No Going Back

It's been four days since we pulled Jack out of school. Right now we're in the decompression stage. We're realizing how much stress he's been under in his school environment. Nothing against the school. It's a very good school, and we always felt lucky to be a part of that community. We made some really good friends there and had some fun times together. But we've realized that because of his disability, a lot of Jack's energy has been spent just coping with the environment of school. For a child with ADHD and sensory issues in addition to his autism, it's really hard to hold yourself together in such a structured environment for seven hours a day. For him, it was just too much pressure.

When I was in school, even though I was a good student, it wasn't my favorite place to be. But I tolerated it for the privilege of spending all day in the company of my peers. I was always ready for vacation, but at the end of a long break I would always look forward to seeing my friends again. Jack is a very different kid. Even at the end of summer vacation, after having had nearly three months off, he never wanted to go back to school. 

"Don't you want to see your friends?" I'd ask.

"No. I can see my friends without going to school. School is like being in prison. I hate school."

I don't think we realized how really bad it was for him. Every morning getting him ready for school was so stressful for all of us. He'd tell me how much he hated going to school and how awful it was. I don't blame his teacher or the school. I'm sure there are lots of kids there who are perfectly happy. Just not mine.

Now that we've finally made the decision to keep him home, I don't know why we didn't do this a long time ago. He's so much calmer now. He's not stressed. I'm not stressed by having to fight with him about going to school. We don't have to stress about homework. Learning can be an adventure again and not a chore.

His teacher invited him to come back to school to enjoy one last recess with his friends and to say goodbye. He doesn't want to go, which makes me sad. Just the idea of going back to school--even for a visit--is anathema for him. No class reunions in Jack's future. What's done is done. There's no looking back.

We're looking forward, though, to adventures in homeschooling. There's a whole new world in front of us.

Freedom Academy

We finally did it. After talking about it for months and months--or has it been years?--we finally pulled Jack out of school this week. We're taking the plunge into homeschool. We're not mad at anybody. There was no particular incident that decided us. But after years of hearing your child say he hates school and it's torture for him, when he lies on the floor every morning and cries, "I don't want to go to school. I hate it there. Please don't make me go," it's time to pull the plug. He was in a very good school. It just wasn't the right place for him.

We were hoping he'd be able to finish the school year with his friends. He's been with mostly the same group of friends since kindergarten, some since preschool. We were hoping to see him graduate with his buddies, but it's just not to be. We all feel like we've been beating our heads against a brick wall for years now. It feels so good to finally stop!

Our hope is to establish a kind of free-range schooling style. Now that school is not a brick and mortar environment, learning is everywhere! Going to the store is a field trip! Watching a documentary about bugs is a science lesson. We had a conversation about World War II the other day in the car, and Jack expressed an interest in learning more. Now that he's not in school so much of his day, he's not so resistant to learning something in his "off" time.

The past couple of mornings Jack has been the first one up. No longer worried about having to get ready for school, he looks forward to just being at home. We'll probably put him into a more formal homeschooling program down the road, but for now we're all just decompressing. Taking some time to unwind and think about which way we want to go now that we're able to map our own educational journey.

I'm going to a support group for homeschooling moms tonight. I'm looking forward to meeting some other moms in our area, looking forward to building a new community. It's kind of a bittersweet process. We're all glad to be free, and yet we'll miss his friends from school. We still hope to see them, but it won't be the same now that they won't be together every day.

There's a sense of adventure in our house, though. Charlie was talking to Jack this morning and he said, "You know, Mom and I are a little nervous about this homeschooling thing. It's kind of scary."

"Don't worry," Jack said. "You'll figure it out. Pretty soon you'll be experts!"

Loved and Adored

The screensaver on my computer rotates randomly through the photos in my "Pictures" folders. Needless to say, many (most) of these pictures are of Jack. Many times I'll be passing by the laptop or sitting down to do something and be captivated by the photo on the screen. "Awwww, look how cute you were!"

This morning I caught a photo of Jack's first haircut. "Awwww, look how cute you were!"

"Yeah, yeah," groans Jack. "You always say that. Why do you have so many pictures of me when I was a baby?"

"Because you are loved and adored!" I told him.

Loved and adored. It's true. I waited a very long time for my baby. Motherhood was my heart's desire for many, many years before my prayers were finally answered. I was over the moon when I found out our baby was on the way. The morning he was born felt like Christmas in September. No baby was ever more loved, adored or wanted than was our Jack. I could be moved to tears just listening to him breath over the baby monitor. My little miracle boy!

I remember hearing a friend gush about her new baby, "It's like a new love. It's like that new boyfriend that you're just madly in love with and want to spend every minute of every day with. When you're away from him, you miss him and can't wait to get back to him. It's like that." When Jack was born, I knew exactly what she meant.

I used to stare at him in amazement as he slept or played on the floor, marveling that this beautiful little person was ours. I remember being so surprised that the love for your own child could be so different than the love you feel for other people's children: nieces and nephews, your friends' babies. Not that I loved any of them less, but the love I felt for this little person was so overwhelming! I would walk through fire for him. I can't be the only mommy feeling sorry for the other mommies at the playground because their kid wasn't as cute as mine, can I?

My point in telling you all this is not to say that I love my child more than anybody else. I know other parents are reading this who love their amazing children in exactly the same way. I'm so proud to be a part of that community. I just wanted to share this with you so you could nod your head and say, "I know, right?!"*

*Currently Jack's favorite expression. :-)

What If They Had a Science Fair and Nobody Came?

Shortly after the Christmas holidays, information started coming home from school about the annual Science Fair. The damn Science Fair! Words that clench my stomach and turn my dreams to nightmares. Other parents tell me their kids actually have fun doing their science project and look forward to it. They enjoy spending time thinking about what kind of project they'll do and planning their experiments. Not my kid. Unfortunately, Jack has zero interest in science, science projects and the annual Science Fair. He's not a science kid--aside from computer science--so getting him to do a project for the Science Fair is about as much fun as trying to give a cat a bath.

His school requires all 4th, 5th and 6th graders to participate in the Science Fair every spring. In 4th grade, he and Charlie investigated the freezing times of different substances (water, apple juice, root beer). The biggest revelation of that project was the discovery of root beer slushies. Yum!

Last year I tried to make it interesting by choosing a video game-related subject: "Do Boys and Girls Like the Same Video Games?" He still had very little interest in participating, so I pretty much did most of the work myself.

This year Charlie initially said he would do the science project, but after perusing the first few pages of the 34-page 6th Grade Science Fair Student Handbook for 2012, he decided enough was enough. What's the point of attempting to complete a project that's only going to stress out everybody in the family? What kind of lesson does that teach to anybody? If we as adults were overwhelmed by the whole thing, how does our child feel? We decided we just weren't gonna do it this year. Hell no, we won't go!

After going back and forth with the school, we've come to a compromise. The 504 agreement we set up in August determined that his homework is limited to 20-30 minutes a day maximum, due to his disability. For this reason, the majority of his science project will be done in class, supervised by his teacher (bless her heart!). She's modified the project to suit his interests. He's doing a study of the ergonomics of playing video games: whether you make better scores in different playing positions (sitting in a chair vs. lying on the floor).

Whew! What a relief! I feel like a weight has been lifted off the whole family. Am I alone in this? Surely there must be other parents out there who feel as we do that the whole Science Fair thing is out of control. It's just too much.

There Must Be Consequences!

Max Burkholder (Max Braverman on NBC's Parenthood)

I have such a love/hate relationship with the NBC show "Parenthood." On the one hand, I love that they have a character who has Aspergers, and little Max Burkholder, who plays Max Braverman, does a wonderful job portraying the behaviors typical of a child with high-functioning Autism. Someone very much like my Jack. That's why it upsets me so much when they handle storylines so poorly. Even though they go out of their way to write Aspergers into the show, sometimes they seem to forget that Max actually does have Autism. This week was one of those times.


At the start of the episode, the family is preparing for a weekend road trip, and Max is playing a video game. After his mom Kristina tells him several times to turn off the game and Max keeps saying he's almost done, Kristina marches over and snaps off both the television and the gaming system. Anyone who has a child on the spectrum can tell you what happens next. Of course, Max has a giant meltdown, which includes calling his mother a bitch. Hello! Did you forget your child has Autism? Did you expect any other response when you just figuratively slapped him across the face?


But does Max's mother take any ownership of her part in the meltdown and remember her child has Autism? No! She proclaims, "There must be consequences for his behavior!" Max is grounded for calling his mother a bad name and forbidden to go on the family trip. Kristina ends up staying home with him and his infant sister while everyone else goes to Grandma's.


I've been in that exact situation. I once grabbed a Nintendo DS out of Jack's hands because he didn't seem to be listening to me, and I'm here to tell you we both learned a hard lesson that day. The meltdown that ensued was extremely painful and emotional for both of us. He not only called me a bitch, but he told me he hated me and he'd never loved me. He was 9. By the time it was over, we were both crying and upset, but I realized that I was the one who provoked that meltdown. I was the one who threw the switch and sent his brain spiraling out of control.


Kids with Autism have low tolerance for frustration. They don't like transitions. In Max's mind (and Jack's) his mom just destroyed all the progress he'd made in the game he was hyperfocused on, just as effectively as a bomb blowing up in his face. It's too much sensory input and a meltdown ensues.


How can you punish someone for the way their brain works? Would you punish an epileptic for having a seizure when you shine a light in his face? Would you punish a diabetic for going into insulin shock when you forced her to eat sugar? Would you punish a child with dyslexia for not being able to read?


Once again this is the age old assumption that children have "tantrums" due to bad parenting. Very, very hurtful to someone who has a child who has these outbursts. He's not a brat. He has Autism. A little more compassion, a little less judgement. 


Once Jack had calmed down after his meltdown, we hugged and apologized to each other. We both cried. I told him I was sorry that I grabbed his DS out of his hands, and he told me that he was sorry he said all those mean things to me when he was angry. He didn't mean any of those things. He was just so upset he was using his words as weapons.


We don't believe in punishment just for the sake of punishment. Real life has its own consequences. If you say mean words to people in anger, the punishment is watching the person you love cry. Isn't that punishment enough?

Ghosts of Christmas Past

Every year as I'm unpacking the Christmas boxes, I find treasures packed among the tissue paper, like old friends come to visit for the holidays. So many ornaments remind me of the people who gave them to me, friends or coworkers I may not have seen in decades.

The most precious of these, of course, are the ones my son has made with his own little hands. Paper plate Santa faces:

Christmas trees created with tiny fingers dipped in green paint:

Ornaments made from macaroni glued to a paper plate and spray-painted gold:

Some are meticulous copies of an original:

Some reflect a more bohemian style:

Most were made at school:

Others were created at home in a spontaneous outburst of holiday enthusiasm:

All of them are so precious. They remind me how fast he's growing up. My days of macaroni Christmas ornaments are behind me. I probably won't get anymore gifts made of handprints. But all of these ornaments are a living memory of my little boy. Every year when I take them out of the boxes, I remember how little he was when these treasures were made. How proud he was to bring them home and hang them on our tree.

All are a reminder that the best gift I've ever received is my precious boy. Happy holidays to you and yours!

Autism's Amazing Power of Self-Focus

Some animals eat their young. And I think I know why. They're probably sleep deprived because their little ones won't let them sleep.

Charlie's been working some late nights lately. It's really hard on him, cause he's not a night person. He doesn't have as much energy as he used to. When we were first dating, we could both work all day and afterwards go to dinner and a movie. These days I'm in my pajamas as soon as the sun goes down. We're normally in bed by 10:00 pm. Might watch the news for a few minutes, but I'm usually out by 10:30. I have to get up early to get Jack off to school. There is no sleeping late in this house. Jack won't allow it.

He's gotten pretty good about falling to sleep in his own room most nights. We have a whole bedtime routine we follow: bath, snack, reading, teeth, bed. The flannel sheets and pre-warmed bed (I turn on the electric blanket when he gets in the shower) make his bed all cozy and sleep-inducing. A small dose of doctor-prescribed Melatonine helps, too. But sometime during the night all this coziness wears off, and then he's awake.

Usually when he wakes in the night, he just stumbles into our room and crawls into the sleeping bag that's a permanent fixture on our floor. Most nights I'm not even aware of his arrival. I just find him sleeping there in the morning. It's those occasions when he wakes early in the morning and can't get back to sleep that are a problem.

Today was one of those mornings. My sleep was interrupted by lots of rustling sounds from the floor below my bed. "Jack, be quiet! Daddy and I are trying to sleep!" More rustling noises. "If you can't sleep, get up and go play on the computer. But be QUIET!"

"Can I take the dogs out?"

"Just go out and be quiet!"

By this time, Daddy, who didn't get to sleep until after midnight because of his late shift, is awake and not happy about it. "Jack, if you can't be quiet, you're gonna have to sleep in your own room from now on!"

Lots of self-recrimination ensues on Jack's part. "I'm so stupid. I don't deserve breakfast. You should just kill me!" Such a drama queen!

I have to remind myself that his brain works differently. He just doesn't seem able to empathize with the feelings of others. My friend Melinda says he's very "self-focused." That's one way to put it. He'll cry and be upset if he sees animals or children being mistreated on TV, but he doesn't seem to be aware of the feelings of those around him.

One of my favorite shows is "Parenthood" on NBC. They have a character on the show, Max Braverman, who has Aspergers. His behaviors are very similar to Jack's. A few weeks ago they had an episode where Max's parents have promised to take him to a museum, but they end up having to work that day and aren't able to go. Max's sister has to study, so she can't take him. Max, who is about the same age as Jack, decides to go by himself. He ends up getting lost and being returned home in a sheriff's car. Max's sister, Haddie, is the neurotypical sibling who bears the brunt of Max's behaviors and has just had enough. Watch her reaction when Max is returned home to his family: Max Comes Home (Parenthood). He's completely clueless about the worry and anxiety he has caused all of them.

Jack's world pretty much revolves around Jack. I don't think it's so much selfishness as it is self-absorption. He can be very loving and sweet, but he's very focused on his own needs, often to the exclusion of the needs of others. I'm hoping we'll be able to teach him to think of others a little more. I'm just not sure how much his brain will let him. But we'll keep trying.