Sensory Processing Disorder

A Belated Holiday Letter For All The Late Bloomers

On their way to becoming awesome…someday

On their way to becoming awesome…someday

I was rifling through a stack of papers on the counter yesterday and came across a holiday letter that arrived in a card from some friends of ours around Christmas. Okay. I feel your sneer of judgment. Yes. I still have holiday mail on our kitchen counter. Guess what? We still have a broken, faux Christmas tree lying on the floor in the rec room too. I’m leaving it there at least until Easter to prove how very zen I can be in the face of ridiculous things. So there. Anyway, I opened the letter and reread it. It was, as most family holiday letters are, a beautifully composed, loving tribute to our friends’ apparently flawless, exceptional, decorous, loving children. I’m a natural skeptic, so I’ve always assumed children like the ones outlined in those letters are figments of fantasy, like Santa Claus, the Tooth Fairy, and men who multitask…a charming idea, but a complete fabrication. Still, we get many letters just like that one every year, rife with phrases like Eagle Scoutstraight A honor studentVarsity letter, State championships, class president, volunteer hours, and first place, which are aimed at making me believe that children like this exist in families all across this nation. It must be reality for some people.

Friends have asked me why I do not send out a letter with our Christmas cards. They figure that a writer should be at the top of the list of Persons Most Likely To Write A Holiday Letter. But I don’t because comparison is an ugly thing. We don’t have the kind of children who look good on paper. They’re off schedule and complicated and not in line with many other children their ages. In terms of learning, our children are classified as “atypical” and that doesn’t play well without lengthy and exhausting explanations. Even though we don’t write holiday letters, we think they’re awesome. We’ve just accepted that their beauty sometimes gets lost in the comparison game.

If I were to write a holiday letter, it realistically might contain paragraphs that read something like this:

Joe is thirteen and in seventh grade this year. He’s completely immersed in Pokémon and adores Japanese culture. He keeps asking when we can go to Tokyo. He used most of his Christmas money to buy Pokémon plush toys that he and his brother use in elaborate stop-motion video stories they are creating for their YouTube channel. Despite his ADHD and dyslexia, he’s making great progress at school. We are so proud that he’s using capitals and periods in his schoolwork on a more consistent basis these days. He’s still reversing his Bs and Ds, but we are hoping that he’ll have that mostly figured out by the time he’s writing college entrance essays. Joe has finally mastered the coordination and multiple steps to tie his own shoes now, which has taken one thing off my plate. He uses about 400 knots to make sure they don’t come untied, though, and that has created a different hassle as I now have to unknot his shoes each morning. Be careful what you wish for! After two years of private ski lessons, his core strength and coordination have improved enough that he has a mastery of most beginner slopes. We hope to have him exclusively skiing intermediate slopes by the end of next season. His favorite books are graphic novels, his favorite food is pasta, and his classmates call him “Puppy.” He never misses his nightly spa time, which mainly involves sitting in the bathtub while watching a continuing stream of Netflix videos on his iPad from across the room. Thank heavens he was gifted with great eyesight and the brains to know not to bring the iPad into the tub with him.

Luke is eleven now and in fifth grade. He is a talkative, class clown, and his teachers have initiated a rewards system to keep him reined in during class. So far it seems to be working because our last parent/teacher conference went off without tears. This year his decoding skills have gone off the charts and he is reading at a beginning of fourth grade level. He’s still struggling with fine motor skills and his pencil grip is downright bizarre, but his handwriting is bafflingly lovely. He loves to draw, write stories, build Legos, and watch episodes of Parks and Recreation. And, this year he began catching footballs successfully. He’s still two inches shy of being tall enough to ditch the booster seat in the car, but he’s getting there! His latest career aspiration is to be an entrepreneur/architect/engineer, but he’s planning to author books in his free time, which we think will make him quite well balanced. His sensory issues force him to sleep in a nest of blankets, pillows, and plushes, but he showers regularly, doesn’t eat in bed, and sleeps on the top bunk so we are reasonably sure there are no rodents up there with him.  All is well and we are grateful. 

Now, this holiday letter fodder might seem a bit hyperbolic, but overall it’s an accurate account of life with our exceptional sons. They are not straight A students. They are not athletes. They are not overachievers. They’re not on the Dean’s List. They’re not first chair in orchestra. They struggle a lot, work hard to catch up with other kids their age, and keep plugging away. They are, in every way I can see, damn near perfect human beings, emphasis on the human part. And I may never be able to write a holiday letter extolling the impressive scholastic or athletic achievements of their youth, but I could not be more proud of my young men.

I don’t begrudge any of our friends the joys of having children who are achieving at a high level already. After all, it’s a lot of work being a parent, and a smart, capable child who is excelling in many things can only do so with personal support and chauffeur services. My friends have earned the right to brag about their offspring. As for our boys, I suspect they are simply late bloomers. Sooner or later, all their hard work and dedication will pay off. And someday I’ll send out a holiday letter to share how far they have come. Our Christmas card with personal letter in 2035 might just blow your socks off.

Parkour and Seven Years Ago

Our little guy works on his vault skills.

Our little guy works on his vault skills.

“To try and fail is at least to learn; to fail to try is to suffer the inestimable loss of what might have been.”
― Chester Barnard

When our boys were little, we did what all suburban parents did. We enrolled our kids in class after class, letting them try out countless activities to see what might be their thing. We tried swimming, soccer, baseball, tumbling, and multi-sport camps. Nothing clicked. I can’t tell you how many times our sons did not advance from a basic swim class. I can recall four different swim schools that could not teach them. We were beating our heads against a wall. I used to complain that if I could get the money back for every class they attempted and found no success in, I could fly to Europe and back. Twice. Yet, we persisted in our parental folly and perpetual money wasting because we felt they should be able to do these things other kids could do. Our expectations told us to hang on. If we threw enough money at it, sooner or later something would have to stick, right?

When they were 4 and 6, they were diagnosed with sensory processing disorder, which affected their fine and gross motor skills. They had very low core strength, as well. This explained why swimming and tumbling were nearly impossible for them while other kids their age breezed through without any trouble, but it did not make us feel any better. With assistance from occupational therapy twice weekly, they both learned to ride bicycles after they turned 8. They still had difficulty throwing a ball. Catching one was nearly impossible. Over time and with continued therapy, their core strength improved. They made progress, but they were still years behind other kids their age physically. We accepted it for what it is, and we stopped enrolling them in activities that made them feel slow, incapable, and defeated. We figured there was no point pushing them when they physically and mentally were not ready to be successful. We made the choice to let them just be kids. Time would take care of the rest.

Tonight, we made a big leap. We decided it was time to try again. I drove them to Apex Movement, a parkour gym, and enrolled them in an introductory class. I’d heard about parkour years ago from a male occupational therapist who worked with the boys and thought it might be a great thing for them. At the time, I showed the boys videos of professional parkour to pique their interest. They thought it looked cool, but weren’t totally on board. I talked about it the last two summers, telling them I could register them for parkour camp. Still…no interest. I reminded them of their successful work on the climbing wall at school and told them they were ready to take this step. No go. Then, lo and behold, a couple of weeks ago both boys come to me and tell me they want to try it. I thought I’d finally gotten through to them. Nope. Turns out their friends are doing it. There you go.

On the way to the gym, Joe was nervous. He began telling me that maybe he could start next month instead. I told him that you’re always nervous the first time you do something. It’s that nervousness that tells you that you’re actually growing. If you go through your whole life, never putting yourself in situations that make you uncomfortable, you never progress. I reminded him of some recent times when I had been nervous about something and how it worked out without incident. You can’t have success if you’re afraid to risk failure. I reminded him that his success rate so far in surviving uncomfortable, new experiences was 100%. All of the times he’s tried something new, he survived and was better for it. This would be no different.

When we got to the gym, the boys could barely stand the waiting process while I filled out waivers and verified payment and class information. They were dying to get out and jump around. When they got the all clear, they went into the open gym time and started trying out every obstacle they saw. When class started, they listened and tried everything that was asked of them without concern about failure. As I sat watching them make honest attempts at new things, some successfully and some with definite room for growth, I was so proud of them for being willing to move forward and try again, for facing their nerves and taking a chance on themselves. I was a fearful child. I did not learn how to take risks. I instead learned that failure is not an option. I hid behind excuses so I didn’t have to try anything. I left important things unsaid and undone. I avoided opportunities to make mistakes or do goofy things until I was in my forties, when I finally realized that I was letting life slip by unlived.

Most of the time, I feel I am an adequate parent, just good enough. I try. I make mistakes. I apologize. I try again. Tonight my boys showed me something. They’re braver than I was at their age, which means we are all making progress. We’re learning to give ourselves a chance. Seven years ago, my kids weren’t ready for the opportunities we gave them. And seven years ago, I made a conscious decision to begin work on my own risk-taking skills. Now here we all are together. The stars and planets have aligned. We are still nervous but trying because it’s better to try and fail and at least learn than never to know what might have been. Who knows with a little parkour and seven more years where we might end up?

The Tale of Two Bunnies

These two bunnies may resemble each other but they are unique in their bunniness.

These two bunnies may resemble each other in form, but at the end of the day they are unique in their bunniness.

I have two sons. Although there are some similarities between them, mothering these two boys forced me to acknowledge the universal parenting truth. Parenting is not a case of nurture versus nature, but rather a case of how you choose to nurture your child’s nature. Now the fact that I know this to be true should in no way imply that I understand how one actually achieves this goal of parenting differently in the best interest of each child’s personal growth. I struggle with this daily because, like most parents, I would like to believe that in a nod to fairness I love my sons in the same way and treat them equally. It’s just not true on a day-to-day basis. They’re different people. They have different strengths and weaknesses and present unique challenges and lessons to me as their mother. They are both easier to raise than their brother in some ways and more difficult to raise in others. It is what it is.

My oldest son, Joe, has moderate ADHD. What that means for him is that he is impetuous, has a hard time focusing on anything, and even though he often knows the “right” way to do something he usually forgets to do it. As a parent trying to teach him to function in the world, his struggle with working memory has been a plague upon us both. When he was very young, his lack of follow through was something I did not think much about. I wrote it off saying he hadn’t yet reached that developmental milestone. But by the time he was six and his four year old brother began following through on things and completing multi-step directions where his older brother could not, I knew something was amiss. Still not aware that his brain struggled with working memory and processing speed, which was why he could listen to me rattle off a short list of things to do and then not remember to do them, I wrote it off as his personality. Joe was forgetful. It was his nature. It was my job as parent to correct this error in his way of doing things. I hounded him. I repeated things until I was hoarse. I followed him around, riding rough-shod over every single thing I asked him to do to make sure he would do it. About this time in my parenting journey, I really could have used today’s Bunny Buddhism quote:

I cannot impose self-discipline upon other bunnies.

I cannot force Joe to behave the way I behave because he is not me and he never will be. His brain does not work as mine does. It is as unique and interesting as he is. And no amount of badgering, belittling, or begrudging will make him act in the disciplined way I wish he would (if only for the sake of his own well-being and sanity). Even if I nurture him by providing charts and introducing him to life hacks to work around his memory issues, this is his dragon to slay. He will take from me what his mind is willing to accept and use and in time he will find his own way through trial and error, peaks and pitfalls. Likewise, I will never be able to stop his brother Luke from chewing on his shirts and leaving holes as if a goat has been wearing them. I don’t understand why he does it, but I know I can’t make him self-disciplined enough to cease and desist. It’s just not happening.

Perhaps someday Joe will remember to hang up his towel and put his clothes in the hamper. Perhaps not. He is his own bunny. He needs to find his own way in his bunniness. I can nurture his nature, but I can’t affect the outcome. And to try to do this only damages the relationship we have. I have made my own bunny peace with Joe’s memory issues. Oh. I still make him come back upstairs to hang up the towel he left on my bathroom floor because, well…I’m not his slave. But I no longer think it is my duty to turn him into the towel-hanging kid his brother is. He’s a different bunny than his brother who chews shirts who, in turn, is a different bunny than me (the one whose mother tried unsuccessfully to stop her from biting her nails).

My journey to zen is aided daily by my children who are teaching me more than I will ever be able to teach them.

The World’s Best Kindergarten Teacher

Luke with Miss Jackie at Unique Prints. He had to try to stay inside the barrel why she tried to toss him out. He loved that game. The look on his face is pure joy. Money well spent.

My boys were fortunate enough to have the world’s best kindergarten teacher. She literally changed their lives with her insights into them and their issues and with her genuine love for them and their uniqueness. Sandra was the first one to suggest to me that there might be an issue that was causing our oldest son to be years behind his classmates in terms of fine and gross motor skills. It was Sandra that pointed us to Unique Prints, a therapy gym specializing in children with Sensory Processing Disorder (SPD). Sandra gently helped us to see what we had not understood or were not willing to acknowledge. Our boys needed extra help, and there was no shame in that.

As I look back now over the last five years, it’s amazing the progress I’ve seen in my boys. They still battle some sensory issues, but they’ve come such a long way. The time I spent driving them an hour round trip to Unique Prints two or three times a week so they could “play” in the occupational therapy gym while I sat in the waiting room was well worth it. Because of Joe’s original diagnosis with SPD, we were able to diagnose more quickly that he had ADHD as well. Therapy is expensive, but we were fortunate to have great insurance that paid for most of what our boys needed. There are plenty of people out there who want to do the right thing to help their children but don’t have the means we do to get them the help they need.

When our youngest was in Sandra’s kindergarten class, he had a classmate with whom he continually knocked heads. I often worried about Luke in these tussles because Luke is a small kid and his classmate was on the other end of the size spectrum. I was concerned that Luke was being bullied because Luke told me he was sometimes afraid of the other boy. I went to talk to Sandra about my concerns, and she pulled me aside and let me know that the other child involved had issues of his own. She never disclosed exactly what was going on with him, but she told me that his family struggled with his issues the same way we were struggling with Joe and Luke’s issues. She also told me that they were good parents who were trying to do the best for their child that they could. Her honesty about the situation helped me to understand. I felt bad that I had looked at that other child the way I’m sure other parents had looked at my children with their issues, with no compassion or desire to understand but with judgment. And, in the end, when the other boy left the school to get more specialized treatment, I was truly sad to see him go.

Today, Sandra posted a link to this video for a family looking for assistance for their not one, but two, sons with autism. The family would love to get a therapy dog to help their boys. But, therapy dogs cost around $6k, and that’s a lot of pocket change for most families. I watched the video because Sandra had recommended it, and Sandra is good people. I immediately recognized that the older son in the video was Luke’s old classmate. I watched the video and had a good cry. It’s amazing how life works sometimes, how it puts you in touch with people and situations that, if you’re lucky enough to be paying attention, will teach you the lessons you need to learn.

Life is hard. We all have our challenges and limitations. We all are on a journey that no one else can take for us. I can’t expect other people to be patient with my sons’ issues if I’m not willing to be patient and understanding about the struggles other families are having. And, as hard as it has been at times to parent my unique, sensory-challenged boys, I’m so incredibly blessed to have gotten off as easily as I have. Sometimes it takes a special reminder to bring you back to gratitude and peace with the way things are. Today I’m grateful for such a reminder courtesy of the world’s best kindergarten teacher ever….the one who even manages to teach adults a thing or two.