Friday, April 10, 2015

Celebrating Autism

April is Autism Awareness Month and Friday, April 2nd was World Autism Awareness Day.

Where to begin...  I meant to write this last week sometime but, alas, life happens and I find myself on the computer less and less, hence, the blog silence...again.  

We've been on this autism journey with Amelia for almost three years now.  It all began with a hunch that she had autism, an Autism Spectrum Disorder (ASD) evaluation that placed her a mere three points off the spectrum and attributed her ASD characteristics to a speech delay, intense (private and expensive) speech therapy to supplement the therapy provided by the school district and an IEP (Individualized Education Plan) meeting this past January with her teachers and the school psychologist which led to a diagnosis of autism.

Amelia has caught up to age appropriate speech skills and has been discharged from speech at school and we are ending the private therapy next week.  It has been a lot of time, work and money but so, so worth it.  I met with her teachers and the school psychologist a few months ago for her annual IEP meeting.  Amelia is now on a consult basis for speech (it is hard to add it back on in the future if she falls behind again, hence, the "consult" status) and autism was brought to the table.  

The school psychologist (Mrs. R) has known Amelia three years now, she knows we've always felt she was different, she knows about her ASD evaluation and it's findings.  She feels what we feel - that Amelia has autism.  Her kindergarten teacher and special education teachers concurred.  We went through the formalities, did the checklist required to "label" her as having autism and you know what?  It felt good.  When we went to Fraser in Minneapolis for her initial ASD evaluation they stressed to us that the schools over label kids, they can label kids with little reason etc and getting a medical diagnosis is the better way to go.  Ok, fine.  We did that.  She tested slightly off the spectrum and they flat out told us that if we came back tomorrow she could test farther off or totally on.  In our opinion, they dismissed us too quickly.  I expressed all of the above to the faculty at the IEP meeting and Mrs. R looked at me and said, "I've known Amelia a long time now.  I see her on good days and I see her on bad days.  Fraser only saw her twice.  I know you were never satisfied with their results and I'm here to tell you I think you are right and I agree with you.  She has autism."  

Amelia has autism.  She's not autistic.  She's Amelia and she has autism.  I can't tell you how hard it is for me to not scream when people refer to her as autistic, like it defines her.  It doesn't.  It's just a part of who she is - not what she is.

It doesn't change anything.  She's been a challenging child most of her life.  She's beautiful.  She's very smart.  She's LOUD.  She's strong-willed.  She's funny.  She's an emotional roller coaster.  She's kind.  Basically, she's an awesome kid with a little extra AU-some (see what I did there? hehe).

Emotions are, by far, the biggest struggle we have with Amelia.  She is an extremely emotional child and she lets you know how she is feeling - loudly.  It is difficult to calm her because she can't hear you over her screaming/wailing/yelling.  As a result we started yelling to be heard over her and because of that our boys now yell to be heard.  We are just a loud, loud household.  That is something we are working on.  When she is in an emotional fit I just try and calmly say, over and over, "I can't understand you when you yell.  Please take a deep breath, calm down and try talking slowly."  Sometimes it works, sometimes it doesn't.  Sometimes I don't even try and, unfortunately, go straight to yelling.  We'll get there in time.  

Amelia has taught me the importance of patience and made me keenly aware of how very little I tend to have.  Patience is something that I work on every single day.  Some days I have an abundance of patience and some days I have next to none.  I've gone on an anti-depressant to, as the doctor put it, "lengthen my fuse just a little bit" and I can honestly say, it helps.  I don't like the fact that I have to take a pill every single day but when I forget to take it, it's obvious and quickly reminds me of why I was prescribed it in the first place. 

What now?  We are in the process of setting up a second ASD evaluation at Gillette Children's Hospital in St. Paul.  Maybe she'll test the same.  Maybe she won't.  Their findings aren't going to change the school's diagnosis.  I know, in my heart, that she has autism.  The medical diagnosis is just a formality at this point - just in case we would ever need it for any unforeseen reason in the future. 

So there you have it - my daughter has autism.  She is on the spectrum...

...and I couldn't be prouder of her and I know I am very, very lucky to get to be her mom. 

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