Wednesday, June 25, 2014

They were a very quiet pair... seemed so normal to me

Two small children sit
silently engrossed in play
Sensory refuge 

Ode to Mr. Rodgers

I have very fond memories of watching Mr. Rogers when I was young. The Crayon Factory episode made such an impact that I excitedly showed it to my children on the computer 20 years later. I not only watched Mr. Rogers but we had a cassette tape of many of the songs he sang on the show. "I like to take my time", "Man that Manufactures" and "Beautiful day in the Neighborhood" to name a few. Little did I know when I was a child that Mr. Rogers was teaching me social skills while we were living in the land of make believe. I learned that I needed to use my words when I was frustrated instead of hitting. I learned that it was important to be kind, to be obedient to my parents, to ask questions when I didn't understand. Looking back with adult eyes the one thing that Mr. Rogers taught me that I have needed the most as a parent is "Go back to the basics."

Last week I reached my breaking point with my boys. I snapped. The fighting, whining, disrespect, defiance, I'd had enough. We came home from scouts and I sent them to their beds and went on a walk. I have been reading The Explosive Child and The Defiant Child, trying to figure out what to do with my children.  On my walk, a part from both of the books finally clicked into place for me. I was so fixed on what my children were doing or not doing I wasn't looking at my behavior. Talk about blow to the ego. Was my behavior as a parent helping to create or perpetuate the problems we were having? You probably can guess the answer, it was.

I came home from the walk with my dog calmer but more determined. I went into their rooms and started taking toys, books, video games, anything I could find that they liked. I looked each of my children in the eyes and said, "These are mine. I paid for them and you don't deserve to use them with your behavior as it is". It didn't go over well, but I stood firm. I had realized that I had enabled the bad behavior by making excuses for them. "Well they just don't know better, they have ADHD/ Autism". What I realized was by doing this I was allowing their bad behavior by not setting basic boundaries and expecting them to comply. I have been so used to dealing with their inability to do certain things that I had used my children's diagnosis es to excuse behavior that they actually could control.

So I went back to the basics with Mr. Rogers. With the song "I like to take my time" in my mind I have spent the past week deprogramming and reprogramming my children. It has been so far an overall success. I have had to put extra effort and time in this week. I have had to be mean mom and watch my children cry as they are figuring out boundaries and expectations again. I have had to admit my role in my children's behavior, which was no small pill to swallow. But as I see the small success I see the truth of it. The basics are the basics for a reason. They work.

So thank you Mr. Rogers. When you taught me the basics you also made it possible for my children to learn them as well, even though to my sorrow, your show was too slow to catch their attention when they were young.

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?

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.