Autism: We Don’t Whisper My Daughter’s Diagnosis

Autism: We Don't Whisper My DuOn June 22nd, 2010 a sweet lady slid a piece of paper across the desk to me and my husband. After days of testing we were finally going to have an official diagnosis. I didn’t need it, I knew what was different about my daughter and I knew what was causing it. I knew she was autistic so I was shocked when the top of the paper read “Mental Retardation”.

I wanted to pass out.
I wanted to slide that paper right back to the lady.
I wanted to punch her in the face.
I wanted to run out the front door and go get my baby.

I didn’t know what it meant. I simply didn’t understand or expect it.

After a quick explanation I came to understand that any mental disability was categorized as mental retardation, at least at this place it was. Mental retardation is a broad spectrum diagnosis and encompasses so many different, more specific diagnosis.   My gut feelings were right and my daughter was officially diagnosed with autism.  With the diagnosis we were also given a notebook packed with information, classes, groups, therapists and facilities. It was suggested that I sign her up for everything under the sun, get her 5 days a week therapy, three different kinds of therapy and join a support group. They even put us on a waiting list for financial assistance. The waiting list is 10 years long. Yes, 10 years!.  It all made it seem like we were headed for a lifetime of struggle and pain.  That binder sat heavily on my lap during the car ride home.

I got home and threw it away.

My husband and I decided from the start that we would let our daughter be exactly who she was designed to be. We both understand that many families opt for the therapy and I have no doubt that it does great things for the kids that participate in it. We understand that some kids are more severe than our daughter and possibly require therapy to function. We understand that families make different choices and all are in the best interest of the child. We understand that intense therapy is the right choice for some. That just isn’t the case for us. We aren’t against therapy and we respect families that choose it for their child, we simply don’t think it is what’s right for our daughter.

Puzzle pieces pic

Our daughter is, let’s just say she’s a little left of center and we have no plans of getting her on the mainstream path.

She likes to wear winter gloves to school in the heat of summer. She taps the floor in front of the church before we enter. She wears bright orange rifle range earphones to school when she needs them. Her clothes never match and her hair looks like we haven’t brushed it since birth. I’m praying dreadlocks come back in style.  She changes her name once a week and insists we all stick to it. Imagine the looks we got on vacation when we had to call her Stealth. Who in the world names her kid Stealth?  If she makes eye contact with you then you are in the circle of trust. She speaks in commercials, which can get pretty annoying and very confusing. Several days in a row she would whisper in my ear, “I like to watch you sleep.” I almost moved into a hotel and left the rest of the family at home. Turns out it was from the trailer for the new Planes movie, WHEW!  Any change in routine will likely send her into a world we can’t get in and she can’t escape from. We’re always on guard when we are out in public because she has absolutely no filter and will say whatever is on her mind. Like the time I took the girls to pick up a donation from a nice elderly woman and my sweet daughter told her “Well old lady, you sure are nice!”

Sometimes those things can be exhausting but I have no plans on changing them. Those are the things that make her who she is. We cope with situations as they arise. We often eat in random places in the house because that’s what she likes, It’s become our new normal. We have a strict family routine that is very rarely messed with or changed.  We avoid places that might be difficult for her to deal with and as a family we accept that we might miss out on an event or two for the sake of our sister and daughter. We’re cool with it.

We also celebrate victories that I never thought we would.

The day she came home with her kindergarten school picture in her back pack I was nervous  for her because I didn’t want her school pictures to be dramatically different form her two triplet sisters. Score! She was looking at the camera and had agreed to not wear her earphones.  The day I watched her sit still and quiet through the entire talent show at her school without completely melting down due to a certain song being played or the length of the event was a  huge victory for her. We celebrated the day we  watched her faithfully serve donuts to the homeless at Church Under The Bridge and not a single inappropriate thing came out of her mouth, she even coaxed the people to come to her tray of donuts as opposed to the other kids there with a “step right up, step right up” slogan.

We have chosen to try to see the world through her eyes instead of trying to force her to see it through ours.

Our family has chosen not to mourn the loss of all the things “normal” kids might experience, instead we  celebrate all the things that make her special and unique. She wasn’t designed to fit in and that’s by far my favorite thing about her. I’ll admit that when I decided to become a mom I never in a million years expected that any of my children would have any sort of  diagnosis, physically or mentally,  I don’t think any parent does. During my pregnancy with the triplets I thought about what they would look like, prayed that they would be healthy and planned all the wonderful normal milestones we would get to celebrate.  I never thought that one of them would be diagnosed with anything.

On June 22nd, 2010 a sweet lady slid a piece of paper across the desk to me.  Since that day my family has had a choice. We choose to celebrate what was written on that paper. We choose to be better and not bitter.  I knew that piece of paper was going to change us but I never dreamed that it would be in a way that would make us happier, better and closer than I ever thought we would be. It made our family an indestructible team.   We have accepted that piece of paper but we have chosen to change its title to Fearfully and Wonderfully Made.

We don’t whisper our daughters diagnosis in hopes that no one will hear it.

We sing it loudly in hopes that everyone will hear how beautiful it is.

Team Justin

 

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6 Responses to Autism: We Don’t Whisper My Daughter’s Diagnosis

  1. Julie Metcalf September 6, 2014 at 6:48 pm #

    Well said! We have an 11 year old daughter with Autism and deal with many of the same quirky behaviors. 🙂 I love your positive perspective!! Thank you for sharing and being an advocate for your daughter!

  2. Bonita September 5, 2014 at 10:54 pm #

    This is truly precious. It made me open my heart and tear up. Thank you for posting it. It’s too precious. (And you’re children are beautiful!)

  3. Jen S September 5, 2014 at 12:57 pm #

    I’m so glad I read this. My son has never been officially diagnosed because I didn’t want some of those experiences & to feel the pressure to “fix” him. Now at eleven, it seems the onset of puberty has increased some of his sensitivities & quirks. We were starting to wonder if it was time to seek a diagnosis/treatment, but didn’t feel happy about it. I feel a bit more secure with my decision now knowing we aren’t the only ones choosing this path!

  4. Stephanie September 5, 2014 at 9:54 am #

    Well done! You inspire me to be a better mom, woman and Christian in so many ways.

  5. Patti September 5, 2014 at 9:19 am #

    Beautiful and full of courage.

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  1. I’m on the mic today over at Alamo City Moms Blog talking about autism. | women with worth - w3 - September 5, 2014

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