.

By 14 months she was silent. It was as if someone came in one night while she was asleep and stole all her words. She stopped making eye contact. She was like a hollow shell of who my child used to be.

She began doing repetitive things. I can clearly remember her going under the table, walking to the corner, sniffing the wall, back under the table and then tapping my leg twice. If I let her she would do this for what seemed like hours.

Before I became a nurse I was a manager of a group home of Autistic Children. I knew what these signs meant. So reluctantly I made the phone call to have her evaluated. At 18 months they told me that she had Autism.

Soon my house was overtaken by ABA therapists, Speech therapists and Occupational Therapists. They were there in shifts from 8am – 4:30pm. FIVE DAYS A WEEK. I am not going to lie….it was a lot! My house did not belong to me anymore. It suddenly became a full-time Ava Center. It was hard work for such a little kid. It was inconvenient for all of us.  However looking back I thank God for each and every day of it.

Slowly she began to point for the things that she wanted. She began to make eye contact here and there. But still my house was so quiet it killed me. Well Rome wasn’t built-in a day and neither was Ava.

Then one incredible day after several months of hard work; she said, “I want more bubbles”. Just like that, during her ABA session with one of our favorite therapists Judy. I.Want.More.Bubbles. Someone get the girl some bubbles!!! I was so happy I cried. How does a kid go from not speaking for months to a whole sentence? I have no friggin idea! But it was one of happiest moments of my life.

After lots of therapy and hard work Ava is currently in a 15:1:1 in the 3rd grade. She doesn’t stop talking… except for the times she goes to “Ava World” as we call it. She can be a little bit crazy at times, but then very introverted in new situations. Some days you would think she is not Autistic. Other days she is full-blown. It’s a roller coaster ride.

I am her balance. Her go to. Her crutch. Since she was small she always has hung on me when she is out of sorts. She still does. Sometimes it is incredibly annoying. Especially days when I am stressed about all the other things in our hectic lives. Sometimes I yell at her when she does it. Then I beat myself up for it. But in all fairness, do you know what it is like having a 60lb almost 9 year old hanging on you while you are trying to do a hundred things???

She is a trooper though. Autistic people need schedule and structure. That is something that I can not always provide in a home where we could be in the hospital with Mia at any given moment. Somehow Ava always pulls through.

Things are ever changing. Not everyone’s 8 year old makes really odd and loud sounds at inappropriate times. Nor do they only eat a menu of 14 foods every single day (how does she not get bored with that?). Not every family has to have a months supply of ketchup on hand at all times. (Heinz should really give me some freebies, don’t you think?) Ava may not be your average kind of girl, but then we are not your average kind of family.

Ava is “different not less”. Don’t forget to light it up blue for Autism Awareness this month. Ava will appreciate it and so will I.

~DIMG_0643

 

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