This summer, I have been a nanny for a wonderful special needs child. And it has, without a doubt, changed my life. She brings so much joy, love, and happiness to everyone she meets. But, you may not see that at first. Usually, when we go out in public, whether it's to the pool or the park, other people look at us. Some have sorrow in their eyes, others feel "bad" for us, and a few people stare because they wonder how we manage this situation.
For those who have been wondering how we manage the situation, take a look at a typical day to day schedule of caring for a child with Trisomy 4p. (This means that she has three duplications of the fourth chromosome, instead of the normal two). She is four years old, and unable to walk, talk, or eat on her own. However, this hasn't stopped her in the slightest bit!
Our schedule resembles the typical one of "normal" children, with just a few add-ins. Everyday is different, but we always make sure to have fun.
8:30am: Wake up! She is usually crawling in her crib and sticking her hands and feet out of the crib gaps. I open the curtains and turn off the sound machine.
8:35am: Get Ready! I unhook her from the feeding pole (this gives her nutrients and calories throughout the night), take her out of her crib, and give her a biiiigg kiss on the cheek. Next, I administer her medicine through the tube, and change her diaper. I dress her, and then we are off to play!
9:00am: Play Time! She loves to play with toys that make sound and light up. They could keep her occupied for hours! She also loves to lay on the trampoline in the playroom while her sister bounces her.
10:00am: Breakfast! First, we start with puree food. Some mornings she will eat it, some mornings she won't (progress not perfection). Then, we move onto her straw cup where she drinks thickened liquids. Depending on how much food she eats, I then administer everything else through her g-tube. This is connected to a hole in her stomach, where her food goes.
10:45am: More Play Time! We love to go on walks and spend time outside on the swing!
12:00pm: Stander Time! To work on standing up on her own, she uses a stander that helps straighten her legs. I usually turn on Peppa Pig (my fav!) and we watch for a little while.
2:00pm: Lunch Time! (same routine as breakfast!)
3:00pm: Get ready for nap time! We read a book or two, sing some songs, and she usually falls right asleep!
4:30pm: Wake up and more play time!
7:00pm: Dinner Time! Same routine, and we may try some more solid foods that melt in her mouth.
8:00pm: Bath and Bed Time! (Read books, sing songs etc.)
8:30pm: Bed Time!
If any of you want to work with children as a teacher, doctor, or speech-language pathologist (like me!), these are some of the amazing things you can do everyday by caring for a child with special needs.