Autism Awareness Month/World Autism Day

***TODAY IS WORLD AUTISM DAY!!! SHOW YOUR SUPPORT IN ANY WAY YOU CAN!!! READ, LEARN, UNDERSTAND, HELP US FIND A CURE FOR AUTISM!!!!!!*** For lots of autism stories you can go to http://edition.cnn.com/SPECIALS/2008/news/autism/

So, as most of you are probably already aware, April is Autism Awareness Month. That sounds a bit cliche to me, being that every month, every week, every day, every minute, there is Autism surrounding our lives and family. I don't need a special month dedicated to being aware about autism. I live, breathe, eat, and sleep autism. But, for those not directly affected by autism, I suppose it does give a message, and maybe brings just a little bit more understanding about this disorder. So, that's why I am mentioning it. There are thousands of websites dedicated to Autism, and I know that television in America is hosting a special autism week as well. Even if this doesn't affect you, it may be worthwhile to check it out, just to increase your awareness of what is happening in our world today. It's scary stuff folks. And when you live it day after day, you relaize just how scary it is. 1 in 150 kids are diagnosed with autism. What will happen to our world when those little ones grow up and are running our world? How will this play out in the future of the world?

Every autistic child is different. But, I wanted to bring you an awareness of how autism directly affects my family. So, here's my autism awareness story for April.

We start out the morning. It is never fun. Kaeden struggles to pull himself out of bed every morning of the week, yet on weekends he could be awake as early as 4am. Every morning that he wakes before I do, there is the inevitable fight about what he has taken from the cupboards and hidden in the strangest places throughout our home. Mostly, I find hidden candy wrapers behind couch pillows, banana peels undeer the tv stand, half-eaten sandwiches smushed behind the table in our living room. He has an obsession with food, and is scared he will not have enough. When we eat dinner as a family, he watches as each scoop of food is dished out onto plates, worried the entire time that there will not be enough. He always takes more than his stomach can hold, due to his fear that he won't have an ample amount. If there is any left in the pan, and someone reaches to take seconds, and he worries he will want more, he begins to hit the wall behind him while screaming out obsenities, which often leads to him eventually hiding under the table before he is sent to his room to regain composure...which yes, creates even more disruption before he finally finds some peace.

Mornings begin with screams in our house. I wake him gently, but as the time on the clock ticks away and he refuses to present himself, to get dressed, to brush his teeth (the absolute most difficult chore in our home), or take his pills, my patience starts sliding. I start counting, which always has the success of arousing him from his bed, but then angrily. There is rarely a morning when I am not cussed out and called nasty names as I prepare breakfast, lunch, and get everything ready for the day. It seems almost normal in our home, except for the days when it also involves over-stressed parents who are not willing to put up with it for another second...those are the days I truly dread. And when Kaeden is finally sitting at the table after having had his shower, which was also a fight due to the sheer amount of time he stands under the hot steam wasting water without ever really washing (he finally accepts this as part of his morning ritual), he starts in on teasing his brother. Often it's something simple like moving the cereal boxes so Jari can't see them, or sticking his fingers in Jari's cereal (which elicits screams from Jari, who will then refuse to eat it), other times he just stares him down or makes snide little comments ...typical brother teasing, but to a higher degree. Most days, Jari eats in the living room watching cartoons until Kaeden has met his morning goals and is out the door headed for the bus. This is not ideal, but sometimes the only form of creating sanity for my little guy.

No matter how much time Kaeden has to get ready, it is never enough. He wastes his time like noone I have ever met. We have used pictos to help him complete his chores, but because he also suffers ADHD, this is something that works for only a short period of days before he bores of it. We try to get him to take his pills immediately first thing in the morning- it takes 30 minutes for them to be in his system and working for him to concentrate enough to even begin the process of thinking about what needs to be done. He flutters about, his eyes darting from place to place as he wiggles his way back and forth getting into everything within his sight. If there are papers on the table, he must look at those. If there is a ball on the floor, he must kick it around. If there is anything in his way that has the opportunity to distract him, it will. And don't you dare get in his way, or you will be cursed for having come into his contact, often also hit. And if it happens that he spills a glass of milk, you will be immediately blamed, for nothing is an accident, nor his fault. Everything that happens is someone elses fault.

And then there are the dirty diapers. His biggest task is to deposit his dirty diapers appropriately in the trash outside. Getting him to do this is hard. He knows he has to, but he fights it with every ounce of his being. And yes, he stinks, he is covered from head to foot in pee, and he aslo thinks it's great fun to tease you with touching you with his pee-covered body. We have tried various brands, forms, etc of diapers, but nothing contains the sheer volume of urine he manages to create each night. Are you wondering about my laundry tasks? Yes, it is huge. Blankets, sheets, pyjamas, extra pants and undies...every day. It is daunting.

So, that's the first hour of our every day with autism and ADHD. Sound like fun? You're right, it isn't. But, I am not writing this to make my child out as the bad guy. It's simple...the majority of all the above issues are out of his control. He doesn't wake up hoping to create an upheavel. He doesn't wake up wanting to start his day off with a fight. He doesn't wake up scheming ways he can make mama mad. He has autism. He is lost in a world inside his own head which differs from the world most of us accept. He fights because it is his only manner of having control. This is autism, folks, this is it. And that is why it is scary to me. That is why I worry about the future of our world. For this just one hour in our life, one hour of each day that he lives with autism, that we all live with autism.

And you know what happens last within that hour? Every morning, come rain or shine, smiling or crying, I send my son out the door with a kiss, a hug, and the sincere words of "I love you. Have a good day." Because that kiss, that hug, those sentiments are what keeps me sane, brings me the reality of why I wake up each morning, and the hope that he knows, autistic or not, just how deep my love for him is. Autism Awareness. This, folks, is what it's all about.


Jen said...

I have no idea how I'd deal with this situation. I can barely handle my two "normal" children. I give you kudos.

My sister is 19, by the way. We're all blessed in my family to look extremely young. :)

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Claudia said...

You are an amazing woman. I don't know HOW you do it. I'm certain that God gives us only that which we can handle, and to each he gives something different, something that will help us in the long run, even if we can't see or understand it in the now. You are brave, and strong, and loving. Your heart is larger than the moon.

Anonymous said...

I don't have to wake up every morning in a home with an autistic child, instead I get to wake up every morning wishing my autistic little boy were here to give me a another lesson about the true meaning of LOVE. When he was in America with me last summer I for the first time in my 57 years of life learned what real love was all about, and it was Kaeden who taught me. True love means communicating with "deaf and dumb" parents via hand gestures and lip reading the needs and wants of their baby. It is sitting out on the sidewalk with a homeless man and discussing his plans for the day because you really do care. It is finding a bowl to put water in for a travelers puppy. It is giving treats to children whos mommy said she couldn't afford it, and giving a lady "Hells angel" on the back of a Harley a break from the wind in her face. In general it is bringing a smile to a face that is otherwise distraught from fear, thirst, hunger or pain.It is taking a gift from God and giving it to another because they are special and so are you. This is what living with my autistic Kaeden is all about!!!!And while his mommy holds his heart the closest, his daddy yearns for a little more patience, and his brother strives for normalacy, they are all enriched beyond what we'll ever know because Kaeden is in their lives every minute of everyday. No I don't live the daily "grind" but I know about it. My daughter shares everything with me, from the early morning episodes to the night time hugs and "tuckins". And we both thank God for the true meaning of the LOVE of Kaeden.

Alison said...

Oh Tera, this post was beautiful in its stark reality.

V-Grrrl said...

I'm at a loss for words. I'm glad you shared this.