Wednesday, February 11, 2015

that one entry where i go off on a tangent because i am frustrated.

I have been putting off writing this entry for nearly a week.

Because I don't have anything nice to say about Friday's appointment.

And I want to follow that old adage that goes "If you don't have anything nice to say, don't say anything at all." I was raised on that proverb.

Yet, I want to say something.

So I guess, I will go with this. There is still this huge misconception in the world that doctors no longer treat people or families with autism like they used to. That the old days of "your son/daughter will never (fill in the blank)....." are gone.

They are not.

Those doctors still exist. And I say "those doctors" because this doctor referred to Maddy as one of "those kids" (with autism) not once, twice but multiple times at the appointment.

"Those kids" can have normal EEG results. No one really knows why "these kids" think they way they do or why "they" have more headaches or stare off more.

And it bothered me. It bothered me so bad I wanted to scream.

She isn't one of "THOSE KIDS." She is MY KID and her name is MADDY.

He painted a very bleak - there's nothing i can do for you so I don't know why you are wasting my time - picture and sent us out the door. He does not believe she is having silent seizures. She had a chromosomal blood draw for a test that he basically said meant nothing 95% of the time but we did it anyway. That 5% means something to us.

I have absolutely nothing nice to say to that man. I hope I never see him again.

There is absolutely no reason to treat anyone like that.

I feel for every parent out there today who learns that their child has autism. I pray they don't encounter the types of medical and psychological professionals that tell them "they don't know why these kids have autism nor is there really anything you can do for them". I have seen with my own eyes, the hope and the joy and the reality that treatment can do. My child when from not speaking to full sentences and eye contact. Recovery/Remission does happen.

I don't care about why or how she got it. She has it. So let's move forward from that. There is no time for why. There is no point for why. There it is.

Yes, we need to discover as a society why and how autism occurs but for all of us IN it - it doesn't matter now. All that matters is how to HELP them.

So what happens now?

That's what has been buzzing around both Justin's and my own head. She is going to OT tomorrow - and despite recommendations to see a new OT person, we are going with what we know. The new place had a horrible time getting back to us with scheduling that I got annoyed and gave up. We'll go with where we were and see what they say. She will go for her speech evaluation at the end of the month.

We go back to Dr. MAL on Monday.

I am frustrated and annoyed with how difficult it is for a parent who actually WANTS to help her child. Imagine the kids of the parents who don't put in the effort. Because "those people" exist too.

You have to be so careful when you group people. You have to be extremely careful when you talk about autism. The spectrum is vast and every kid on the spectrum is unique just like every one of us is unique. I don't like calling Maddy "autistic" because it does not define her. She HAS autism - she isn't autism. She can only represent herself and her life on the spectrum. Is she one of "those kids"? No. She is Maddy and she has a mild form of what is turning out to be Asperger's Syndrome after being in remission for Autism Spectrum Disorder. Just like Eva isn't one of "those neurologically normal functioning kids"  - she is Eva and she has been healthy all her life.

Am I being hyper sensitive? yes.

I don't care.

You can't be an advocate if you don't love the individuality that you advocate. 

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