Different, Not Less

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“Declan, can you point to the animal in the picture?”

Declan was 2, and in the process of being evaluated for services.

Instead of answering the evaluator’s question, Declan squatted to the ground, put his head on the carpet and walked forward, pushing his forehead into the ground.

“Declan,” she continued, “which one is the dog?”

Declan stood up, ran over to her, took the card out of her hand and threw it.  Then he ran around in circles, shaking his head while staring at the ceiling lights.

“Declan,” she persisted, “Say DOG.  Can you say the word DOG?”

I realized what she was getting at, and I was getting mad.  Declan could say DOG.  We had 3 of them!  He knew all their names.  He called them.  He played with them.

“Declan say DOG!” I yelled.

But the running in circles continued.

“This is ridiculous,” I said to the evaluator, “He can say the word DOG.  You should write that down.  He can say it.  I don’t know why he is not saying it, but he shouldn’t be losing points because he didn’t say it.  He can say it!”

 

I did not accept that Declan had stopped speaking.  I knew he could speak.  I had heard him speak.  IT WAS IN THERE.  Why did he stop?  I don’t know.  We just had to get it out.

The Pediatrician recommended I have Declan evaluated for supportive services when he was 2, which is when he stopped speaking.

It wasn’t until Declan was 3, and had spent a year with those supportive services for Sensory Processing issues that I allowed for him to be evaluated for autism.  I was so confident that with all the work we had done, and all the progress I had seen in that year, he would not be diagnosed with autism.

I had felt an autism diagnosis would steal from Declan’s future.  At least the future I had planned for him.

When the evaluation came back with Autism Spectrum Disorder (ASD), I was upset.  It felt like all the work we had done was worthless.  It felt like we had failed.

I grieved.  It took me a little while, but I realized something.

I was wrong.

It also took me a little while to realize something I already knew.

Declan was perfect.

Chances are you have heard of Temple Grandin, a woman with ASD who is a public spokesperson for autism.  Just a few days ago, Ms. Grandin was named to the National Women’s Hall of Fame.

One of the things Temple Grandin has said in her talks about autism, that has stuck with me is this:

DIFFERENT, not less.

 

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I was afraid of autism before it came into our home.  I was worried what it meant and what it could do to someone.

But as far as I can see, it has only helped me help my children.  It helped me see what their differences were so I could help them find ways to navigate the world.

My kids have likes and dislikes, just like everyone else.  They seek out happiness, they have dreams.

They are just different, terrific kids.  Not less.

So when Declan was reevaluated for autism and Catelyn was diagnosed with High Functioning Autism two years later, I said,

“Good.” 

Because I knew we could help them.

Autism is not a bad thing.  In my dichotomous mind of the unknown, things were simply put into two catagories.  Good or Bad.  I was afraid of autism because I knew nothing about it.  My fear was unsubstantiated.

Then I learned about autism.  I listened to people with autism talk about their experiences.  I read other families tell their stories of autism.

I became aware of autism.  And realized I needed to rewrite my mental list.  Because autism is not bad.

Autism is different.  Not less.

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14 thoughts on “Different, Not Less

  1. I think being a mom of a child with autism is one of grief–I mean that in a good way. When you hear the news, you are sad yet relieved. Little by little, you let go of things you had thought would be their future, but then you also at the same time accept them for who they are. And sometimes this comes back up–milestones that they didn’t hit but your friend’s kids hit them–another sense of sadness and yet acceptance. I’m still doing this. My daughter turns 18 this month and I am sad yet accepting. I let go that she isn’t like every other 18 year old and I accept the gift that she is. But I still grieve–really for myself. Because she seems happy and content with what life is. But I struggle because I see all the options and paths she could be on and can’t right now. It is so hard.

    I put a notification on facebook a few days ago because my daughter is turning 18 and has no friends and it makes me sad that her big day is coming up and it seems as if no one cares. My mom and my husband’s mom have passed away. Our families aren’t really talking (I only talk to a few people in my birth family). It’s sad to me that her support system is just basically her dad and I and her 2 siblings. So I put it out there that if anyone would want to make her day by sending her a card on her big day, that would be awesome. So I got maybe 6 replies from total strangers willing to send her a card. One lady knew my sister and offered to bring over balloons and I had to forewarn her that my daughter isn’t very social and might not say hi, but that would be ok. It was cool to see people care–even if they didn’t completely understand my life or autism–they wanted to try. It’s more than I have gotten from my own birth family and it means so much to me. And no, autism isn’t terrible. It’s just different.

    1. I understand what you are saying – I wrote a piece on it once in this blog called, “In His Time.” I agree, it can be very hard to look up and see what other kids of the same age are doing, and realizing mine can’t do those things. But I am thrilled for what is accomplished. And you’re right, there are things we would have signed Declan up for – like little league or soccer – if he was able. He is not missing those things. He is happy and content. But I think my husband and I would have liked for him to play. You’re right, it’s just hard.
      Happy birthday to your daughter! That is so nice of the people on Facebook. Really nice to see strangers reach out and try! I hope she has a wonderful day. I will be thinking of you and your family this month, sending good thoughts!

  2. That’s a great attitude. Good. Now you know. If anything, not knowing often results in fear or ignorance. Not just with autism but really, with any human condition. I’m deaf so I often have to deal with people who don’t know how to communicate with deaf people regardless of whether it is reading/writing, sign language, or liipreading/speaking.

    I also notice the more people learn, the less uncomfortable they are around me. In fact, they take pride in knowing me because they usually end standing up for me around others who do not know about communicating with deaf people.

    As for those who have autism, it is something I admit I am learning about because as a deaf person, I am used to body language, facial expressions, and other visual cues, which is not as easy to interpret by those who have ASD. But I learn from parents like yourself and as a result, I learn to communicate in a new way.

    How to define that way? I don’t have the words for it other than “interpret” because reality is, everyone communicate differently and interprets differently. Great job with the prompt.

    1. Thank you! I agree – not knowing often does result in fear and ignorance. I am guilty of that, and learned that I was wrong.
      That is interesting – I notice the same thing with Declan. In that, the more people are around him, the more comfortable they are with him and are more likely to help him out in the community with others.
      Wow, yeah – I guess that would be hard. Both of my kids on the spectrum have a hard time with social interaction and reading social cues. You’re right, though. Everyone communicates differently, and they could learn a new way too! Thank you!

  3. Beautifully written. Full of hope and honesty. I love that “Autism is different. Not less.” That can apply to so many things in life. I also love the little girl in her tutu with her beautiful balloons and the quote with it. I believe we are all uniquely made and we are all uniquely beautifully. God made all of us as His beautiful gifts. We are His beautiful gifts to be celebrated everyday! Great post. In fact I am going to reblog it. Thank you for your post. Love it..

  4. I think your son is MORE, not less! With the help he is getting to learn how to communicate with others, I see him as a great story teller in the future! What medium will he choose to work with, who knows? But it will be a GIGANTIC delivery of quality entertainment.

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