The Rules

On my way home I pass two houses and I often look to see what toys are in the yard. I don’t know these families but they have little boys that are the same age as Mark. I discovered this when Mark was around one and we had just moved into our house. I would see their kids toddling around when Mark couldn’t walk. As I drive past their homes now I’m always interested to see what they’re into, big wheels, slip n slide, ride on tractors,  all things that aren’t part of our repertoire but that I wish would be. It always stings a little but what hit me this week was watching one of the little boys ride on the lap of his dad on the lawn mower. That could never happen. Not according to the rules that have begun to form and solidify in our house. 

In the past six to nine months we’ve slowly grown to follow a set of strict, frustrating rules to keep the boat from being rocked.

If we go to Panera, we must sit in certain places, with Mark in his seat on the end of the table watching Daniel Tiger on my phone. 

If we go grocery shopping, it must be to Wegmans, as a family. 

If we go to his school, we must return home on our usual route and may not deviate by even one exit. 

Going someplace new? Expect a meltdown. 

New therapist? Tears.

Stopping at the mailbox on the way out of our lane? Song singing must commence in order to prevent an unraveling moment. 

Fireworks? Family vacation to the beach? An afternoon at the pool? Nope, nope, nope. 

Unexpected stop for gas? Expect screaming. Need to go to the post office? Or run in to pick up pizza? Good luck, comrade. 

So this week when we had to go from his school in Odenton to downtown Baltimore for his lab work appointment this meant complete screaming, for the entire 35-minute car ride. 

Life is messy. As much as we try to stick to routines, it’s impossible to do everything the same and it’s not good for anyone in the family, including Mark. Yet we know that to keep the peace it’s what we strive to achieve. We dread unexpected and new experiences because we know that they will confuse, frustrate and frighten Mark. 

It broke my heart to leave him home from our family trip to the aquarium last month but I knew that it was highly likely to upset him and Jillian wouldn’t be able to experience it. As we gear up to attend the FamilieSCN2A conference in Delaware next week, which will require an overnight stay in an unfamiliar space, I am incredibly anxious. New roads, new state, new gas stations along the way, many places and buildings with which he’s never been.  I can only imagine how frightening this is going to be for him. 

We recently had an appointment with a Developmental Optometrist who explained that Mark isn’t able to use his vision properly. He can see, but the images he’s receiving, his brain isn’t interpreting the way it should. So when he’s in a new space, he’s frantically trying to touch everything, and take it all to understand it. What this looks like is stim behavior, pacing and running back and forth between doorways and furniture, but the doctor believes that Mark is creating a mental map to better understand where he is in space. We see a lot of truth to this and as we work with our behavior therapy team and new IEP team for school this fall we will definitely be taking this into consideration.

But we are where we are, and we’ve slowly become so boxed in that I didn’t realize how cornered we were until I saw that little boy riding around on the tractor with his dad. That could never happen, not right now at least. 

Social stories and video modeling, along with practice have become how we slowly navigate new and scary things but it’s a lot of work to prepare him for a world that he can’t understand and I often feel like I’m not up for the challenge.

As I stood in the lab room this week while the medical staff struggled to get Mark to sit still enough to get his blood to draw, as each failed attempt escalated the screaming, sweating and gagging, I stood against the door and I could feel my heart racing. I quickly sent a text to my mom to tell her what was happening and to ask her to pray. Ike and I were both silently pleading that God would allow them to get his blood to draw so that we could bolt from the hospital and then I suddenly burst into tears, which prompted a nurse to remove me from the room. I have watched my little boy have his broken bones set, be placed under anesthesia, held him while he’s undergone so many uncomfortable procedures while he screamed. I would often hold his face and sing into his ears as I hoped I could make it through and calm him, but not this day. This day the enormity and gravity of our uphill challenge, and perhaps my pregnancy hormones took over and crumbled me. Nurses asked me if this was my first time watching him give a blood sample. No, I said quietly as I continued to plead in silent prayer that the screaming would stop. Eventually, it did and my sweet boy emerged sweaty, tired and bruised from all of the botched attempts, which were of no fault of the staff, according to the nurses, they had their best in that room. Mark was just incapable of not panicking and flailing. Thanks to an angel named Ali from the Child Life department the torture ended when she suggested a comfort hold that finally worked. And it’s moments and people like that who shift me to focus on how God is moving in the midst of the chaos and discouragement. 

I have to remember that because if I start to think about the rules, the boxed in feeling and the giant autism/genetic mutation mountain in front of us, I will end up in a tearful heap just like several nurses and patient families found me. 

So I am choosing to pick my head up and warrior on. We will prep him for his EEG appointment in a few weeks, make our bailout plan for our trip to Delaware and trust in the Lord that He will provide us with the ability to care for him, send us people along the journey to support him, and for us love him and accept him how he is, even if that means beach trips are out and spur of the moment adventures have to be rethought. 

I was reminded this week by a dear friend that it’s is an incredible responsibility to make decisions for someone who can’t adequately communicate. And yet Ike is right, it’s also an honor to care for him. When not in fight or flight mode he’s the sweetest little boy, with his sparkling blue eyes and an adorable dimple that displays during every smile and giggle, which, thankfully, are quite frequent. We may have lots of rules that other families may not have, but we have the privilege of loving and caring for the most joyful soul we’ve ever met. 

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