When the Body Outlives the Mind

I’m comfortable with the fact that one day I will die. I’m not comfortable with the idea of becoming old and infirm, a distinction driven home to me these past two weeks. I am in my thirties, and all of my grandparents are alive. My maternal grandmother, Margaret, has not been doing well for awhile, and after these past two weeks her decline has been accelerating, leaving us all feeling that the end for her is near.

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Why is Acceptance Lacking With Autistic Children?

My whole philosophy with Buddy has been based on acceptance. If he grows up and goes to college and lives on his own, great, and if he always need to live with us, great. We’ll take it as it comes. Yet with autism, unlike other disabilities, there seems to be this race among parents to make sure their child progresses as much as possible and becomes as neurotypical as possible.

Considering I have a background in working with children with special needs, there’s an acceptance among parents of children with Down Syndrome or ADHD for instance that you don’t see with autism, and I think it’s because an autistic child can either grow up to be the next Albert Einstein or could never progress much and require constant care. I think this will resolve in time with genetic testing and when we can get a good idea of how much progress the child is capable of making early in life. But for now, when people get the diagnosis, we don’t know how they will grow up.

Meanwhile, the parents of Child B see the parents of Child A gloating about their miracle/perfect formula for “curing” autism and feel the blame when Child B does not progress much  and blast autism as the worst thing that can happen, while autistic adults look at how Child B’s parents are making autism to be this big boogeyman and recoil, especially since, when parents of autistic children murder them, it’s given a free pass and seen as a justified reason to kill your child.

I think the fact that some children make gains at the age of five, others at 7, others at 13 while still other children never make those amazing gains leads to this belief at the beginning of the diagnosis that if you find the right combo of snake oil and therapy you can “cure” your child, and you don’t get that with Down Syndrome, where the limits are well known from the outset. So with autism, parents never get to an acceptance stage, which can cause resentment if the child does not progress as the parent believes they should, which gets taken out on the child, who bears the brunt of those feelings.

With autism it has to start with accepting that even if your child gets to a point where they can seem neurotypical they will still be autistic. It means trying to see the world from your child’s eyes. It means not spending all of your time trying to change your child. And for goodness sake’s, if your child wants to stim let them stim. I don’t know why some parents get so hung up on that.

Accepting your child does not mean accepting bad behavior. I want to be clear on that. Here’s the thing, while Buddy had bad behavior when he was younger, now at 6, he rarely acts out. I painstaking taught him how to control manage his strong emotions, and now he regulates himself so well that his case manager said that his self control is amazing for a typically developing child, much less an autistic one.

It meant being there when he was tantruming, saying it’s okay to be mad, it’s not okay to throw things or bite, find a different way to say you are mad, and modeling anger management techniques such as blowing bubbles with him. At times I wondered if I was wasting my breath and if he understood me, but he did. Not he asks to go to his room or to go to the potty at school until he calms down. Autistic children can learn to manage their emotions.

Accepting a person is that distinction between behavior and person. It is, “it is okay to feel this way” or “it is okay to be different” and “this behavior you are doing needs to change.” It’s okay to ask for the latter, though I do my best to limit it to when he is going to hurt himself or others. But when you focus on curing autism, you reject your child. And think of a time when you felt rejected. How did you react?

 

Sometimes You Have to Hit Rock Bottom

Something interesting is going on in my small town. Mainly, the school board race is a big deal. Usually I pay attention because of the local Tea Party nuts who keep trying to get on, and I vote to keep them off, not because I’m excited about their opponent. The opponent typically has no background in education and is the incumbent and fine with the status quo, which I’m not. This year is different. For one thing, teachers and people with a background and education in child development and teaching are running. I’ve emailed them asking what will they do for autistic children, and their responses were exciting and included things that need to be implemented in schools. In short, for the first time I’m having to make a decision between two candidates I am excited about.

The state of education in Texas has been abysmal, and I think that Betsy DeVos was the straw that broke the camel’s back for a lot of people. I even thought of running for school board, but I’m horrible at popularity contests and instead am looking at unelected positions. It’s strange, because I was extremely vocal in protest about what little public schools offered my son, however, with that under attack, it’s sparked a resolve to do more to push back against it and improve schools.

Whether this will translate to momentum at the ballot box remains to be seen, and people are horrible at voting in these small election. But they matter!

I’m hoping that one of the people I am excited about can get on the board and make some needed changes and lead the fight against DeVos. Failing that, I’m just glad there’s some qualified competition for once.

Getting Back on the Horse

I’ve not been able to write here since Betsy DeVos was made the Secretary of Education. While I called my senators daily asking them not to confirm her, given I am represented by Ted Cruz and John Cornyn, they did, and proudly. Now my son is at risk of having less rights than I did growing up. And it just seemed to emphasize the fruitlessness of making any noise until election time. My representatives don’t give a damn about me and ignore me.

And it just emphasized how voiceless I fell right now. Is anyone listening? Does anyone care? Writing about it just felt pointless, another frustration, another way to be ignored and told my thoughts and opinions and things that affect the quality of life for my children and myself do not matter.

Meanwhile, life does continues.

Local elections are coming up. Small beans. But it has to start locally. Currently researching school board candidates and wondering if public schools will ever be accepting places I can feel comfortable sending my son or not. Yet this is where we are. And what is happening is not right.

So I have to get back on the horse and start writing again. I may not be heard, but at least I spoke out.

Are We Asking Too Much of Ourselves?

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Yesterday morning the local UU hosted a discussion on how to reach out to people warped by intolerance and help them to become tolerant. It is a vital discussion, especially given the current climate, but the whole time I was there I felt a critical component was missing. While the information was good and vital, such as don’t mock people’s beliefs, try to find the common ground, etc, several people talked about how they just couldn’t have these conversations without them deteriorating. As I was driving home it hit me. It’s easy to talk about calmly having these discussions with people who hold intolerant viewpoints in a safe setting filled with people who agree with you. It’s another thing to hold them when you hear someone spout hatred, especially if you are, like I am in the southern US, surrounded by people who hold these views.

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The Consequences of Ignoring Science

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While no one in my family is a scientist, I grew up in a science literate family. My parents subscribed to Scientific American and Discover and several other periodicals. Our home library was filled with books written by Richard Dawkins, Carl Sagan, Stephen Jay Gould, and Stephen Hawking and others. We even attended university lectures with Dr. Gould and Dr. Hawking.

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Lessons From Anne Frank

How many of you read Anne Frank growing up? How many of you cried? How many of you wondered how such atrocities could be allowed to happen? How many of you wondered how so many people could turn their backs on the suffering of others?

Well, if you are against helping the refugees, look in the mirror, and all of those questions will be answered. And Anne Frank’s death becomes meaningless.

Did you know that Otto Frank, Anne’s father, tried desperately to get his family somewhere out of reach of the Nazis, and that included trying to reach America? But because Americans were suspicious of Jewish people and increasingly hostile to foreigners, they were denied entry.

No Asylum, now available on Amazon Prime, is a documentary that tells the story of Mr. Frank’s vain efforts to escape with his family to the US. The most horrifying part of this is that originally the Nazis did not want to kill Jewish people. They wanted them out of their lands. But when other countries that weren’t under Nazi control refused to take them in, then they started to execute Jewish people en mass. This has chilling implications for our time.

I don’t believe everything happens for a reason, but I do believe that we can look back on tragedies and honor the people who suffered them by learning from what happened and standing firm while proclaiming, “never again!”

Fortunately, as evidenced by the protests, I believe a lot of people took the lessons of the Holocaust to heart and found meaning in something horrible. This is why Otto Frank spent the last years of his life promoting Anne’s diary, and when we take action we honor his commitment and Anne Frank’s memory, as well as the memory of the 6 million other people, Jews, Roma, LGBT, the disabled, and others, who died. This is where we say never again.

I will be Miep Gies. I will be Johannes Kleiman. I will be Victor Kugler. I will be Bep Voskuijl.