Full Hands and Full Hearts

In celebration of World Autism Awareness Day, I thought I would share how autism has personally affected my life. Most of this isn't new to anyone who really knows us... but I wanted to get it all out there for those who might not be familiar with our background story. Also, just because this is written from my perspective, don't think that the geek wasn't involved 100% of the way on this journey. I just can't speak for him...

As most of you know, DD was diagnosed with autism in October 2006. Our experience isn't so different from many of the other stories I've read. She seemed to develop fine for a while- perhaps a bit delayed but nothing serious. Then, in January 2006, at about 16-months old, she developed a stomach bug and was hospitalized overnight. It's almost like a light went out in her after that. What words she was saying were gone; in fact, much of her personality was gone. She spent most of her days rocking and moaning on the sofa, staring off into space. I would like to say that we were able to begin treatment right away, but we had difficulty getting her diagnosed. After months of arguing with our pediatrician (always get a second opinion people), we were finally able to get a diagnosis from our school district and a child psychologist.

Our son's story is a little different. We really thought were out of the woods with him. He was talking quite well for his age. He loved playing with toys (which DD never did). He loved numbers, letters, shapes, colors... he actually seemed rather advanced. When he was around 18-months old, I started to notice little characteristics occurring. He started hand-flapping and covering his ears (both are autism traits). He also started to exhibit obsessive behaviors and sensory issues. It all happened rather quickly. I started noticing things... and not long after I remember the geek asking me, "How long has he been flapping his hands"? With that simple question, I knew. He continued regressing, stopped talking completely and hasn't spoken since. We were able to have his diagnosis within a months time just before he turned two years old.

If I thought the diagnosis' were difficult (which of course they were), I had no idea what I was in for in the future. I can't even really say now that autism affects my life- AUTISM IS MY LIFE. Day in, day out. The kids' schedules are full now- developmental preschool for both, 20-25 hours of therapy each per week. Rarely is there a time when a therapist isn't in our home. It's as though both kids have full-time jobs... at 3 and 4 years old. They are the hardest working kids I know.

But each are showing so much improvement particularly in the past 6-months. DD is nearly potty-trained (which is extremely difficult with children with autism). She also knows many of her body parts, can wave, clap, shake her head no, nod her head yes... so many things that come naturally for other children but needed to be taught to her. She will give kisses now... she smiles and laughs each and every day. She does wonderful in school and even has some friends now. DS has been tough, but he is also doing great. His sensory issues get in the way of some of his progress, but we are working on that. He also has some newly acquired obsessive behaviors (lining up cars especially) that have been difficult to break. But he is only 3-years-old and we are so optimistic that he will do great in the coming year.

Both of them are also using PECS (Picture Exchange Communication System) which is essentially using pictures and symbols to "talk" to someone since both of them are non-verbal. We are anticipating buying a talking device for DD in the next year or so which would "talk" for her through a series of button pushes. Talking has been the most difficult part of both of the kids' diagnoses. Neither of them has spoken for years now. Emotionally, that is the hardest part- I have never been called mommy. They have never said I love you. Not with words of course... though they are quick to give hugs and kisses. They both show signs of being able to talk, but it is a slow process.

Most of the time, honestly, I don't really think of them as having autism. Maybe it's because it's both of them... I don't have anyone to compare them to. This is how they have always been. I know they aren't "typical" children... but honestly, typical children often wear on my last nerve. At least our kids don't complain, whine (too much), through tantrums at stores. Sure, we have our own issues, but most families do. They are generally well-behaved (especially for children with autism)... and they ask for very little from us. Simply love and attention.

I still find it amazing that with 1 out of 150 children being diagnosed we are often stared at in stores and restaurants. Many people don't understand why the kids aren't able to talk. Strangers stare when DD rocks and moans in the shopping cart. Admittedly, it is difficult to take them places- though that is probably more because of my discomfort than the kids'. But we are working toward being able to do more things with them. In my head I know that we have a long time to deal with this... everything seems to take longer than we want!

That is why World Autism Awareness Day is so important to me. It is one day a year to remind others to show compassion and understanding for those who are affected by autism. I certainly never thought it would be me. I could never have imagined that this would be my life. It has been a difficult couple years full of confusion, anger, tears... pretty much every emotion a person can feel. But I feel like we are only going to get better from here...

So, put on your autism awareness t-shirts and spread the word today! And don't be so quick to judge someone you might see out on the street or in the store. You don't know what's going on with them behind the scenes... you don't know their story. I'm sure, just like me, they are only doing the best they can!

Also, disregard any grammatical or spelling errors you might find in this post! While I am typing this, DS is jumping on my shoulders, pulling my hair, trying to get me to read him his favorite book- for the 30th time today!