Thursday, April 02, 2009

April 2nd: World Autism Awareness Day

I told Jaina that it was Autism Awareness Day today and she asked, "Well, what are you supposed to do with autism today?"

Wow, that's a great question. Autism means so many different things to people. Because we have autism front and center in our lives every day, its hard to imagine that there still is a need to increase awareness about it.

Some people hear the word "autism" and immediately think of the Dustin Hoffman and Tom Cruise movie, "Rain Man". Remember that old 1988 movie? It was one of the first feature films to include a character that was an autistic savant. But less than 10% of the population diagnosed with autism actually can be considered savants. So, this is not a very common view of how autism can affect each individual.

As a person on Mothering Dot Commmune's SN board says, "If you meet one person with autism... well, then you've just met one person with autism." Children with autism are as unique individuals as neuro-typical children are. I think its important for society to recognize the entire autism spectrum from ADHD to Asperger's to PDD-NOS, to High Functioning Autism to Classic Autism to Kanner's Autism. All the people on this spectrum have some things in common in terms of brain wiring, but its more important to embrace the person, not the label.

Our autism journey more than likely started before Jayce was even born. However, its been only one year since getting his diagnosis on April 7th, 2008, just before his 3rd birthday. Just a year. I feel like its been much longer. Maybe because we suspected it at age 17 months and knew in our hearts at age 27 months? Or maybe because we were very quick to accept his diagnosis, learn from it, and move on.

Jayce has come so far in just one year. One year to him means roughly 104 sessions of Occupational Therapy to work on balance, gross motor skills, fine motor skills, and appropriate play. He's received 130 sessions of Speech Therapy where he's learned how to put random words into sentences, how to answer yes/no questions, and to ask questions himself. He's received over 30 Feeding Therapy sessions and gone from eating 10 foods to being able to try more than double that. But I think Jayce's greatest accomplishment this year, by far, has been socially. He has friends! He asks to play with these friends! He shares with his friends. He's learning how to play with toys that don't contain batteries for once!

I'm so proud of my boy :)

I wanted to let all of my blog readers know what it means to accept autism. It means I'm not looking for a cure for Jayce. He is who he is, that is how his brain is wired. There's nothing wrong with him. There's nothing broken that needs to be fixed. That doesn't mean that I don't want Jayce to have therapy and to improve upon the developmental delays that he has. If my child couldn't walk, I wouldn't hesitate to buy him a wheelchair, right? If my child was deaf, I wouldn't hesitate to teach the entire family ASL, either. But I'm also not looking to make him "normal". Just think, if everyone was neuro-typical, the world may not have as many sculptors, artists, poets, and authors, all who have been diagnosed with an Autism Spectrum Disorder.

But for all the positive outcomes that happen when autism is thrown in the mix, it does have its downsides. The self-injurious behavior, the seizures (which thankfully it has been ruled out that Jayce does NOT suffer from mild seizures), the sensory issues, the feeding problems, the sleeping problems, the frustration from speech delays and communication misunderstandings and processing disorders, etc.

Jayce is all of that and more. We have our rough times and our obstacles. But we have many more positive times and successes. Those are little and may not seem big to some, but for us they are the world.

When Jayce was 18 months old, he couldn't make eye contact or answer when his name was called, but he knew all of his letters, shapes, colors, and numbers up to 10.

When Jayce was 24 months old, he couldn't verbally put 2 words together or play pretend, but he learned how to work a computer with a mouse.

When Jayce was 27 months old, he entered therapy programs through our state's Early Intervention program. His first two word utterance was, "Cat, please" after being instructed by Carmen to ask for the cat block he wanted.

At age 3, Jayce learned how to eat with a fork, but didn't like to unwrap presents or play with friends at the park.

Now at almost age 4, Jayce can help undress himself, is learning how to do snaps and buttons, is trying to peddle his tricycle, is sitting criss-cross-applesauce instead of in a "W", is able to feed himself with a spoon without spilling, and drink from a straw. And many, many, many accomplishments.

I just want Jayce to be happy. Isn't that what we want for all our kids?


Yesterday we all went to EdVenture children's museum in Columbia, SC. We have been to several different children's museums in Georgia, North Carolina, and South Carolina since Jaina's been little and its always an unknown to how Jayce is going to handle the environment and stimulation. He loved it, this time! He didn't even want or need to be in his stroller. He didn't fixate (or get "stuck") on any one activity, either. Jaina and Jayce were free to explore the entire museum wherever and whenever they wanted to. I'll be posting our pictures tomorrow, but wanted to go ahead and show these of Jayce. He absolutely loved the Curious George exhibit. When it was time to leave and head to the gift shop, Jayce reached for a Curious George stuffed animal. I asked, "Do you want to take him home with you, Jayce?" And he answered, "NO! Jayce doesn't want to go home!" I took that to mean "yes", Jayce did in fact want the monkey but was also trying to communicate that he wanted to stay longer.

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Back to Jaina's question of the day...
I simply answered Jaina, "Well, we can take today to appreciate all the people we know and love with autism." She translated that into the idea that she should give Jayce a hug and tell him that she loves him very much :)

Good idea.

4 comments:

  1. Great post Jessie, your such a a great writer and can express your feelings and thoughts and facts so well. You are such a great advocate.

    I am proud of Jayce and all his accomplishments, especially the social skills. That is so exciting!

    And of course big sister Jaina is doing a super job as the big sister!

    Thanks for bringing attention to the awareness. You have been on a long road and your perseverance is paying off. Your children are blessed to have such a great mom, who is smart and doesn't give up!

    Love your family in FL

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  2. Thanks so much for this post! I'm excited to find that you have a blog, having recently gotten into it myself...

    As a mom I always watch my kids and wonder if "this will be the one" that has special needs. Maybe it's normal, maybe it's not, but thank you for the sweet picture of Jayce you have given me today and the perspective of a practical mom that takes and loves the challenges with the blessings.

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  3. I love you guys. ♥

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  4. beautifully written.

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Thanks for commenting!