My precious Claire you are a beautiful light in our lives. It’s been nine amazing months and you have been such a gift. You continue to adore your brother. He snuggles and holds you, and he constantly keeps you safe when my eyes turn away for just a moment. He always says he wants to protect your head so you won’t fall as you are crawling around everywhere…it’s precious. You go with the flow. You smile every minute and you laugh often. We still think you look just like your dad with those precious cheeks and your stunning baby blue eyes. You have two tiny teeth and are growing more as we speak. You weigh a ton and you eat constantly.  Your just a happy, happy baby. Thank God for you sweet lovey.

 

When I walked outside of our hotel in Denver early on Saturday morning it was chilly. I took one last deep breath of the crisp, cool air and sadly loaded the kids in the car and we were off. I looked out our car window at the beautiful mountains in the horizon. It had rained hard the night before and it was as if the skies opened and the sun was radiating through the clouds. I absolutely didn’t want to leave.

I love Denver. I love the air, I love the mountains; but most of all I loved our protected little world of the most amazing therapy for our son. I was terrified to come home without the comfort of knowing that tomorrow would start another day of amazing work and growth for Tommy in the perfectly controlled envorionment at STAR.  I know in my heart this four week break is so necessary for him. There will be no occupational therapy and no feeding therapy, which is so hard to believe; but at the same time, so critical for his little brain to relax. He worked harder up there than I could have ever imagined, and now it’s time for him to just be the little four year-old boy I know he can be.

When we got back on Saturday, everyone was exhausted. We walked in the door and dropped our bags and crashed. As I write this, I still see several of those bags in the distance, untouched. There are piles of laundry, dishes in the sink, and two Real Simple magazines begging to be opened…and all I have the energy to do is sit in my bed and write.

So many people have checked in on us over the past few days and it has meant the world to me and Rob. Several have asked how Tommy has been adjusting to being home and the truth is he’s so happy. He’s spent a lot of time just being with family and enjoying his playroom again, which he loves. Our precious pups have loved having everyone back in the nest too. They want to be right in on the action and stay as close as possible to the kids.

Every day this week I’ve been doing the best I can to slowly unpack and organize the house so that it is more manageable for Tommy. My hope is to get to a point where everything he needs in his daily routine has a consistent place and a visual cue for him. It certainly won’t happen over night…but we’ll get there.

One task we started immediately when we returned home is our new meal schedule. Although I was apprehensive about it, Tommy has been adjusting well and has managed to sit at our table and eat everyday, five times a day, with no problem. This is a HUGE mountain we are climbing; but the predictibility and consistency of our meal and snack times has helped him tremendously and I’m thrilled with his progress. We eat at the table, in Tommy’s special chair, with a red placemat and yellow plate five times a day. Breakfast is (at or around) 7:00am, snack 9:45am, lunch 12:30pm, snack 3:00pm, and dinner at 5:00pm.

Everyday he gets to choose his meals and snacks from a list of his preferred foods. After he chooses one it gets pulled from his list to try to push him to expand his foods throughout the day. The goal is to have one food from each group at each meal, and the goal is to give him some control of his meals to get him re-engaged with eating. It’s been tough considering he has so few foods to choose from, but he’s slowly getting the hang of it.

The biggest challenge with this process is the fine line we have to walk to keep each meal he eats new and engaging. The goal is to prevent what they refer to as “Food Jag” where he will eat a food so much that he will eventually refuse it.  We do everything in our power to avoid this by ever so slightly altering the look of the foods. For example, he loves mini circle shaped pancakes and we have to cut them into different shapes or use cookie cutters to “surprise him” and keep it fresh and exciting.

The question I am asked the most is if Tommy has tried any new foods yet. Sadly, the answer is no, not yet. Because of his Dispraxia it will most likely take him years of being exposed to a “new food” before he puts it in his mouth and actually eats it. He will have to subconsciencly work through the 32 steps of eating that include tolerance, interaction, smell, touch, and taste before he actually eats it. This is our biggest challenge every day to continue to expose the same foods we’ve slowly been learning about from the beginning of his therapy. We have to walk a very fine line between acting like its totally normal to “learn” about foods at every meal and making sure he gets some sort of interaction with it, while not over loading him with it. There are some foods he can’t even tolerate visually so we are working at a snails pace. Every day has its new set of challenges and every day I have to constantly remind myself of the massive work and patience it will take to walk on this journey with him, but I’m up for the challenge.

In the mean time, Claire’s enjoying the extra meal times and sister doesn’t miss a friggin meal. She just eats all the time and it warms my heart. As odd as it sounds, this is the first time in my life I’ve really had to feed a baby because the truth is that it never happened this way with Tommy. I can’t keep enough food in my house for her and I just love it.

The sweetest moments happen when I least expect it. I look at her and I look at Tommy when we are at the table and she is constatly staring at him, studying his every move, smiling and cheering him on as he eats. It’s as if she knows the amazing things he’s doing. They’re a great team. She loves him and I think the feeling is mutual.

 

 

 

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.