Wednesday, April 2, 2014

World Autism Awareness Day

I thought this would be a tough blog post for me to write, but as I form the words in my mind, I don’t believe that to be the case. 

For years after Olivia was born, I wondered what she would have been like had she been born full term.  If I could take away her rough start and have her grow up with Logan, I would do it in a heartbeat.  But, as Olivia grew and her personality emerged. . .I fell in love with exactly who she is.  I don’t care what she “would” have been like because she is perfect as she is.  She is the Olivia we all know and love.

Recently, we took her to a child psychologist so that we could help her in some areas that are difficult for her.  She has some sensory processing difficulties and breaks down in tears over a pair of jeans or a shirt that doesn’t feel just right.  Eating and gaining weight are still challenges and her anxiety can be pretty severe.  I feel that life is only going to get tougher and I want to give her all the coping skills and strategies available. 

We found that Olivia does have autism spectrum disorder.  You never want to use your child’s name and the word autism in the same sentence.  However, I don’t see it as anything “wrong” with her.  Olivia is Olivia and I love everything about her.

I debated about whether to discuss it on the blog.  On the one hand, this blog is meant to raise awareness and educate people on the effects of extreme prematurity.  Autism and extreme prematurity go hand in hand quite often.  I always want to help others going through a similar journey.  But, on the other hand, I want to protect my child from being labeled before people get to know her.  The scary incident a few weeks back helped me to decide that it is worth sharing.  It takes Olivia a little bit longer to process information such as “Look out! There’s a car!”  As she stood frozen, trying to process what was being said, a car backed into her, knocked her down onto the concrete and she suffered a mild concussion.  She does require a bit more attention than your normal 6 1/2 year old. To keep her safe, I feel others need to be aware of this and it is what prompted me to share the news of her diagnosis.

Today is World Autism Awareness Day so I thought today would be appropriate to share the news. Autism has many faces and no two children are the same.  Olivia is at the high functioning end of the spectrum with fairly mild characteristics.  As her mother, it’s my job to make sure she gets all the tools available in order to be successful. I’m not content with her being successful “as a 23 weeker.”  I want her to achieve all that she wants in life. . . as a person like you or me.  I hope her diagnosis helps people understand what she needs and not define who she is.  She is an awe-inspiring, sweet, funny, energetic, one of a kind girl.  High functioning autism is just one tiny facet of who she is.  I hope everyone who crosses her path in life is able to see just how amazing she is.   

3 comments:

Julie said...

Just curious as to which psychologist you saw. We recently had Asher tested by a Dr. Paul White. We received a diagnosis of ADHD-combined and dysgraphia. Now we are having to work hand in hand with the school to make sure he gets everything he needs. Dysgraphia means that his writing will never be neat and he will always struggle with it, so we have to have guidelines in place. But his diagnosis has already brought new information to the teachers as they really haven't dealt with it. So at least we can help others in that way! Thanks for sharing!

Jodi said...

That's exactly where we are at. Now we have to make sure she gets everything she needs. We saw Dr. Patricia Purvis who actually retired at the end of March. We barely got into see her. She was a special education teacher turned child psychologist so she had a lot of insight. Best of luck to you! I know you'll be a strong advocate for him!

Melodie Martini said...

My son is 9 and has a diagnosis if dysgraphia, nonverbal learning disorder, ADHD, anxiety NA, and, hypotonia. We have been struggling with the school to get assistance for him at school but they are having trouble understanding the whole thing. They just don't get it. I have done everything I can think to do to help them understand. We are in a rural are and there isn't much help around for us. Any suggestions?