Tag Archives: ASD

The more things change…

It’s 3PM on a Saturday, I just poured a glass of wine.

Stampy just took the kids to a farm to run around and give me some space.

It’s been a long week.

We had some difficulty at school at the beginning of the week. The good thing is, we have a teacher that took notice and wants to help. The bad thing is, it probably won’t matter.

I realize I’m pretty cynical, but we’ve been down this road before and the more things change, the more they stay the same. I have a hyperlexic kid who can’t communicate. I have a child riddled with anxiety. I have a brilliant child that can not figure out what to do unless told specifically “do this”. No matter the challenge or developments, these things remain the same. These are the roots of our problems. These cause no difficulty (yet) in school so help is often hard to come by.

Molly’s teacher told me I seemed unhappy at our conference. I’m not unhappy, I’m just lost. I don’t know how to help. We try and we try but we aren’t always successful and sometimes we are just out of ideas. I’m tired. I feel like Molly is often crying for help in her own ways and we can’t help her, sometimes when I try I feel like I’m crying for help and no one is listening.

I face the challenge that it’s hard to describe Molly. I had an “aha” moment today at therapy but it took three years of observation to get there. It came after Molly’s teacher informed me that she noticed Molly seemed lost in class one day. Molly was just standing at her station, not asking for help and not doing anything. I know that lost look. Then we went to an activity at her school. I told her she could go with her friends to the different stations but she just looked at me and looked scared. So off we went to the first station together. Then I saw it. It smacked me in the face. She couldn’t figure out how to decorate a cookie because no one gave her instructions. In fact, she couldn’t even figure out how to hold the plastic knife to spread the frosting. I realized then that she was the same three year old wondering around her preschool class without doing anything because no one told her what to do. Which made me realize why sometimes we have so much difficulty at home. I’m forcing independence on her and she doesn’t know what to do.

Then I felt sad. I felt awful it has taken me three years to catch on that she never developed out of that trait. I realized we’ve grown but we haven’t changed. I’m still as lost as I was three years ago when this battled started and she’s still the little girl that is lost.

Things have stayed the same.

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You have nothing to worry about

At 9 months old, I informed our pediatrician that I was concerned because Molly didn’t respond to her name or really turned when we talked to her, but I knew that she could hear. He replied with “the important thing is that she can hear, you have nothing to worry about”.

At 20 months old, I told the nurse practitioner that I was concerned about some behavioral issues Molly was having. She replied with “It’s very normal at this age, you have nothing to worry about”.

At 2 years old, I was concerned still about the length of temper tantrums we were having and the face that cutting her hair seemed to settle them. Again, I was told “you have nothing to worry about”

By 3 years of age, I said I was concerned that she didn’t tell us she was hungry or thirsty or communicating, wasn’t potty training, was screaming for hours on end. After spending 10 minutes with us, the pediatrician said “She’s not autistic, you have nothing to worry about”.

Only I did.

I had everything to worry about.

She is autistic. Her behaviors were not normal development and I was not being heard. So, I did what any sane person would do that was quickly losing their sanity and went somewhere else for help. But the words still rang loud “she’s not autistic”. I believed those words.

We spent 2 1/2 years in and out of therapies and met with multiple specialists, all who said the same thing, “I think she may be autistic”. I believed those words.

I was confused and honestly, I don’t think I wanted to know the answer. But we hit a turning point. We hit the point where we needed a diagnosis to know which therapy road to travel, which specialist to see and to get a lot of this covered by insurance. So, we went.

We traveled over an hour for several appointments to a wonderful pediatrician. One of the first to spend significant time with Molly. The one who gave us the answer we needed. The answer that Molly needed. The answer that seems to make our life harder, but ultimately will make our life easier.

She is autistic.

She is sensational.

We had everything to worry about.