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Mama Never Told Me

August 11, 2012

I have been inspired to write this post ever since I read another autism mom’s blog with the same theme. And I really wish I could remember who’s blog it was so I could send you to her post.  Because she probably did a much better job of writing it.  If you happen to know who’s blog that is, let me know. And before I get on to the nitty gritty, let me begin by stating that I do not actually blame my mother for not telling me these things.  Nobody can because nobody understands until it happens to them. And even then.. until you live it yourself you won’t listen.

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Mama told me there’d be days like this

There will be days like this my mama said

– ‘Mama Said’ The Shirelles 1962

Mama never told me that the child I had could be special needs.   That the ‘pregnant’ on the test strip and that growing belly and holding them for the first time make no guarantees for sunshine and rainbows.   She never told me that cloth diapering and delayed immunizations and making my own baby food and baby wearing and co sleeping and breastfeeding wouldn’t save him.

Mama never told me that therapy isn’t covered by insurance and that to help my child I would have to make the choice between foreclosing on my house or getting him the help he needs.  That there was no way for me to go back to work because I was pregnant and there was no one to take him to therapy if I was at work.  She never told me that therapy would eat up half of our monthly income. That there would be nothing left for Evie to do any sort of lessons or even preschool.

Mama never told me how draining the stress would be. The stress from the therapy we are doing. The therapy we could be doing. Is it working? Is it the best choice?  She never told me how I would feel like a shell of the person I had been. Unable to be sleep, unable to be happy, unable to enjoy my children because I am so SCARED all the time of the responsibility for this boy that has been placed on my shoulders.

Mama never told me how hard it is to figure out how to get help.  That you are handed your diagnosis and sent on your way. Nobody explains how to find the best therapists or how to get financial assistance. Nobody explains how to handle sensory issues.

Mama never told me how lonely it is when you can never leave the house because therapy is everyday.  How you don’t want to be around other people with children his age because you are afraid they will just compare him to ‘normal’ kids and find him lacking. How you will isolate yourself in hopes that it will save him from being judged.

Mama never told me how much I could love one little boy.  And if that love could be all that he needed, we would be fine. But its not.

Mama never told me how everyone who was your ‘friend’ would disappear. That you could count the people that actually called and wanted to talk about it on one hand. With fingers to spare.   Nobody knows what to say so they just say nothing.

Special needs moms hear how amazing and strong and wonderful they are all the time.  And none of us want to be. We weren’t given the choice.  We hear people say how they couldn’t do it. I guess they would just take their kids to the nearest fire station?  Or how ‘God never gives you more then you can handle’.  Which makes us feel like our strength is what caused our children’s special needs.

Mama never told me about RDI and ABA and SonRise and Floor Time and SPD and APD or ASD.  The terms and phrases that make your head spin and get other autism moms up in arms at each other as we all try to do what is best for our children.

 

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3 Comments leave one →
  1. Nichole Sabo permalink
    August 11, 2012 4:47 pm

    Well said Laura and I completely agree with you. No one can really prepare you for this.

  2. Cecilee Hayes permalink
    August 12, 2012 3:02 am

    Mother never told me that after waiting so many years for a girl that I would get the best one in the world and that I would give anything if she didn’t have to hear all the words connected with autism.Mother never told me that she would be everything I ever wished for and so much more. My brave daughter that faces each day with courage and the determination to do everything she can for her special children. How I long to spend each day with her, to take away her feeling of isolation but Mother never told me that sometimes that’s not possible. She did tell me that there’s nothing like having a daughter and she is right!

  3. August 12, 2012 9:03 am

    I can only tell you that your work is worth it.

    A serious question is why government does not support you? Why are your useful costs not covered? That makes me angry.

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