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.