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Tuesday, December 18, 2012

8 Things I wish someone would have told me when Oli was born.

"None of us is as smart as all of us." Eric Schmidt

1. I am my child's parent 1st.

I am not her therapist, or teacher.  I am definitely not her drill sergeant.  It's okay to just be her mom sometimes. Of course, I still have to work with her at home.  But, I no longer have that tremendous amount of guilt when I just cuddle her instead of doing physical therapy exercises.  I don't feel guilty when I carry her up the stairs once in a while instead of forcing her to walk up them when she doesn't want to.

A woman from the Texas School for the Blind and Visually Impaired told me this when Oli was 4 years old.  It was the first time anyone ever gave me permission to "just be her mom".  I will never forget that because it was the gift that I had been aching to receive since the day she was born.

2. Think about today.

Boy, does this one catch me up sometimes... I don't need to worry about the things that Oli will or won't do 10 years from now. (I really like to do this!)  It just weighs me down when I do.  I have realized that she can do what she can do today and that is just fine.  I really can't tell you what her future will look like but, for right now, what she is doing is perfect.

3. Don't be afraid to be Donald Trump 

If a doctor talks about Oli while she's in the room like she is not even there, I fire them. 

If a doctor is not compassionate and does not realize the he/she is treating my whole family and not just my little girl, I fire them.

If a doctor or therapist seems annoyed that my 2 year old is crying and my 7 year old keeps interrupting because he wants me to look at his latest accomplishment on his Nintendo DS game, I fire them.

These doctors and therapists have no idea how many times I have dragged my other children to these appointments. How many hours of their short lives have been spent in waiting rooms and in the car driving to different appointments.  If they cannot respect the fact that my other children are also affected by Oli's disabilities, we find someone who does.

4. Google is my friend.

5.  Laughter is an even better friend.

6.. I probably have Post Traumatic Stress

Oli's wonderful pediatrician in Las Vegas, Dr. Hyun, told Seth and I this while we were sitting in her office one day. 

It could have been our red swollen eyes, lack of matching clothes,all around disheveled appearance and the "Holy shit! What just happened?" look on our faces that tipped her off.

It was the first validation I received that all the craziness in my head had a diagnosis.

7.. Functional not Perfect

So many therapists would spend hours trying to get Oli to do things perfectly.  She was never successful because the reality is,  no child does things perfectly when they are just learning to do something. Special needs or not.

Oli's new physical therapist, Cathrine, was working on trying to get Oli to stand up from the middle of the floor. (We had been working on this for a couple of years with different therapists.)

She told me on her first visit, "I don't care how she does it.  I just want her to be able to do it. It doesn't have to look pretty."

And guess what....Oli did it!

8.. Special = Expensive

Having a special needs child is very very expensive.  I had to claim bankruptcy when Oli was 6 months old because of the mounting medical bills, co-pays, and things our insurance didn't cover.

 Very Special = Very expensive

(It's okay. I'll still take very special, even though it means I'm broke all the time.)

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