Monday, June 23, 2014

A big girl: The importance of age-appropriateness

Lucy isn't a baby anymore. She is a big four year old girl. I imagine that since her physical abilities have not progressed much past that of about an 18 month old, it is easy for others to categorize her as a baby. Literally, the last motor milestone that Lucy reached was learning to stay in sitting when she was about 7 months old, and even now that is not always as consistent as it once was. And, as a big four year old girl, Lucy has developed very reliable yes and no movements with her head. She uses these movements every day to answer questions. In addition, of course, to using her PODD and Tobii to makes statements, ask questions, etc. 

We don't read baby books to Lucy anymore. We read books for kids her age, and point to the words in the leveled readers to help her start to learn to read. I have been reading beginning chapter books to her for months.  Lucy doesn't play with baby toys anymore either. Admittedly, it is a mind-boggling task to figure out ways for her to play and toys she will enjoy, but we don't just fall back on baby toys because those are what she can (sometimes) physically manipulate. The other day we played Hi Ho Cherrio with an iPad app that has the spinner for that game and all she had to do was touch the screen to "spin" it. We play Mr. Potato Head using her Tobii, and baby dolls using her Tobii or PODD book. She loves to fingerpaint and color. She recently fell in love with My Little Ponies. We do a lot of things, but I strive always for those things to be age-appropriate. Even though Lucy's body doesn't let her do the things other four year olds do, we need to ALWAYS, ALWAYS remember that her mind is just like any other four year old's. She knows she isn't a baby, and she knows when people are treating her like one. 

Which leads me to a revelation I recently had that I'd like to share. A way in which I have been treating her like a baby and allowing everyone else to treat her like a baby is by just passing her around, to be "held", without hardly ever consulting her! How could I? That is what you do with a baby. Now, keep in mind, Lucy is a total cuddler, but she might not always want to cuddle. She might want to sit by herself. We do ask her sometimes, but not enough. And the thing about being four is that any other mobile, verbal four year old would just be able to squirm away and escape, and say they don't want to sit with anyone right now. Lucy should have that same choice. As I said, she has a concrete, and consistent way to say yes or no to sitting with someone, and she has the right to say so. 

And here are most of Lucy's chairs that she uses throughout the day which also includes the big chaise behind her.  I do often ask her where she wants to sit when it comes to these, but I could still ask more often. None of them are perfect for her, they each have good and bad qualities and it is important to have her in different positions throughout the day to try and keep her spine straight, so I think I take over the choice making in this area a little too much sometimes because of the spinal concerns, which is justified I think, but I could let her choose more. In addition to these there is of course her wheelchair.  We will have a ramp sometime within the next month going into the house so that then her wheelchair will be in here too as an option.  Most often when we are out and about Lu uses her wheelchair, but sometimes it might seem like it's going to be "easier" to just carry her, so we do. But...maybe she doesn't want to be carried.  Perhaps she feels more dignified when she can travel in her own chair, while looking like a big girl. 

I think overall Chad and I treat Lucy like she is four, just this area of where she sits, and with who, and when needs to be readjusted.  As usual, we are responsible for changing the way others think about Lu.  I think most people in our life have come to understand and believe that she is not cognitively impaired and that she is smart and understands as much as any other child her age.  I just want to implore everyone who knows Lucy or any other child with significant physical limitations, to not let what their bodies CAN'T do mold your ideas about what their brains, and hearts CAN do. 

This is Baby Lucy...

And this is Big Girl Lucy. Let's not confuse the two. 

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