This is a term frequently used by the early intervention team. And I didn't really get it.
I was asked questions like:
"So why do you want him to learn to sit on his own?"
"Why do you want him to support his head?"
"Why do you want him to smile?"
I sat through these questions - these meetings that would last over an hour - and I would zone out. Because my first response was - What the hell kind of question is that? Why wouldn't I want him to sit up, support his head, and smile every single moment of every single day? Are you wasting my time with this crap? Can't you just make it up because you're obviously guiding me to word things the way you need them to read. And before you leave, make sure you remove that red tape from the back of your shoe.
Let's just say zoning out was the pleasant way to tolerate these types of questions. I just didn't get it, I admit. And I can admit that now because I finally got it. Just as early intervention came to a close at Christian's third birthday.
Why would I want him to sit by himself? Just to do it? Just so I can say that he can do it? And then what? If he can't do anything with that ability, it's really as useful as not having the ability at all.
Why do I want him to hold his head up? He can do that. But can he do anything with is? Is he using this ability to do anything purposeful or meaningful or communicative?
How do these abilities equate to function? My understanding of the concept of functional outcomes was finally born.
I want him to hold his head up so he can see things. So he can use his vision in a functional way. A way that works for him and helps him communicate his needs. In a way he can understand the world on his terms. I want him to hold his head up because it helps him breath easier and so it's easier to put a shirt on over his head without it flopping back and forth. All of these reasons are functional outcomes and all of these functional outcomes Christian has reached or has the ability to reach soon.
I want him to sit because it would be easier for him to see and reach for his toys.
I want him to smile because it is a method of communication that shows us he is happy.
Christian has scattered abilities - head control, swallowing, reaching and grabbing. We're trying to take these abilities and connect them to a function. So they're worth something for him and useful to him. Not so they're just things he does with no function or purpose.
I think that's why I really love school for him right now. His vision teacher is working with him to use his vision in a functional way. A functional way to use his vision is for communication. And his vision and speech therapists have said that he's showing he is capable of doing this and we may be ready to consider looking into an eye gaze talker. This is a communication device that is control simply through eye gaze. In fact, the vision therapist at school was so excited about Christian's vision ability that she caught me in the parking lot to tell me she was really happy with how he was using his vision. She wants to go slowly but if Christian keeps progressing with his vision, an eye gaze talker will be an option for him.
So how I understand functional outcomes is: functional outcomes = connecting the dots. We have to find a way to connect the abilities he does have so they're useful for him.
(And sorry, early intervention/IEP interviewer. I get it. I'll tune in now.)
Speaking of functional...
Yeah, those are Crocs. With fur lining because I've always just gotta take it a step further. We live in Arizona, by the way.
But seriously, I read about this suggestion on one of the message boards I frequent for parent of kids with CP. Crocs for braces! They're wide enough, but they're light weight. So they aren't as heavy as what a friend of mine calls Frankenstein shoes, which are made to fit the braces.
I ordered them the other day the same size as his Frankenstein shoes. When they came they didn't fit with the whole brace. Christian has a two step brace so there is a little boot inside of a bigger brace that extends up to just below the knee. So when they didn't fit, I was a little pissed. But then I removed the larger brace and just went with the smaller part of the brace and it fit like a glove! It is much lighter than the Frankenstein shoes but still keeps the 90 degree angel we need and provides a flat surface for standing and positioning. So the Crocs provide a vehicle to those pesky functional outcomes in a round about way. Better yet, he can wear them without braces, too! When it does get cold in Arizona, fur-lined Crocs will keep Christian's toesies warm.
One last thing...I had to include a picture of Christian on the platform swing at school this morning. You just roll him up there, hook him up, and start swinging!
Take a look at those Frankenstein shoes!
9 comments:
It is so neat the way you created an awesome alternative to Christian's Frankenstein shoes with the fur-lined Crocs! Yay! It's interesting to read about the questions the team posed and how connecting the dots will help Christian continue to make great strides.
Hey wheres the pic?? It shows broken for me.
Thanks for continuing to read, Meredith!
Crocs? Guess I'll have to check it out - I totally know what you mean about frankestein shoes - I've never heard that term for them before! And I know what you mean about functional outcomes - it takes us moms some time to get it - we've been through a lot!
Kevin - Not sure about the picture. They show up on my computer. But sometimes it shows broken on my computer when other people can see it, but not on my laptop. So I think it has something to do with computer/security/internet settings.
Shauna, thanks so much for sharing your thoughts about functional outcomes. I think those of us who work with families are always trying to make things “family friendly” and in our efforts we might forget what the family is really feeling right then. We hope that as we are with families that we will engage them and be sensitive to their needs, but I do know that paperwork often trips us up! Thanks for your patience at all those meetings. It’s so great to hear that Christian’s vision teacher is working with his preschool team. As you know, vision drives so much learning and it truly is a team effort. I certainly miss Christian, but love seeing all his adventures here. Thanks. Susan Greer
Susan - We miss you, too! Please know that I definitely don't mean this post about EI toward any one person. It's just the paperwork and whole process that I didn't get. But now I get it! And I'm on board...two years later! :-) Thanks for continuing to read about his progress! <3
I certainly understood you were not pointing fingers. But it is a good reminder for those of us who work with families. It is a balancing act between really listening to families and having to do paperwork "just so". And thank you for sharing your life with all of us. It is a blessing! I have referred other families to this site in hopes they can feel they are not alone in their struggles, hopes and dreams! Susan Greer
I especially like the part about the red tape.......
:)
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