It changes nothing

And now we have a name!

We never knew where Zoey fell on the Autism Spectrum, we had a 2nd opinion today with a different Pediatric Neurologist who has just as many diplomas and degrees on his wall as the First Neurologist we saw in August.

Where does she sit on the Spectrum? That has always been my question and no one could answer me...until today! 

Zoey has Classic Severe Nonverbal Autism. 

I was praised for getting her diagnosed so early and was told she is getting more than most 2 year olds as far as therapy goes, with great Therapists. I'm doing everything I can do! I'm doing it right! 

Then why does it hurt so damn bad??? I went in there and said "Yes, I know she has Autism!" I never doubted that. I wanted to know where she was...because she can't tell me where she is...she screams out of frustration and tries SO hard to communicate and help us to help her...but it's painful! Painful for us to watch her scream out of frustration because she wants to eat or drink but the words don't come out and she can't point to what she wants, so she goes to the kitchen and screams. 

Yeah, I wanted to hear something different today...I wanted to hear "I think it's an inner ear issue that could be contributing to her lack of speech" the answer was No to that!

I watched as she turned the lights off and on in the exam room, and when we moved the chairs, I watched as she moved them right back so that she could keep doing it. I then watched as I said "all done" and she screamed at the top of her lungs and then threw herself and had a meltdown in the room. 

I finished with the Neurologist and we said goodbye, while she listened to Michael Buble's Lost on my phone to get her to calm down . We walked out with the Neurologist saying "She has great taste in music!"

She held my phone as I got her into her car seat. I gave her "blankie" and not long after she was asleep. 

I called my husband and told him about our visit and he said "it changes nothing" that is the same exact thing he said to me with her initial diagnosis in August. As I cried into the phone...he knew why I was crying, I don't care about the Autism, I wanted to hear something else, something that went like "yeah let's check her inner ear to see if there is an issue contributing to the lack of speech."

Why did I want to hear that? Watching your child throw herself on the ground because she can't tell you she's hungry or thirsty, or that her ears hurt her or she needs something. She can't point  or ask...she screams! Watching  her scratch and dig at her mouth out of frustration, because her mouth can't say what is in her head what she wants or needs. Frustration, I wanted someone to say "we can help her with her frustration!" It is excruciating and heartbreaking.  You see I can accept Autism, but the Frustration that Autism brings is not fair! I wish things could be easier for her.

She slept in the back, as I cried in the front, because I can't take away that frustration. 

I cried and tears were all down my face. As I waited in line at the McDonald's Drive up to get her chicken nuggets, which I knew she was just going to eat around the crunchy batter and throw the chicken on the floor,  I remembered my husband and what he said...

"It Changes Nothing"

* she's our child

* she has classic Autism

* we love her

* I still wish I could ease

  her frustration

"Classic autism is defined as the most serious form of autistic spectrum disorder. It is also known as ’severe autism’, ’Kanner’s Syndrome’ and ’autism disorder’.

Someone with classic autism has noticeable problems with speech, behaviour and social interaction. They are often hypersensitive and avoid contact with other people on many occasions.

This type of autism like many others is no respecter of age, authenticity, religion or socio-economic background.

Children with classic autism

A child with this type of autism is at the severe end of the spectrum which can be upsetting for their parents. This child will start showing symptoms of classic autism from the age of three onwards which include the following:

Rigid, dogmatic behaviour

Repetitive actions and speech

Self harm, e.g. hitting themselves

Withdrawn and avoids social situations

Obsessive, e.g. focuses on a single interest

The child is extremely sensitive to any form of sensory input such as touch, sounds, smell and sight. Basically, this means that they react violently to sound, light, colour, texture and physical contact. The autistic child dislikes being cuddled, held or touched in any way.

They will often be of normal or below normal intelligence. The classic autistic child will have the most difficulties with verbal language. Their speech will be severely impaired to the extent that they cannot articulate words and sentences and have to rely upon sign language and similar forms of communication."

© 2015

Melissa Cote