It’s been so therapeutic to be confined to a space with my children and forced to take a breath, smell the crisp cool air, and really play with my babies. We’ve scoured every inch of this hotel looking for baby bunnies. We’ve discovered new birds and trees, run up and down the quiet halls, and enjoyed a quick dip in the chilly pool. We’ve watched beautiful storm clouds roll in over the mountains on the horizon, read books, and made endless Lego towers.
We’ve stayed in our pajamas well past noon and its been perfectly perfect. Claire has been trying so so hard to crawl and Tommy has loved encouraging her every second. I’m so grateful for her easy going attitude these past few weeks. Despite the fact that she’s been teething like crazy, she’s been so peaceful and I count my blessings every second. I am crazy sleep deprived as we’ve been up multiple times most nights but its been wonderful to steal some one-on-one time with her. I think Claire has been a good distraction and source of comfort for Tommy. He is an amazing big brother. He protects her little head when she falls, he wants to hold her constantly, and although his dinosaur toys are off limits, he’s happy to hand her endless Legos to chew on. I love that she is finally of the age where she can connect with him. I often hear little laughs and giggles endlessly as they stare at each other in their car seats next to each other, and if I’m lucky, I sometimes steal a glance at him holding her hand and it makes my heart skip a beat. I so cherish the sweet moments shared by these two precious little souls.
I can’t believe our second week of treatment has come to an end. The week days are long and exhausting, but I’m grateful for a little break today and some quiet time to step away and process everything. As I write, I can hear the sound of thunder as a summer rainstorm gently rolls in. Claire is fast asleep and Tommy is in the other room discussing bears with Marijane while pretending to be a zookeeper…my heart is full.
Words cannot begin to describe my appreciation for Marijane these past few weeks. She is one of the most selfless people I know. There have been many days when she has not left the hotel and has managed to support me constantly with the kids. She’s learned Claire’s different cries and rocked her patiently into a deep sleep dozens of times. She has seen me at my best and worst, and given me much needed breaks when I crumble. She’s stayed so calm under pressure while entertaining two tired, fussy kids in the back of the car while I race to get home for bedtime. I’ve learned very quickly what I can handle and when I break and she has been there to pick up the slack every single time. Although she has only had the opportunity for one very quick visit to the STAR Center, she continues to ask questions constantly to educate herself about SPD and learn more about all the dynamic issues Tommy is struggling with. My words of gratitude are not adequate. Her gift is simply, priceless.
When we arrived for treatment I knew it would be hard and I knew it would be exhausting. What I didn’t know is how much Tommy would unconsciously help me through the process. It has been so difficult to watch such a painfully delicate and slow process play out before me this past week. I’ve learned a new level of patience that I didn’t know I had in me. I’ve grabbed Tommy’s hand so tight at times, trying to hold back tears as I’ve watched him struggle so immensely with some things that most would consider so simple. I’ve had to remind myself to take baby steps…each and every day. Tommy is working so very hard. He is being challenged and pushed out of his comfort zone at times and he is using his little body to its upmost potential. We are both absolutely exhausted at the end of each day, but he continues to go through each session with a smile.
One of the first things we learned about, during our initial parent feedback with the feeding team, is the 32 steps to eating. We were given an amazing chart that shows the steps very clearly mapped out in a stair step fashion to demonstrate all the experiences a child like Tommy must go through when coming into contact with food. The first step is simply being able to be in the same room with food; while the last step is, obviously, chewing and swallowing the entire food independently. The goal is to slowly work up step-by-step with each food, putting it in Tommy’s personal space, touching it, putting it on our shoulders or head and just playing with it. The minute Tommy shows regression or any sort of stress or anxiety with a particular food as we work up the steps to eating, and it gets closer and closer to in his space, then his therapist backs off, and starts again with the next food back at step one. I don’t take a single step for granted.
Every session is the same. We start out by heading to the gym to do what they call “heavy work” to get Tommy’s body ready for food. It allows him to really prepare his body and his sense of space and helps to desensitize him to be in a more complete state. It is an incredibly, strategic hour and a half of taking baby steps and learning more and more about different foods. We all walk in, Tommy sits is a special chair which we will carry over to our home. He has a non slip pad beneath his bottom and his feet to help stabilize him while at the table. In a normal setting, due to his low muscle tone, Tommy can only physically sit at a table for a brief while before his body starts to fatigue. He will start to shift his body weight right and left, he’ll say he has to use the bathroom, he’ll change the subject, etc. all as a result of fatigue. The chair helps him to sit at a 90 degree angle at his hips, knees and feet which helps him tremendously.
Our first task is bubbles. Tommy has no idea, but what we are really doing is taking very slow, deep breaths to help calm his mental and physical state. He’s learned the slower the breath, the bigger the bubble and it works like magic. Our therapist then places some bubbles from a little bucket of soapy water she keeps nearby and he slowly rubs the table to “clean” it before we eat. This exercise increases his tactile senses and cues him that we are preparing our table for food. We all work together to move a big white towel across the table to dry it off. Tommy is using deep pressure touch as he rubs his hands across the table, again, another tactile exercise as well as desensitizing for his body. We are then each handed a small white washcloth to use as a safety mechanism if perhaps Tommy is uncomfortable with something on his hands. He often will rub crumbs off his fingers to clean them. It’s simply a reassuring tool to help him realize its ok to touch different foods of different textures and its always ok to wipe your hands or mouth clean. He uses it constantly and gets extremely uncomfortable with certain textures on his finger tips. Every single step is a baby step.
Our therapist is amazing. She is always so present and so connected with Tommy. She always has 9 foods to learn about each day. The first several foods are usually the same. They are categorized by color, texture, safety, etc. For example, the first day his food lineup looked like this: Small white marshmallows, saltine crackers, tortilla chips, chicken nuggets in the shape of dinosaurs, cheese from a can, veggie straws, carrots, green apples, dum dum lollipop, drink (usually water or juice).
They are all introduced very slowly and we explore each food for about 5-15 minutes each time. You may look at the food lineup and think these are all things that are so simple, but when you really drill down on the food there are so many different colors, textures, smells, and oral-motor activities one has to experience when dealing with each of them.
It can be an excruciatingly slow process to watch. Every minute I’m in there with him I have to constantly remind myself that my son is essentially having to retrain his brain how to eat. He has to learn that food is not scary or painful. He has to learn what it means to eat solid foods and have a full tummy…a feeling I can’t honestly say he has ever felt in his life. I can only imagine how challenging that must be for him, and I often rub his back or stroke his hair to let him know I’m right there with him.
The honeymoon phase of our therapy has ended. Two weeks have passed and we are now in the thick of beginning this journey and it will be so challenging. I am trying to remind myself that results will not happen over night. It’s a daily struggle, but I continue to to remain strong and vigilant in my faith that God and Tommy’s army of angels are guiding us through this…one baby step at a time.