I really can’t believe we are rounding out our final week of our first leg of treatment. It has absolutely flown by. These two are still having a ball with each other. Claire started crawling on July 1st, my parents arrived for a visit last Wednesday, and we received two precious care packages with tons of goodies for the kids. Lots of love, lots of laughs, lots of memories.
During our first week of treatment we received more information than any human brain can possibly process in a year. We were so grateful to finally have the words to describe this horribly bizarre and dynamic “thing” that was going on with our son. I guess I thought we had finally received our answers and we would continue on through our eight weeks of treatment and many years from now we would eventually get to a place where Tommy would be somewhat “cured” and he would ask for enchiladas and seared sea scallops and we could go on about our lives with a healthy, thriving boy. The therapists have been fantastic about slowly and methodically explaining each and every subset of SPD and which parts of the disorder specifically pertain to Tommy. We were told very specifically about Dispraxia and I remember simply nodding my head as if I understood. But I know now, I didn’t. It was as if my ears shut off during this part of the conversation but my head kept nodding. It wasn’t until a meeting this past Tuesday with the psychologist on staff that I really heard, absorbed and processed what was really going on.
The doctor and I were in the room and Rob was on the phone listening in from miles away. We went into the meeting with questions about how to parent a child with SPD, specifically as it relates to discipline. Tommy is generally an amazing little boy and while we don’t have to usually discipline too much, we recently have had to buckle down so much more this past year. He would frequently throw tantrums around meal times, when he had to get dressed, brush his teeth, or do anything without several warnings…”We’re leaving in 10 minutes Tommy. In two minutes you have to get out of the shower.” Etc, Etc. So we simply thought we would ask questions about discipline and get answers from a specialist that had incredible experience with children struggling with SPD. Little did we know that every moment of the day Tommy was either struggling with a fight or flight reaction sensorily or simply reacting out of frustration from a subset of SPD that we had yet to really understand.
She started off by saying very simply, “If a child is Dispraxic on a level of 1 to 100, Tommy is about a 120.” My heart shattered. This was the first time I had really, really heard those words.
The Dispraxia Foundation website describes it as “…a neurological disorder throughout the brain that results in life-long impaired motor, memory, judgment, processing, and other cognitive skills. Dyspraxia also impacts the immune and central nervous systems. Each dyspraxic person has different abilities and weaknesses as dyspraxia often comes with a variety of comorbidities. The most common of these is Developmental Coordiantion Disorder (also known as DCD), a motor-planning-based disorder that impacts fine and gross motor development.”
The Doctor explained it to us quite simply. Imagine everything you do is a sequence set of stepping stones to get you from point A to point B. Children like Tommy can stand on point A and not see the next stepping stone in front of them. They can’t properly process the next movement in their brains. She went on to explain that most normal children may have to learn something new in life maybe 10, 20+ times in order to have a generally good grasp on how to do it. For example, learning to put shoes and socks on. Tommy will have to successfully put his shoes and socks on 1,000+ times, in the same context in which he originally learned the action. So if Tommy learns to put his shoes on in a blue chair right by our front door, he will have to repeat that action for years before he can do it without assistance. This is just one of the thousands of examples of everyday tasks that may seem so simple to most, but for someone dealing with Dispraxia require monumental feats to accomplish.
Another example happened just yesterday. We purchased some child scissors for him the day we arrived here and he’s been cutting everything he can get his hands on. I pick up strips of paper every day. Yesterday when he woke up he went right to the drawer where we always put his scissors and he grabbed them and walked over to me and asked, “How do I cut mama?” He had forgotten the action overnight.
Dispraxia and motor planning affect Tommy with his eating as well. He will have to repeatedly learn about a single food thousands of times, hopefully try it, know that it’s safe, and continue to try it again thousands of times before he will remember its ok to eat it. This is why he may try something one week and then two weeks down the road not want anything to do with it…this is very typical for Tommy. Our new schedule includes three meals a day (all at or around a specific time frame) and two snacks. Every meal will occur at the same table, in our kitchen, in the same chair, every day for years in order to set a consistent routine for Tommy to allow him to properly learn the action of how we will eat our meals. Of course there will be times when our routine will have to be adjusted for special occasions, but generally speaking, this is our new normal. During the school year he will have one snack a day and then come home for lunch, so he will learn the action of eating his snack at school and hopefully it will become safe and consistent for him.
Tommy cannot dress himself, he cannot fasten a button or zip a zipper. He will rarely use forks or spoons to eat. He will not play on a playground when other children are present, except if at his school because it’s familiar. These are just a few of the thousands of textbook things Tommy can and cannot do as a result of his Dispraxia. The conversation with the psychologist finally brought so much clarity to our situation, but at the same time brought so much sadness.
Dispraxia will affect Tommy for the rest of his life and we will have to make life-long adjustments at home and at school to continually set him up for success every single second of the day. The positive side is that Tommy’s intelligence will not be affected at all, meaning, he can learn anything and his brain will still function normally; however, its the act of learning and remembering a motor plan to execute the actions he’s learned, that is not functioning properly.
When we get home, I plan to create pictures for visual cues of most everything in our home as it pertains to Tommy. Our therapist are helping me so much with this and I will continue it through to every room in our home. This will help Tommy to remember where everything belongs and help him to remember, for example, what the action of putting on his shoes or brushing his teeth looks like.
After our meeting I went home and couldn’t even get the words out to explain to Marijane what was going on. I tried, but it was so hard. Over the past few days I’ve taken short breaks to sneak away and research Dispraxia but the minute I do I just start to get overwhelmed, and emotional and I have to step back. It’s taken me days to write this with a clear head and no tears when I think about the road we have ahead of us.
Tommy is alive and flourishing. He is happy and physically healthy. This is not fatal, but there is no cure. I’m trying to stay very positive; but for a moment I needed to feel sorry for myself and pray that God would give me and Rob the strength and the patience we need to constantly support Tommy. There are going to be days when I know it will be excruciating to walk Tommy through something he’s learned a billion times, but I know I can’t show him my exhaustion. He deserves nothing but total support and we’re going to give him every ounce of it in us.
Rob and I were given a precious gift on a beautiful summer day in June four years ago. He is not ours to keep forever, but God has entrusted him to us to help him learn and flourish and grow into the amazing man I know he will become. We have a major job to do. We have days ahead that will be full of joy and days that will be full of frustration and exhaustion. However, I know God will continue to guide us in the right direction. I’m standing at the edge of a major crossroads in our life and I’ve just got to grab Tommy’s hand and jump. I believe in him, and I believe his future will be bright.