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.

Our Perpetual Lady of Slow Learners

Lovely couple of kids

Lovely couple of kids

If there’s one thing I’ve learned through my journey as a parent, it’s that expectations can be your undoing. In terms of expectations, mothers are doomed from the start. From the day we pee on a stick and see pink lines, we are an expectant mother. Our pregnancy bible is entitled What To Expect When You’re Expecting, and we devour the information between its covers because pregnancy is so new and different and impending parenthood is equal parts exhilaration and terror. We want to be prepared…as much as anyone can be prepared for the arrival of something so much a part of oneself and yet totally unlike anything anywhere else. While our children begin their lives unencumbered by the existence of expectations, we embark on our parental career ready to measure them against the rubric of the typical. And that’s the point when we make our first big mistake.

I knew fairly early on that our sons were not typical. They did not follow growth and development charts. They were on their own schedules. Things their peers were readily learning, our sons could not. They skipped letters in the alphabet  and struggled to write their own names. They were uncoordinated with sports and were unable catch a ball or skip or follow rhythm. Physicians noted their shortfalls while reassuring us that they were fine. In school, they displayed obvious intellect while retelling stories or playing creatively, but rote memorization of math facts escaped them. They began to get poor marks on tests science and social studies tests despite knowing the answers when asked orally. We were frustrated. We knew they were intelligent, but their grades didn’t reflect it. Teachers told me they weren’t trying, but I knew how hard they worked. I could see their constant struggle to keep up and fit in with expectations they now innately understood by watching their classmates and receiving their report cards. When we finally realized that they had learning disabilities, the damage had been done. Our sons no longer believed they could be successful. Expectations were crushing them.

This year we pulled them out of traditional school and did what we swore we would not. We put them into a special school, a school for children who think differently, a school for the atypical. We’d been hesitant to take this route, fearful of pointing out to them and to others that they weren’t measuring up in regular schools. But the time for denial being a river in Egypt was over. They needed help…no matter what that help looked like. Their new school was a big adjustment for me. You see, there are no grades there. None. Kids aren’t in 4th grade and they don’t earn letter grades. They’re not evaluated that way, and teachers and students don’t discuss grades. They discuss progress. They discuss solutions to struggles. While the kids are evaluated regularly, they are assessed solely on improvement. If they’re improving, they’re on the right track. If they’re not improving, it’s time to re-evaluate how they might learn better and pursue a different route. It’s so simple it’s scary.

And, honestly, this new system of analysis did scare me. I was so tied to our traditional conventions that the variation seemed dubious. As a culture, we subsist on numbers and quantitative results. Our conversations with other parents about our children often revolve around concrete standards. Bobby came in First at State. Jimmy has a 4.0. Sue got a 1300 on her SATs. Hey. I get it. It’s an accomplishment and a feather in our caps when our child is successful in a way that we can readily point out. I know from personal experience, though, the other side of that equation. When our sons were earning C and D grades, I perpetually feared having someone ask me about their report cards. I knew that based on their grades our boys would be marked as sub par by others, and that was frightening. And now when they’re getting no grades, well that’s even scarier. When you tell someone your son is “around the 4th grade level and is a consistently improving student,” they look at you as if you’re sporting three heads. No one is up for flexible standards of personal success although that is the only type of personal success there is…the personal kind.

If we’re going to live by expectations (which we seem bound by human nature to do), perhaps we could be a bit more flexible with our assessment of others? We could accept steady improvement as our rubric. We could value overall forward progress over typical milestones because the truth is that not everyone is typical in every way. Our sons are slow learners because their brains process information differently than the majority. So what? It’s taken me almost 46 years to believe that a piece of paper doesn’t prove wisdom and all the outward success in the world doesn’t make you a better person than the next guy, and that makes me a pretty slow learner too. I’m learning to let go of expectations and becoming more patient with myself and with others. It might be two steps forward and one step back, but I’m making progress just like my sons. By the end of my life, I like to think I will have evolved not just to standards but beyond them in ways that are immeasurable.

I threw away the books that told me how my children should be. I now appreciate them for how they are.

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.