The Summer of Suck

Today while driving my 5 year old who has been driving me absolutely INSANE announced, "I can't wait until Serrie doesn't have autism anymore so we can not spend all our time on her". As I drove I couldn't answer. My throat hurt. My eyes stung and the older girls who usually snap back with a sarcastic comment said nothing.

Truth is, this is the beginning. Its the beginning of a ride I never planned or intended. Its the beginning of a journey that will give us more understanding of a disorder I thought I understood with a child who struggled with sensory issues but its a disorder that I am just learning to understand.

I took the bull by the horns. I got her evaluated because something in my gut said something wasn't right. I got her help and took all they offered. I spent a little more than I should have on every item ever therapist told me to purchase. I wanted to make this disorder disappear and I wanted it gone. Now.

Truth is, it will most likely never be gone but we are already seeing change. Change in me, change in her and change in the rest of the family. Most good. I no longer freak when I see parents doing things differently (except regarding car seats atop shopping carts). I also no longer have the frustration regarding Serrie's behaviors because what I believed was true, is. She can't help how she is and if she could, she would. Serrie has also changed. She has therapy nearly every day. Sometimes twice. Her once crazy meltdown that lasted the entire time a therapist was here is minimal, if at all now. She's talking a ton. She looks at us, she smiles and she is engaging with other kids. THIS IS HUGE.These changes however come with a price. The price is the other kids.

It doesn't matter what I do. Playdates, sleepovers, their playing elsewhere, extra activities, camps, VBS, excursions on days off, trips to the library, opportunities to do library activities, visits with old friends...nothing seems to make them happy and nothing seems to be to their expectation.

I had no expectation going into this summer except it would be unlike any summer I have yet to have. It has been just that. Its been busy. Its been as if we were in school anyway. Its been a summer of short tempers, extra tantrums and arguing and its not including the child with defined struggles...its everyone else.

As we drove and my son hoped for this to go away, I couldn't help but hope too. A few friends, also walking this road have reminded me it doesn't matter how long you are living with a child with this diagnosis, there are ups and downs and they never go away. The downs really suck. They make you question yourself, your parenting, the world around you and if you could have changed the situation for the better but truth is, I am doing the best I can.

It may be the summer of suck but as I am reminded during this summer of suck, my kids are learning too. They are learning to accept change, to love others no matter who they are and they are learning that we are a family and family comes first no matter what child needs to be first and when.

Comments

  1. Knowing kids, there is always something to grumble about. Even if this was a "normal" summer, you'd get complaints. Your kids are having a good summer and they are part of the team that is helping Serrie. I see patient interaction and solocitousness and help. I've seen your kids use her sensory brush, just picking it up and doing it. They try to pinpoint the sources of her frustrations and alleviate them. They tell her "no" when appropriate. They really are part of your team and I love them so much for that and I'm proud of them.

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