Wednesday, April 1, 2009

April is Autism Awareness Month.

Another April.
Our 5th April with Autism.

My son David has Autism.

David is also funny and loving. He loves music. He is one of those people who can hear a song once and know that song forever. Like his parents, David has very eclectic musical tastes. He still digs Amy Winehouse. He likes Motown. He likes William DeVaughn-who doesn't, right? He discovered the Gospel Music Channel.There is a singer he likes who has three first names. I have to find out who that is so I can get a CD.

David likes to know how things work. He is really interested in how things are connected and he notices if something is out of place. We moved into our house almost two years ago. David has taken the time to point out every imperfection. He should have done our home inspection.

Autism is a neurological disorder that affects three areas of development: Communication, Behavior, and Social Interaction.

What does that mean? For David that means at four years old he doesn't speak and he is not able to effectively communicate his needs or wants. Imagine that your child wants a cookie. He or she would point at a cookie or say cookie or something that sounds like cookie. For David he knows where the cookies and other snack items are kept in our home. He will grab someone, usually me, and push me towards that snack area. He will not point to the preferred snack item. He will pat my bottom until I give him the snack that he desires. That works for us, but that method of communication will not work for someone who doesn't know David.

When we say behavior is affected by autism that doesn't mean how a child acts. Behavior is anything that you do. Sitting is a behavior. Walking is a behavior. Our kids have trouble with behavior, thus they have trouble living in the world. We have to teach our children behaviors. The most simple, most fundamental behaviors MUST be taught. Over and over and over again until the desired behavior is mastered. It is exhausting. It takes weeks and sometimes months to teach a desired behavior. Things like using a fork or getting into the car independently and sitting in the car seat take a lot of effort and trials before the task is mastered.

Some may ask of those with autism are incapable of learning. The answer to that is a resounding NO! In fact, most people with autism have average to about average IQs. The way people with autism learn is different from the way neurotypical people learn. For example, David will not respond to a verbal request. I can say, "David, come here". until the cows come home. The cows will get to me before David does. A physical cue, my hands turned palms up and my motioning with my fingers for "come here" works. David has an incredible memory. During our walks he knows which yards have the flowers that I like and he makes sure to walk me past those properties. He can visit a doctor once a year, but he knows where the exam room is. There is a nail that sticks out of our neighbor's picket fence and David will finger that nail every single time.

David was born with autism. I knew something wasn't right from the time he was three days old. I couldn't put my finger on what was wrong at first, but as time went by, the signs were all there. David never looked at me or others. He would look at the mouths of people, but not the eyes. He was slow to reach milestones, which had other diagnosis to blame for that. David has hypotonia(low muscle tone) and he was very heavy, so that was the reason given for his not reaching his milestones. Me, being Momma, knew that wasn't the reason. David was diagnosed with Severe Autism when he was 22 months old.

Autism is not the same for any two people. What is true of David isn't true of his classmates for example. The way a person is affected is different.

I, like many others, viewed some Autism checklists that are available online and I couldn't check all of the boxes. Like, one of the issues mentioned on most of the checklists I saw was that a child was incapable of showing physical affection. David has always been a cuddle monster. I now know that his cuddling wasn't an attempt to show physical affection, rather, it was his need for sensory input that caused him to climb into my lap and want hugs. David also never stacked things or lined things up. He did, however, play in patterns. He had musical toys. He would turn them all on and activate certain sounds in patterns. We used to joke that he was a DJ in training, but it was no joke. It was a symptom of the disorder.

Kids with autism will typically have scattered skills. David is 4 years and 3 months old. Developemtally he's probably around 2 years. He's still in diapers. I'll admit it really SUCKS to diaper a four year old. I'm not even gonna lie! He still needs help dressing, but he has undressing down cold. He doesn't use pencils or crayons. Actually he dislikes both of those things. He doesn't speak. He will use a word once, and we'll never hear it again. It could be months between words. There are those with autism who never speak and are always in diapers.

Autism is also a learning experience. I expect things from David but I am realistic. I expect my son to be a good person. I expect him to clean up after himself and to treat people with respect and decency. I expect him to learn,to laugh and to love. I no longer expect him to speak and I'm fine with that. I know that he has a lot to say and he may never be able to express himself verbally. I will find a way for him to communicate with others. I do expect him to be toilet trained because I will be damned if I will diaper my son when he hits puberty. I just WON'T. There I said it. I expect my son to be out of diapers. It is one thing to deal with morning erections in a four year old, it is quite another to deal with that in a 14 year old. There-I said it, I said it and the world did not end and I don't feel guilty about it either!

People in the community will see us with our children in supermarkets and other places and our kids are melting down, screaming, and just plain miserable. This is not because they are naughty children or have parents that can't control them. There is something about that environment that they simply can't handle. It could be the lights, the sounds, the number of people. It could be anything or everything. The bad thing is we don't know what it is because our children can't tell us. David used to be a screamer in stores. He doesn't react that way anymore,but for about two years, going to the supermarket or Target was a miserable experience. Now it's fine, but he can't do restaurants. As soon as he's inside, it's time to go and he means NOW!

There is a very dark side of autism for the families living with it everyday. I can only speak from my own experience and I'm going to, but trust me when I say it's not easy.

Living with Autism everyday is exhausting. It takes a very deep and physical toll on the caretakers. I lost 70 pounds. Yes, 70. I only needed to lose 30. For a time I looked like walking death. David wasn't sleeping, which means I wasn't sleeping because I wasn't sleeping, I was too tired to eat. I lost that weight in a four month period. At first, no one noticed that weight loss because I was always wearing PJ pants and big sweaters. I didn't noticed either. I know that sounds crazy, but I didn't notice until I needed to buy some clothes. Then I became aware. I went from a size 14 to a zero in 4 months. THANKS AUTISM! I was totally consumed by autism and David's needs. It was awful.

I know, you all are asking how my husband didn't notice. At the time, I lived with my husband and my daughter. My husband worked full time and was in Grad school. My daughter worked full time and was a teen. They had lives, I didn't. I rarely left the house. It is still true that I rarely leave the house.

Living with Autism everyday is isolating. I do not have peers that have a child with autism. I do not have peers who have pre-school aged children. David has never had a play date. I don't have "my girls" to hang with on a Friday night. I will admit my circle of friends had always been small. My best friend has been my best friend since we were 12 years old. She now lives across the country (Love ya girl!) Finding a babysitter who can care for and understand David is a challenge. We have my husband's parents, but they are busy and involved people with lives of their own. They can't physically lift David, which is less of a problem now than it once was. David's sister has a child of her own and a life of her own so she isn't available for babysitting duties often. The last time my husband and I went to a movie together we saw Ray and I was 9 months pregnant. We don't visit people as a family because David isn't always able to visit. We are working on that now, but it's still difficult. My husband and I don't have date night due to the babysitting issues. My husband has a life outside of the home and I don't. I really resent that sometimes. It's not just that he's working, it's that he can go out on Saturdays to run errands and those errands take 12 hours. He needs to escape and relax and relate to others and he gets to, I don't. Yes, it pisses me off and yes, it's not right. It's been so long since I've had an adult conversation that I think I have forgotten how to.

Autism is tough on marriages. Amen and all that. I would not describe what my husband and I have right now as a marriage. I would describe it as two old friends who just happen to live together in a house with a really cute four year old boy who just happens to have autism. It's tough. I think if we weren't old friends and didn't share the believe that once you're married and have children together you make it work no matter what-well, we would have said Hasta La Vista Baby a long time ago. We have issues with each other. Some are more like items, but most of those issues were there before David was born. Living with autism just makes those issues harder to work through but also makes us want to work through them. I will always love my husband, and I hope he will always love me. We both love our son and that's forever and that's what keeps us going, together.

So, there you have Autism-The Good, The Bad, and The Ugly.


Hummingbirder said...

Wow! What an awesome post! Thank you for your honesty and humor! I love it. I know it's hard because of my son but he's also not non verbal, etc. It's been hard on the marriage. Amen to that! God bless you and yours.

Anonymous said...

Kelly....Chris, Lilly and I will come to your house for a play date/babysitting extravaganza! You and David, Sr. go out and enjoy yourselves....please. We live in town and want to help...Chris and I can emphathize that we never get to go on dates either. I would LOVE to see David and we have been meaning to get he and Lilly together for a play date. So...check your calendars and lets set something up. Don't be shy.