Tuesday, June 17, 2014
Wendy Chung: Autism — what we know (and what we don't know yet)
After watching this video I felt great hope and incredibly overwhelmed at the same time. While I am encouraged that they are researching the cause of Autism, that doesn't help our children now. We must somehow teach our children to navigate this world that is unprepared and uneducated about them. I feel the weight of every decision I make keenly.
Have I talked to their teachers enough?
Does his IEP have the right services?
Is he in the right school?
Does he have the support he needs?
These are just the questions for NOW. What happens when they are a teenager? An Adult?
Is High school going to be too stressful?
Will he have friends?
Will he be able to go to College if he wants?
Will he find someone to love?
Can he live on his own?
Will he feel satisfied in his life?
One could say these are questions that every good parent asks themselves about their child. Do they feel the anxiety we do when they think about these questions? Maybe. Could a parent of a child without Autism actually understand and be a fountain of knowledge and support for us?
Our need to communicate can not just stop with those that innately understand what we are going through with our ASD loved one. Just like this TED TALK said we need to form a community.We need to reach out to not just those who already understand but those that have a completely different world experience. I think we will find answers and solutions with that type of combined effort.
Monday, June 16, 2014
It takes a Village.....
Today I had a hard conversation with my youngest child Mike about his future. A little background on Mike, he was diagnosed at 3 with PDD-NOS. He was in an Autism preschool for three years and then started inclusion in Kindergarten. We just finished 1st grade this year. In Kindergarten we noticed that he did not struggle with certain skills that are typical of a child with Autism. While he struggled with attention, hyperactivity, impulsiveness and executive functioning he had strong social skills and his communication was fairly good. It was decided that he was not on the spectrum and the diagnosis was switched to ADHD.
We thought this was a step in the right direction.
Almost two years later and my husband and I are looking at each other with looks of desperation. Mike has what one would jokingly call a strong personality. We thought much of his defiance and stubbornness came from being a second child to an autistic brother. Now we have dealt with a year of misbehavior, meltdowns, screaming and fighting and we are starting to have to reevaluate. Mike is smart, and yes I know all parents think their child is smart. He tests above grade level and his teachers look at his scores on tests and then look at his class work and behavior and scratch their heads. When frustrated he lashes out inappropriately either physically or verbally. I get phone calls once a week usually, lately from the assistant principal. Everyone is weighing in with what they think the problem is.
But here is the thing, I can take him in to get MORE testing (which I am doing). I can work with him at home and his therapist can work with him weekly. We can control our environment at home and when I am with him elsewhere but what happens when he goes out into a world that does not understand or care why he misbehaves?
Mike got kicked out of a summer camp this week. He couldn't control himself and the camp has a zero tolerance for fighting or defiance of authority. Part of me is frustrated at myself for putting him in that situation but part of me is so mad at the camp. I made sure they knew what was going on with my child. Not once did they say they couldn't handle it. How are we supposed to provide opportunities for our children and adults to learn how to function in society when we have absolutely no support from our community? This camp had the opportunity to work with my son to make the camp a success. Would it have taken a little more work and effort on their part? Absolutely. But instead, they told us he wasn't ready for the camp and that he could try to come back next year. Does my child misbehave? YES. Can he be very difficult to work with? Double YES. If he never has the chance to learn in a setting outside his own parents and home, will he ever be able to develop the skills needed to figure these things out on his own? Not likely.
I'm not sure how but I have got to find a way to communicate with the schools and community at large about my child. Because it isn't just my child. I am not the only one with these issues and in order to ensure a safe environment for our children we need educators and community leaders to step up and work with us. Maybe then I won't have to be so scared when I have conversations with my child about his future. I will know that it is not just his family helping him figure this out but a whole community working to strengthen and nurture him. Wouldn't it be nice if the adage "It takes a village" actually meant our communities?
What have you done in your communities to raise awareness for your child's needs?
We thought this was a step in the right direction.
Almost two years later and my husband and I are looking at each other with looks of desperation. Mike has what one would jokingly call a strong personality. We thought much of his defiance and stubbornness came from being a second child to an autistic brother. Now we have dealt with a year of misbehavior, meltdowns, screaming and fighting and we are starting to have to reevaluate. Mike is smart, and yes I know all parents think their child is smart. He tests above grade level and his teachers look at his scores on tests and then look at his class work and behavior and scratch their heads. When frustrated he lashes out inappropriately either physically or verbally. I get phone calls once a week usually, lately from the assistant principal. Everyone is weighing in with what they think the problem is.
But here is the thing, I can take him in to get MORE testing (which I am doing). I can work with him at home and his therapist can work with him weekly. We can control our environment at home and when I am with him elsewhere but what happens when he goes out into a world that does not understand or care why he misbehaves?
Mike got kicked out of a summer camp this week. He couldn't control himself and the camp has a zero tolerance for fighting or defiance of authority. Part of me is frustrated at myself for putting him in that situation but part of me is so mad at the camp. I made sure they knew what was going on with my child. Not once did they say they couldn't handle it. How are we supposed to provide opportunities for our children and adults to learn how to function in society when we have absolutely no support from our community? This camp had the opportunity to work with my son to make the camp a success. Would it have taken a little more work and effort on their part? Absolutely. But instead, they told us he wasn't ready for the camp and that he could try to come back next year. Does my child misbehave? YES. Can he be very difficult to work with? Double YES. If he never has the chance to learn in a setting outside his own parents and home, will he ever be able to develop the skills needed to figure these things out on his own? Not likely.
I'm not sure how but I have got to find a way to communicate with the schools and community at large about my child. Because it isn't just my child. I am not the only one with these issues and in order to ensure a safe environment for our children we need educators and community leaders to step up and work with us. Maybe then I won't have to be so scared when I have conversations with my child about his future. I will know that it is not just his family helping him figure this out but a whole community working to strengthen and nurture him. Wouldn't it be nice if the adage "It takes a village" actually meant our communities?
What have you done in your communities to raise awareness for your child's needs?
Wednesday, June 11, 2014
In the Trenches
Today I went to the playground with Ike and Mike, where we met some school friends from Mike's PDD classroom. These two kids love Mike and Mike loves them. I have come to know their mothers very well as we have hashed out our battles with our children.
We have different backgrounds, different lives, we are different ages. But we feel like soldiers fighting a war that we are unsure of the outcome. It is amazing the bond that is formed when you find people who are bleeding through the same experiences as you. The euphoria of someone UNDERSTANDING the feelings and desires you have. I guess this is why people with cancer tend to cling to one another. There is a level of strength when people come together in their struggles.
I can complain about trying to teach my children spontaneity while still keeping a structured routine so they can function. I can bemoan the tantrums, the tears, the heartache and they get it. I don't have to explain how huge the little victories are, they know.
While our children may not die from having Autism it is still a battle we fight. And while there is no cure, there is the hope that our children will be able to live a life full of love, laughter and acceptance. That is why we fight and why we will keep on fighting. It sure is nice to know it's not an army of one.
We have different backgrounds, different lives, we are different ages. But we feel like soldiers fighting a war that we are unsure of the outcome. It is amazing the bond that is formed when you find people who are bleeding through the same experiences as you. The euphoria of someone UNDERSTANDING the feelings and desires you have. I guess this is why people with cancer tend to cling to one another. There is a level of strength when people come together in their struggles.
I can complain about trying to teach my children spontaneity while still keeping a structured routine so they can function. I can bemoan the tantrums, the tears, the heartache and they get it. I don't have to explain how huge the little victories are, they know.
While our children may not die from having Autism it is still a battle we fight. And while there is no cure, there is the hope that our children will be able to live a life full of love, laughter and acceptance. That is why we fight and why we will keep on fighting. It sure is nice to know it's not an army of one.
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