Tuesday, September 23, 2014

Learning Never Stops

I wish I knew when it came about that only children need services, or only children need specialists such as behavior analysts or only children need the developmental specialist doctors. When did the focus become only about the first ten years of a child with autism's life, or if you are lucky, into early adolescence. Then BAM, once 16 hits, 17 and then the dreaded 18...POOF, it's gone. The resources your child could access as a younger version of themselves was plentiful. Individuals wanting to help your child were everywhere (well, depending on where you live). Behavior therapists were in and out of your home for years during those coveted years. They are rarely found once the teens hit.

Typical teenagers are in high school and then to further their learning, they go into college or specialty schools or even job training - the list is endless. Adults are always trying to teach themselves new things- whether you want to learn to cook better, ride a motorcycle, learn a foreign language for the first time. The possibilities are endless.

So tell me why...why when our children with autism reach adulthood that most services cease. Most learning programs are either hard to come by or don't exist at all. The number of behavior analysts that see adults with autism are VERY few and typically only in residential, group homes or crisis situations. I want to know why. Our children are in adulthood far longer than they are in childhood. Their learning doesn't cease because they reach a magically age, just like your learning never stops throughout your lifetime Just because Kreed didn't learn to brush his teeth or shower or put on his shoes as a young child, doesn't mean he can't learning it now. He makes weekly gains as we work on it. Kreed had zero communication for most of his life until he was 14 years old. Then he used a device for the first time and was able to ask for a few things. By the time he was 16 even more technology came out and he began to have small conversations with those closest to him. Who knows what he will be saying when he's in his 20's...30's or beyond. His learning doesn't stop.
The view nowadays seems to be to just hold and survive when our kids hit 18 years old. That we are stuck with whatever level our child is at right at that moment. I'm here to tell you it's not true and it's time for us to fight a new fight- that our children are lifelong learners and services shouldn't end just because they are becoming adults. We shouldn't have to hold and survive. We shouldn't have to scour the internet for service providers or doctors and only be told nope sorry, only for children. Why? Someone tell me why?

Why aren't there inclusive communities that don't cost thousands of dollars to attend? Why aren't there behavior analysts willing to work daily with our kids to continue their learning. I don't care if a child didn't learn to read during their childhood, keep trying. Their brains haven't stopped processing information. These children don't become brain dead overnight on their 18th birthday. Learning is lifelong. Period.
As Kreed nears his 18th birthday my only view is this: I can't wait to teach him even more things. While Kreed is incredibly affected by autism and his various medical disorders and will most likely live with us for the rest of his life, that doesn't mean its a life sentence for him or for us. It just means we will be the ones to continue to teach him and expect more for him and give him a life filled with love and happiness.

While some may say "but Kreed is an easy child, look at what he's learning, my child can't do that," I will promptly direct you to the rage videos we have posted on youtube. Kreed was never an easy child. Ever. He was hard. He caused chaos and destruction and everyone who encountered him labeled him as unteachable and that he would never communicate or learn anything of substance. We chose to reject that view and worked countless hours and stayed incredibly consistent with him and gave him a communication device where we then spent many more thousands of hours teaching it to him. He was HARD. He still can be if he's in the mood. But I always knew when he was about 12/13 that if we didn't work our butt's off to get some of those behaviors under control and give him communication, then we would be the family holding on and surviving. So we pushed and we gave up a lot to get him where he is today and continue to. Because it's OUR future. It's not just HIS future, but it's ours as caregivers as well. We are fully aware of the lack of services and that the responsibility for his care falls squarely on our shoulders. So we took it and we teach him. Some days more than others. Some days are complete failures. Others are complete successes. But on our failure days we always know there are new days to come and get back on our feet.
So as Kreed approaches adulthood and I look around and wonder where are the resources are...I realize there is a new fight and a new kind of awareness that needs to happen. Our adult children with autism are lifelong learners, just as you and I are. We need the resources that they had as a child- they can still learn communication, they can still learn self help skills, they can still learn to read, write, do math. They have probably MORE behavioral issues than the younger children, so we need the behavior services so it's not on us already exhausted parents. 
I have always told Kreed: I will never stop fighting for you. 
That includes into adulthood.

Sunday, September 7, 2014

I am not a perfect parent

I am not a perfect parent. 

Sometimes I'm tired. Sometimes I'm hurt. Sometimes I'm so mentally exhausted I can't think straight. Sometimes I'm stressed beyond belief. Sometimes I do not do things right for Kreed or I yell too much or don't take the time to understand. 
I am not a perfect parent. 

The trick is knowing that no one else is either. We try and we do our best for Kreed at each point in time- but sometimes our best is not super awesome- sometimes our best is sheer exhaustion. 

Kreed sometimes has days where he rages all day. Or pees in every part of the house. Or spills food everywhere. Or yells at me all day. Or hits me. He is not a perfect kid either. But we love him unconditionally and to the moon and back. Turns out Kreed also loves us unconditionally and forgives us when we have just as shitty days. These dimples sure help. 
We would like to think we can be there 100% for our kids every second of every day and be perfect therapists also. Sometimes we are just tired parents. Who wouldn't be after waking up every two hours at night to put them back to bed or clean up whatever mess they left us while we shut our eyes for JUST A SECOND. 

When those eyes are open some days are filled with that pee, or poop, or hitting or yelling. That's they way it goes. Like I said, our kids aren't perfect either. Some days the world is too much and it's so much easier to hit and yell and not use a toilet. I get it, I do. Some days Kreed just wants Five Guys for every meal and doesn't understand that's not okay. He's hungry and he wants their fries damn it. So we fight and yell and have it out. Then he apologies, I apologize and life goes on. 

Sometimes life feels like a repeat every single day- sometimes nothing changes and it's a struggle to get through. Other days are amazing. Some days are both. I'm not a perfect parent and he's not a perfect kid. So that how that goes. 
But as long as we keep in mind progress not perfection, I think we will be alright. Last year we were at the end of eight months of pure hell- he raged like crazy and hurt himself and me badly day after day to the point he could no longer ride in a car or be out in public. He was restrained constantly to keep him from destroying his body or the house or me. It was utter hell. I think I went to a part of myself and my brain that kept the full weight of those eight months far far from my consciousness. Now I can barely recall it and I guess don't want to. Now it's a year later and there is much to celebrate! Including knowing none of us is perfect and we do what we can with what we have!

To this...
This is not always an easy life. Some days will be better than others. Sometimes the bad days stack up and you don't even hardly remember what a good day looks like. But it will come- it will be a smile, a nod, a moment of wonderful...something...and the world will be okay for that time- 5 8seconds....5 minutes.....5 hours. That is what we hold on to. 

And remember it's ok. We are not perfect. We try our hardest at whatever point we are at and we love, love, love...and often that is what saves us all.