Mighty and the Bean

Over the weekend Jillian had a soccer game at our local school grounds. Ike was away on a camping trip so with the help of my mom we wrangled both kids that morning. Mom and I took turns taking Mark for wagon rides around the middle and elementary schools. As I pulled him along, listening to the games in the distance, I looked at the school and felt a pit in my stomach. He might go here someday and I don’t know what that will be like. Nearby a dad was kicking a soccer ball around with his little boy who looked to be about Mark’s age, and immediately I felt that familiar special needs parent pang of hurt and jealousy wishing I was kicking a ball around with my son, but this time I just thought, “please teach your little one to embrace mine”. And so I began writing this letter in my head…

To My Son’s Future Classmates’ Parents,

Inside your cells lies a nucleus and inside that nucleus is a pair of chromosomes made up of DNA, which consists of nucleotide pairs, G, A, T, and C. When these amino acids are put together they make up your DNA. (Stay with me, this gets better). If you look at the strand of DNA, you would see that there are different sequences and they are broken down into genes. A gene is a string of nucleotide base pairs that create specific proteins, which are involved in every part of your body, from chewing to blinking to breathing. When you and your children were formed your DNA went through a process of translation of these base pairs. It’s a very delicate and intricate process that makes you who you are, and sometimes there’s a mistranslation, which causes a mutation. In many cases mutations are benign, but in my son Mark’s case, something didn’t transpose correctly in an important spot on his SCN2a gene, which for him, causes autism and a number of other challenges, punctuating his life, and ours. This could have easily been you or your child.

Instead of soccer or baseball, Mark spends his time in therapy learning how to match colors, recognize his name and communicate his basic needs. Last week I watched his teacher spend 10 minutes just getting him to sit in a chair to do his work. That’s ten minutes spent on a very simple motion and request that should be easy, but for Mark it’s not. Everything Mark can currently do has taken him 20 times longer than it probably did for your children. He spends an hour in OT every week working on climbing up stairs, using his hands together and learning how to hold on when he’s being swung.

He’s very quiet, and the few words he knows he can’t easily say and he has to be incredibly motivated to use them, but please know he understands what you say. Please let your children know that if they ever have the opportunity and privilege to be in his class that even though he may not be able to talk, he can hear them. He recognizes more words than he can reproduce.

He may do different things that are foreign to your kids. Right now he screeches and growls because the sound and feeling of the vibration feeds his senses. When Mark was diagnosed we learned that he can’t regulate his central nervous system naturally like most of us can. He needs things  like swinging motion, tight squeezes, and lots of movement to allow him to feel “normal”. Mark actually spends a lot of his free time sensory seeking or “stimming”. Sometimes he spins in a circle, becomes obsessed with corners of walls or runs without purpose. He’s just trying to feel good.

However, aside from the things Mark can’t do, and the odd things that he might do, I want you to know that despite these struggles, Mark is an amazing little boy. You’re probably thinking “of course she would say that he’s her kid”. And while this is true, I do absolutely adore him, I am in awe of how he overcomes so many challenges with so much joy.

Mark smiles all the time, even when most people wouldn’t. Every Wednesday I spend an hour in a play gym at an Occupational Therapist’s office and I watch him struggle to place the correct puzzle piece in the right hole. He gets upset, and wants to run as far as away as possible, but we push him through it and eventually he gets it, and my goodness, you should see him smile! If you ever have the pleasure to meet him, you will hear him giggle and I promise you it will be the best sound.

So my point in all of this is that our story could be yours. One wrong translation of your DNA could mean that you are the one trying to teach your three old that his hands can clap, or to use his voice to tell you what things he needs, you could be using your vacation time for medical appointments and spending every last penny (and pennies you don’t have) on medical and adaptive equipment. And you could be afraid, like me. Afraid that other kids won’t understand your child and that they would eat alone at lunch with perhaps an aide or their sibling, and no one would be their friend.

With the incidence of developmental disorders and autism increasing (the CDC currently reports that one of out of every 68 children will be diagnosed on the spectrum), there will be more kids like Mark. Children who have challenges, learn in different ways and have parents who worry like crazy about their well-being and how the world will treat them.

So my prayer is that in addition to taking time to teach your kids manners, how to be safe, and how to ride a bike, I hope that you also include how they could accept and welcome other children who are different and that being their friend is not a charitable act but a genuine interest in developing a friendship. Kids shouldn’t get awards for befriending children with special needs, the reward should be in the value of accepting, and loving their classmate openly and genuinely.

Be the change that is needed, show your kids how to love others without borders.

Sincerely,

Mark’s Mom

Several weeks ago, I sat in the waiting room of the orthopedic office waiting to check out. Ike had just taken Mark out to the car, sweaty and traumatized from the multiple X-rays, removal of his long arm cast and the placement of a new cast. This was the worst appointment of them all. As Ike laid across his strong lower half, I bent over and held his ears tight with my hands to deaden the sound of the saw next to his face. He shook with rage and fear, dry heaved and gagged, and fought us with every fiber of his being. He was terrified and there was no way to tell him the reassuring things you would tell other children. Of course I said them in vain, hoping something I said would magically make it through. And once it was all over and I was waiting to make the next torturous appointment, I felt the weight of our world, and I felt tired.

 

 

I’m tired of everything being seemingly so much harder because of Mark’s limitations. The tech who wrestled his cast onto his arm tried blowing up a rubber glove and giving him a sticker to cheer him up, and none of it made a dent. And if anything it just made me even more sad, almost like it was just another thing I was missing out on in life with Mark.

Ike teared up on the way home. We both felt overwhelmed with the mountains that stood before us. The broken arm was just a symbol for all the things that would always be more challenging because of the hand that we had been dealt.

 

And then one day shortly before the final removal of his cast and after we had returned from our trip to Chicago, we decided to take away his pacifier when we put him to bed. And miraculously, he slept through the night. And then night after night, car ride after ride, and doctor’s appointment after doctor’s appointment, no paci needed. It was amazing.

When Jillian was dealing with her pacifier addiction we bought a book that told a story of binkys being sent away to binkyland. After some resistance she decided to give it up. I thought for sure that Mark would be 7 or 8 years old and still need it. How could he get rid of it if he couldn’t understand the binkyland book? My obviously flawed line of thinking further added to my amazement that he had easily dropped the habit. He hasn’t looked for it, “asked” for it or really seemed bothered that it’s no longer a permanent fixture in his life. Tomorrow will be one month sans pacifier and meeting this milestone had shown me a few things.

 

 

Mark will do things in his own time, his own way and he will surprise us.

 

And yet as exciting as this milestone has been, especially given how few we meet, I’ve been reluctant to share for a number of reasons but namely because as odd as it may sound, it’s hard to celebrate.

 

Recently, a fellow special needs mama cautiously shared her daughter’s accomplishment and I totally understood her reluctance.

 

There’s a sense of “knock on wood” that if I celebrate it, it will be taken away just as quickly and I’ll feel sheepish and foolish. Like when I shared that Mark waved “bye bye” in speech therapy for the first time. Do you know I have not seen him do it since? His words that have been spoken have only been heard once or twice, and I worry that he will regress, lose it all, and someday someone we know will see us out at a restaurant, and he will be sucking on a pacifier, despite previously kicking the habit.

 

And yet there are so many things to celebrate with Mark right now. He’s beginning to make animal sounds, really good, accurate and amazingly distinct animal sounds. He’s begun to point, attempt words, understand more and more of what we say, and he knows how to stop when running in the opposite direction and will come home when told. That one is huge.

 

And yet I’m still so afraid that someday he’ll lose it all. Several conversations I had at the SCN2a conference still haunt me. Parents shared how their children were making progress despite their autism diagnoses and then it started. The seizures. They took everything. And now these children need a number of devices and machines to help them function. So that is why it’s hard to celebrate: you never know when your current challenges and triumphs will fall into the “before” category.

 

But despite the obvious cloud that looms I am trying to savor the goodness of what God has been showing me.

 

 

In addition to the excitement surrounding Mark’s burst of development, I am also in awe of Jillian.

 

 

Her first day of kindergarten was the same as Mark’s last day of his program. One was ending a year long journey and the other was just beginning. It created a weird sense of dissonance in our house.

 

 

At the end of Mark’s last day he brought home a social story that showed him pictures of his new classroom and speech therapist since this will all be different when he returns in September. In a way I felt sad that he needed something like this to transition, and realized quickly that this is the first of a long line of social stories that will help him cope with new things.

 

Jillian’s first day of kindergarten proved to be gut wrenching for us both. The morning was filled with crying, tantrums and a ridiculous attempt on my part to document all of it on camera.

 

She arrived home that afternoon sweaty, tired and emotionally exhausted, just like me. She didn’t say much about her day despite my carefully crafted open ended questions. That evening our neighbor stopped by on his way back from his evening walk with their dog. Of course he asked Jillian about her day, and of all the things to say, she ran inside and grabbed Mark’s social story to tell Mr. Chip about Mark’s new digs at Kennedy Krieger.

 

 

The next day she went to work creating her own social story illustrating what her classroom looks like and what she will be doing. She took something from Mark’s world and used it to make sense of her own.

 

 

She is such a bridge builder. I often look at her and see her completely unphased by her brother’s loud vocal stims and screeches, the pacing in the dining room, the need to have some type of electronic device repeatedly playing the same melody and has almost no issue with the chaos that one little tornado creates in our house on a fairly regular basis. I think I don’t give her enough credit for adapting so gracefully. Fairly recently, he ran over to her, grabbed her arms, stomping his feet, making loud noises and just gripped on tightly. I hovered in the doorway watching, afraid that he was going to pull her hair or hurt her, and she just looked up at me, smiled and said, “it’s just his way of loving me.”

She celebrates him in the ordinary and helps me to remember to rejoice in all of his mighty moments. Jillian will learn a lot this year in school, as will Mark, but I have so much to learn from both of them.