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To the mom that didn’t sign up for this: Happy Mother’s Day!

May 11, 2014



Before I got pregnant with Rett, I had my picture perfect life all planned out.  Boy scouts and soccer, sleep overs and play dates, adorable lunches and family traditions.  And that tiny little adorable human got here. And I cloth diapered and co-slept. I made my own baby food and didn’t let him watch any television.  We read to him and got involved in mom groups.  And after diagnosis, I realized that nothing that I thought mattered, mattered.  And all the planning in the world didn’t come with guarantees.


Then I got pregnant with Evie.  People asked me if it was so different.  I could almost hear them in the tiny breaks when she wasn’t screaming her head off refusing to nap.  She didn’t want to co sleep, she hated the swing.  She would fall asleep if you held her but only for 15 minutes.  Swaddled, binky, sound machine and let her cry was the only way I could manage to get her to nap decently for at least half of the first year.  I saw ballet recitals and tiny tea parties, pedicures and giggly sleep overs.  I saw dresses and tutus and bows and lots and lots of shoes.  And I thought I had figured it out, how to live realistically.  I thought that I’d gotten to the point where I could accept and be thankful for what I was given instead of jaded and resentful that everything I had hoped for seemed an impossibility.   And then came her diagnosis.


I know that we are luckier than some and that there are people that would happily trade places with us.  I know I have a lot to be thankful for both with what both kids were born able to do and also the blessings we’ve had that have allowed us to get additional support.  But there are many, many times that I think to myself THIS is not what I signed up for.  Where is my soccer and ballet recitals?  I see other people signing up for summer camps and they aren’t wondering how open the camp is going to be about having an autistic child. Will they be patient enough? Will they bother getting his attention? Will he be included, will the other children accept him? Will he be able to follow verbal commands and not get too distracted to do what is asked? Will he get frustrated when the directions aren’t clear, when he isn’t shown and will they know how to handle him?  And the mom just checks the ‘male’ box and puts in an age and sends her child off.   I didn’t sign up for this.


Autism makes lots of people uncomfortable.  They don’t know what to say to you.  They don’t know what to say to your child.  They don’t know what to expect.  They don’t know how to react.  My children at this point have virtually no established friendships with any children near us.  I feel that I myself have somehow missed out on that lesson.  ‘Finding friends for your kids 101’.   Between not being able to do soccer and all the play dates happening during therapy, I missed that course.  Now everyone’s kids are in school so there is no time between that and dinner to get together.


But the other day in OT, Rett used the word ‘next’ correctly.  He’s been saying ‘what are we doing first?’ for months now.  He had next and then he lost it.  It happens when his brain is trying to sort things out.   And any other person wouldn’t have noticed. They wouldn’t have felt the pride that I did. At how hard he works and how far he’s come. At how difficult navigating the world is and yet he does so with a smile on his face and a skip to his step.  And I get to share in some portion of that pride and happiness. Because I am his mother.  I signed up for this.


And this morning when I tried to get Evie dressed and she refused because her shirt and jeans weren’t for a princess.  And I had to talk her into her shirt being like Jasmine and just put it on and see how you like it. And in between her saying she didn’t like it and demanding I take it off of her, I pointed out something and distracted her.  I got my girly girl.  Who loves to show me a million times a day how her dress stwirls just like this.  With a clap and a smile.  Who loves to go check herself out after making sure I put in her bow.   I get to share in the pride of how incredibly smart she is along with her beauty and girly tastes.  Because I am her mother.  I signed up for this.

Hope is a dangerous emotion.  Once we allow ourselves to have it, we allow ourselves to be hurt.  Nobody knows this better than special needs parents. So yes, someday I may feel that Rett is focused enough to participate in soccer.  Or Evie might make some girly friends to have over for sleep overs.  But today isn’t that day.

However, remember all the people that did big things. That truly influenced our society.  They all had a mother who didn’t sign up for her story either.  To raise someone special, who thinks outside the box, who dares to step out of the crowd, I’m sure they all worried and lost sleep thinking is my child doing the right thing?  How much will they suffer creating a new path, asking people to think a new way?

For all the mothers out there who sat in tears as someone who was most likely a complete stranger rocked your world and dashed your dreams of soccer and ballet recitals, I say Happy Mother’s Day to you.  For the everyday fights to the bigger global battles, you are the front line.  Your child may not thank you or even seem to realize you are there at times but nobody knows him better than you.  Share in the pride, share in the happiness, soak up every ounce of what you signed up for.  And for all those mothers that came before us and helped shaped early intervention, waivers, formed support groups and organizations to help us along the way, thank you, thank you, thank you.


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