August 19, 2014

Jelly Goes to Kindergarten

Alef: the first letter of
the Hebrew alphabet
 Yesterday was Jelly's first day of kindergarten. It was all the things I suppose the first day of kindergarten should be like. So much excitement at seeing some familiar faces, the chaos of figuring out where to line up, learning teachers' names and scoping out the new kids. I managed not to cry. My baby girl, in kindergarten. She said she wasn't nervous.

Today, the second day of kindergarten, was a little harder. No parents to accompany her to the classroom meant an extra long goodbye and a few tears I saw her fighting hard to keep in.

Jelly hasn't shared much about the days. I found out through another boy that she cried when the teacher spelled her name wrong (the woes of having a name that can be spelled multiple ways.) She fell on the playground. She learned some Hebrew but she doesn't remember what it means. She had art and her friend had music.

But I know Jelly. She has to process first. She won't come home recounting her entire day though I have no doubt she remembers it. Little bits will come out here and there when she's ready to share them.

This morning, as I prepared her lunch she told me about what was okay to bring for snack and what was okay for lunch. "You can't have too much food at my school," she told me. Later, "there are no mistakes in art, right, Mommy?"

She is the smallest one in her class, which means she is the smallest one in the school. That seemed to bother Jelly a little bit today. She can't climb as high as the other kids. As part of the under five feet crowd, all I could think was "get used to it, kid." I hope her big personality will make up for it.

She had an interesting observation about Hebrew, which is part of her school's curriculum. She had taken some Spanish classes in preschool so I asked her why she thought she could remember the Spanish words but not the Hebrew. "Because at Spanish they gave me a paper with all the words on it In Hebrew, there's no paper." I explained that this was probably because Hebrew words use a different alphabet, one that she doesn't know how to read yet.

This was an astute statement on her part. Jelly is a visual learner. This surprised me since her language skills, from vocabulary to reading and writing, are so strong. But Jelly learns to read even complicated words essentially as sight words. Even now, she still doesn't quite get the "sound it out" concept. So, by not being able to see the Hebrew words, she has a harder time remembering them.

Or maybe she's just not ready to tell me.

August 6, 2014

What Could Have Been

I watch Jelly playing with some nine year old boys at the beach. These aren't just any nine year old boys, these are my best friend's twins. They've known Jelly since birth. My friend and I talk about how remarkable it is that kids of very different ages can play together so well, especially at the beach. There's just something about digging in the sand.

It was a lovely family outing. Except it wasn't really a family outing, not for my family anyway. Jeff and Moe weren't there. Of course they could have come, they were more than welcome. One of the boys even commented that the was sad Moe couldn't come, because he knows how much he likes the beach. They're good kids.

These friends stay at the beach for a week or so every year. The first year we visited them there, Moe spent the entire time running straight into the ocean. It was a little scary but Moe loved it and was still pretty small. The second year was a little better. Two years ago, he just ran and ran and ran on the sand and when he wasn't running in the sand he was eating it and it wasn't much fun for anyone. Last year, we canceled at the last minute because Moe was going through a really rough patch.

So this year, we decided I would just bring Jelly. Jeff would take Moe to the pool so they would have something fun to do as well. Jelly and I had a great day. It was relaxing and fun and everything a day at the beach with kids should be. 

But a story was playing in the back of my mind. The same story I tell myself over and over again. 

Jelly deserves a big brother she can play with.
Why can't we take a family vacation to the beach?
This is how how life is supposed to look.

And then I feel guilty for not just enjoying the moment. For not believing my family is good enough as is. For resenting autism and focusing on all of the things we can't do.

I've been reading a book, "The Reality Slap: Finding Peace and Fulfillment When Life Hurts," based on Acceptance and Commitment Therapy (ACT). This type of therapy is different than Cognitive Behavioral Therapy in that "rather than trying to teach people to better control their thoughts, feelings, sensations, memories and other private events, ACT teaches them to 'just notice,' accept, and embrace their private events, especially previously unwanted ones." (Wikipedia)

ACT teaches that these "what if things were different?" scenarios are just stories we tell ourselves. I don't have to fight them, but neither do I have to give them any weight, especially when they aren't helpful. It's been a good strategy for me.

But it isn't easy. 

It's one thing to tell stories of what might have been in the abstract. I compare our most difficult times with others' perfect social media stories, or some notion of how things could have been. But during my day at the beach, I was experiencing that life. It wasn't entirely easy or perfect, but it was was infinitely closer to the family life I had imagine. The one I ache for.

Thankfully, the other thing ACT teaches is to treat ourselves with kindness and compassion. To recognize these feelings of loss and grief just as a friend would. So this week I'm working on that. On understanding that dealing with a life more challenging that I had expected is hard and that I am a work in progress. I am imperfect, but I am learning.

August 1, 2014

Positivity and Authenticity: A Blogger's Dilemma

As a writer, blogger, and participant in social media, I make choices everyday about how much to share of my family's lives. This responsibility takes on even greater meaning as I share the story of someone who is unable to participate in the sharing of his own story.

I do not take this responsibility lightly, but as someone recently called me, I am a staunch "defender of authenticity." I like to tell my truth on this blog, even though it doesn't always paint the prettiest picture of our lives.

Why do I do this? Well, for one thing it helps me. Blogging is, as they say, "cheaper than therapy"(though I pay for that too). Writing helps me process my feelings, and writing about even the hardest times lightens my soul and puts things in perspective. This also gives Jeff a break, since I can cry on my blog's shoulder once in a while instead of his.

Of course, I don't have to blog publicly to write my feelings, and I do keep a journal for more private thoughts (and a lot more swearing). But blogging also brings with it support. I get support from my community and I hope that I provide support for others.

On the other hand, I do believe I have the responsibility to correct some of the misconceptions about autism. Mainstream media outlets are quick to speculate, for example, about the autism diagnoses of the perpetrators of school shootings and this, among other stereotypes, is immensely harmful to the autistic community.

Media also love to share stories about remarkable individuals who "overcome" their diagnoses, or do amazing things despite their challenges. This is a more positive spin, certainly, but one that can be harmful in a different way. For one thing, these tales give a lot of false hope to parents like me, whose children may never have such accomplishments. For another, it sets the wrong expectation for the future needs of our children. Authenticity means being able to share a story of a severely disabled child who will grow to be a severely disabled man—a man who will require lifelong services, support, and resources.

Some bloggers just want to write happy blogs and there's nothing wrong with that. As for free therapy, research shows that people who express gratitude are in fact happier. According to Emmons & McCullough "in an experimental comparison, those who kept gratitude journals on a weekly basis exercised more regularly, reported fewer physical symptoms, felt better about their lives as a whole, and were more optimistic about the upcoming week compared to those who recorded hassles or neutral life events."

Others express the concern that their kids will one day read their blogs, and could be hurt to learn that their parents thought they were difficult. This is a real concern. But the truth is that in all likelihood Moe will never read this blog, although reading is a skill I long for him to have above almost any other. In case he ever is able to read and comprehend this blog, and because Moe is a person deserving of respect regardless of his abilities, I strive to always write first from a place of love.

Positivity and authenticity do not have to be in conflict. We have good times too, and I aim to share these more regularly. But I will continue to share the challenges as well. This parenting gig is tough, made even tougher with the uncertainties and struggles of autism in our lives. If there is anything I want other parents to know, it is that they are not alone. I never want someone to come here and think that if they are not all sunshine and roses, they are doing something wrong.


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