So every spare minute that I've had the last month or so has been spent on working on an application for some medical assistance with Andrew. I've written novels about his medical history, gotten medical records from all of his doctors (That's 8 specialists in the last 3 states that's we've lived in....that's a lot of medical record requests!) I am so grateful this kid is only four years old because already, his application has been a beast to fill out. Which apparently is one way they weed people out of applying, but after watching the three hour you tube video on how to apply, I'm feeling much more confident and much more overwhelmed. [sigh]
Anyways, I was doing this write up this week on a day in the life of Andrew and thought I should put it here on our blog too. It gives a good realistic look into his life and all that he deals with and how much assistance this kid needs. As I dig through these records, I'm also reminded at the journey we've had the last four years, where he's been and all the mountains he's had to climb to overcome and defy all the expectations the doctors in the NICU set on him. It makes me pretty humbled and incredibly grateful to be his mom and have him in our family. Love this little boy of mine! His spark, his sweet personality, his thought provoking questions, his determination, his giggles, his little voice who asks when I get him off the bus at the end of the day. "Mommy are you excited to see me? Did you miss me today?" He melts my heart and tries my patience all in the same moment. Love this little four year old.
Here's a typical day for him.
The Night Before
Like many children, Andrew thrives on predictability and routine. His bedtime ritual is simple: Around 7:00 P.M., We begin the process. We help him by holding his hand as we walk up the stairs to his bedroom together. We start by changing his diaper, then having him try to go potty on the toilet. We have to help him with every step. (Walking into the bathroom, pulling his pants down as he holds onto the medical toilet safety railings, stepping up onto the step stool, turning on the faucet to wash his hands, and stepping down to dry his hands.) After he’s tried to go potty, we assist him in getting his pajamas on (getting dressed/undressed independently is a skill he has not mastered)But each night we work on the skills of taking his clothes off and putting his pajamas on. Then we help him with brushing his teeth, getting a small drink and climbing into his bed. We put on Andrew’s night splints on his legs, read a book and then let him fall asleep. Sometimes this process of getting ready for bed can take 15-20 minutes or sometimes it can take almost 45-60 minutes. Andrew desperately wants to be independent at so many things. He tries so hard to complete tasks like taking his shirt off and pulling his pants up, brushing his teeth, etc. But he still needs a lot help with all of these self-care skills, and most of the time, the end results are frustration and meltdowns.
The Morning Rush Before School Starts
Mornings are a delicate dance, and every minute counts in getting out the door on time. I handle the mornings solo – I wake Andrew and put on his favorite show, “Curious George”. I find that having this distraction is helpful in going through our morning routine as he’s still waking up and because he needs assistance with dressing, combing his hair, and putting on his socks, braces and shoes. The morning is often dictated by his moods, so I find it easier to help him through the routine and then work on independent skills after school. After we are finished, we head downstairs holding hands to help with his walking down the stairs to get breakfast. He helps me get his spoon and turn on the lights, as I get his breakfast cereal. Again though, lifting him into his chair and buckling him in before he starts eating. Following breakfast we work on his quick homework of tracing or counting objects. I find it easier to do in the morning, when he’s fresh and excited to work. Our after school time is scheduled and busy, so this works best for our family. Usually though, I can expect one or more morning outbursts, but I can't blame him. He's sleepy and I'm marching him through an early routine. Yet almost every time we walk to the bus, his mood lightens and he excitedly runs down our driveway because he loves going to school.
The School Day Begins
Andrew is very fortunate to be a part of a wonderful team of experts who help him during the day. He goes to school each day of the week for 6 ½ hours of school time plus 45 minutes each morning and afternoon on the bus. He is apart of a special needs preschool class. In addition to the basic IEP team of parents, teachers, principal, and occupational/physical/speech therapists. Andrew also has an aide in his classroom as well as an orthopedic Impairment teacher, who makes sure Andrew is able to get around, function in his classroom environment and access the curriculum along with his same age peers. She has helped make adaptations in the bathroom, lunchroom and his classroom chair. Andrew also receives daily care from the school nurse, who administers his medication and does a daily assessment while he is in the care of the school. We send Andrew to school each day with his reverse walker. Here he uses it when going long distances (i.e. to the lunchroom, recess or library etc.) Because of his balance issues, his walker is mostly a visual cue to the other students and a protection for him from the other kids. In the classroom and on the playground Andrew walks independently (with a helmet outside) from activity to activity and can navigate around independently. Although he still falls often, he is in a more protected environment in his small sized classroom.
The Arrival Home After School
When the bus arrives in front of our house, I meet Andrew at the bus door and most days we hop right into the car to head to therapy. He’s happy to go once we are in the car and buckled, but it takes a lot of convincing to get in the car and go. He loves playing outside especially with his walker and just being a kid. After I’ve lifted him into his car seat and buckled him up, those tasks are too difficult to do himself. I hand him a little afterschool snack to eat on the way. We head out dragging his two sisters along with us. Andrew sees three different therapist each week. Tuesday’s are occupational therapy, Wednesday’s are physical therapy and Thursday’s are hippo therapy.
The two days we have “off from therapy” are a nice break from having to manage three kids out of the house. But we try to keep a routine at home and still work on our therapy skills. I usually give Andrew a little bit to unwind and relax after being at school all day. When he gets home, his sisters are usually taking a nap and I can spend some one on one time with him. We talk about his day, read a book or play one of his many imaginative games. After we’ve played for a bit, I pull out my bag of exercises where he pulls 3-4 slips of paper out and we work on three or 4 exercises for the day, plus his daily stretches of his back, hips, hamstrings, calf muscles and his toes.
By this time his sisters are awake and he’s able to play with them. During our after school time we are also working on potty training. Once again this kid tries so much to want to be independent.
Andrew is ambulatory around our house and gets around pretty good. He has to crawl or be carried up the stairs, but he can climb on and off of the couch, his bed (with a step stool) and open and close doors. He still is very unbalanced and still falls a lot. Thankfully now he has learned some protective falling skills and can catch himself with his hands. He’s a pretty good sport about the whole thing and a lot of times just starts laughing at himself. “Did you see that mommy? I’m so silly” are usually the words I hear. But it breaks my heart each time I see him fall.
The Family Time Around the Dinner Table
By 5:00 every night, Andrew is searching around in the pantry for food and asking what’s for dinner, and trying to see what's cooking. The evening meal is an important time when we come together as a family and share our day. Andrew is always willing to try new foods, but he’s struggles with endurance and finishing the food on his plate. Because of this getting enough calories in his day is a constant battle. He is on a high calorie diet because his jaw muscles get tired easily (chewing is a lot of work for him) especially when chewing tough things like meats. He is able to use a spoon and an open cup, but meal times are still a very messy time for him. We have a lot of spills with the spoon and usually after he's tired of working so hard eating with a spoon, he just dives in and uses his hands to self-feed. Most nights he needs a bath after eating dinner. Mealtime can also be a struggle for Andrew. He's working so hard at those fine motor tasks and trying to sit in a chair that he loses interest very quickly and throws his plate and cup on the floor when he’s finished, whether his food is gone or not.
The Post-Dinner Relaxation Before Bedtime
If we're lucky, there are usually 30 minutes to an hour for us to relax and play before bedtime. This time can get taken up by bathing. Up the stairs we head again hand in hand, working on undressing and lifting Andrew in/out of the tub. He loves baths and could spend hours in the tub. Usually, though, this is a time when he and his sisters play with dad. They wrestle on the ground, snuggle on the couch or read books. This is a time with little or no demands on Andrew. Each night after dinner is our family time. This is a time when we all unwind from the day’s pressures, connect with each other, and laugh to our hearts content, before the next day begins and we start the process all over again.
