The plateau
When Mia first started therapy after her accident, her therapists told us that she would make progress, then regress a bit, then progress again, then either reach a plateau or regress a little. They told us that this is pretty common among patients with brain injuries, and we should prepare ourselves.
One thing that is difficult with Mia is accepting this idea. Mia has made a lot of progress in the two-and-a-half years since her injury, and we're very happy that she has come so far, but recently she's reached one of those plateaus. It's been a while since she hit one, so this one is bothering us.
It's been a frustrating couple of weeks here, because we know she knows how to do a lot of the things she is not doing right now. This particular wall, I think, has to do with her chair. She had a chair that was fitted for her, and that worked okay for a while, but it had no pommel between her legs, and eventually she began sliding down the seat, which was covered with vinyl and was therefore slippery. She also began to outgrow the seat, so it was becoming uncomfortable for her. As she was sliding forward, she was slumping drastically, so we decided to try something different. We had a regular kids' seat with a cloth seat, which would not allow her to slide forward, but it was significantly wider than the other seat and - most important - it has no support for her feet. A foot support allows Mia to sit up much better. But we thought she had come far enough to sit by herself.
Well, she's been using this seat, strapped to a kitchen chair, for a few months, and it seemed to be fine. She had a tough time sitting in it, but she was able to pull herself up and sit decently. In the past few weeks, however, she has been sitting in it more poorly. She is slumping very badly to the left, the side to which she always slumps. It's worse, however, recently. She's also leaning to the right and forward more, and although it's not that bad, it's tough for her to keep herself upright. This has led to her feeding herself less, because she's spending so much time trying to stay upright.
I believe that her problems with her chair have led her to become a bit more lazy in other aspects of her therapy. She's doing well enough with her gross motor skills - she is walking in her gait trainer okay, and when her PT makes her walk on her own (with his and my help) she does okay. Her fine motor skills, though, have deteriorated a bit. She used to be able to eat things held in her left hand - not well, of course, but she could still raise her hand to her mouth, at least - but that has fallen off. Her left arm is much stiffer than it has been - she keeps it straight far too much, and it seems that it's a consequence of trying to balance in her chair. As a result of keeping her left arm straight, she can't raise it to her mouth anymore. Whenever I put food in it, she simply brings her arm across her body instead of raising it to her mouth. So that's something to work on.
Her language skills are improving, but very slowly. She's still understanding things fine, but she is still having problems retaining new words. I'm not quite sure why.
Part of the problem is, as I'm sure I've mentioned before (but can't be bothered to find it and reference it), is that her innate memory has been damaged. It takes her a very long time to internalize things, and even after we think she's done it, things can fall out. So there are some things we haven't worked on in a while after working on it incessantly until we thought she had it, but when we return to it, she has forgotten how. This is most evident in words that she used to use, but it also comes up in certain movements. We worked on them until she was able to do them rather successfully, and then we moved on to something else. The problem is, you can't assume she will retain what she's learned. So we're trying to return to things sooner and more frequently so that she doesn't lose them. Her speech therapist told us that kids with brain injuries need to move around in their sounds often, so that they don't get bored with the particular sound they're practicing, but also so they don't forget the ones they've already learned. Mia becomes focused on the current sound, to the exclusion of the others that she already "knows." So then we have to re-teach her things she learned a few months earlier.
A lot of this, I assume, is what any parent goes through - kids are notoriously single-minded until they find the next bright, shiny object, and then they forget about whatever had captured their attention moments before. Mia's attention span has been slipping, too, which makes it harder to teach her stuff. She used to sit with Krys and read books happily, but now, after two or three pages, she's "all done" (she does the sign for it repeatedly). She also looks around constantly and points at every little thing and asks what is it, even if Krys just told her seconds before. She's the same way while eating - I give her a spoonful of food, even something she likes, and she immediately signs "all done." I wait for her to do it, then give her some more. It's not that she won't eat it - she just has to sign in between mouthfuls. The annoying thing about that is that the sign loses all meaning - we can't allow her to be all done every time she signs it, and we aren't sure when she actually means it. Annoying.
We got some encouraging news from another parent this weekend, however. Krys was at the mall with Mia and a nurse at Phoenix Children's Hospital was talking to her. She told Krys that her daughter had a brain bleed when she was born, and she was similar to Mia when she was Mia's age. She's now 16 and in fine health and on the swim team at school. We know that so much of Mia's prognosis is cloudy and so much of her recovery is really up to her, so it was nice to hear about a story that sounded like it began similarly end up well. The problem with being a parent of a kid like this is that we see the daily grind and aren't able to get the whole picture. I'm sure that when my sister arrives next week she'll be amazed at how well Mia is doing (she hasn't seen her since before her accident). Whenever my mom visits she says the same thing. If you don't see Mia for a few months, her progress probably looks very nice. But for us, it's harder to see. That's why we're in this for the long haul!
One thing that is difficult with Mia is accepting this idea. Mia has made a lot of progress in the two-and-a-half years since her injury, and we're very happy that she has come so far, but recently she's reached one of those plateaus. It's been a while since she hit one, so this one is bothering us.
It's been a frustrating couple of weeks here, because we know she knows how to do a lot of the things she is not doing right now. This particular wall, I think, has to do with her chair. She had a chair that was fitted for her, and that worked okay for a while, but it had no pommel between her legs, and eventually she began sliding down the seat, which was covered with vinyl and was therefore slippery. She also began to outgrow the seat, so it was becoming uncomfortable for her. As she was sliding forward, she was slumping drastically, so we decided to try something different. We had a regular kids' seat with a cloth seat, which would not allow her to slide forward, but it was significantly wider than the other seat and - most important - it has no support for her feet. A foot support allows Mia to sit up much better. But we thought she had come far enough to sit by herself.
Well, she's been using this seat, strapped to a kitchen chair, for a few months, and it seemed to be fine. She had a tough time sitting in it, but she was able to pull herself up and sit decently. In the past few weeks, however, she has been sitting in it more poorly. She is slumping very badly to the left, the side to which she always slumps. It's worse, however, recently. She's also leaning to the right and forward more, and although it's not that bad, it's tough for her to keep herself upright. This has led to her feeding herself less, because she's spending so much time trying to stay upright.
I believe that her problems with her chair have led her to become a bit more lazy in other aspects of her therapy. She's doing well enough with her gross motor skills - she is walking in her gait trainer okay, and when her PT makes her walk on her own (with his and my help) she does okay. Her fine motor skills, though, have deteriorated a bit. She used to be able to eat things held in her left hand - not well, of course, but she could still raise her hand to her mouth, at least - but that has fallen off. Her left arm is much stiffer than it has been - she keeps it straight far too much, and it seems that it's a consequence of trying to balance in her chair. As a result of keeping her left arm straight, she can't raise it to her mouth anymore. Whenever I put food in it, she simply brings her arm across her body instead of raising it to her mouth. So that's something to work on.
Her language skills are improving, but very slowly. She's still understanding things fine, but she is still having problems retaining new words. I'm not quite sure why.
Part of the problem is, as I'm sure I've mentioned before (but can't be bothered to find it and reference it), is that her innate memory has been damaged. It takes her a very long time to internalize things, and even after we think she's done it, things can fall out. So there are some things we haven't worked on in a while after working on it incessantly until we thought she had it, but when we return to it, she has forgotten how. This is most evident in words that she used to use, but it also comes up in certain movements. We worked on them until she was able to do them rather successfully, and then we moved on to something else. The problem is, you can't assume she will retain what she's learned. So we're trying to return to things sooner and more frequently so that she doesn't lose them. Her speech therapist told us that kids with brain injuries need to move around in their sounds often, so that they don't get bored with the particular sound they're practicing, but also so they don't forget the ones they've already learned. Mia becomes focused on the current sound, to the exclusion of the others that she already "knows." So then we have to re-teach her things she learned a few months earlier.
A lot of this, I assume, is what any parent goes through - kids are notoriously single-minded until they find the next bright, shiny object, and then they forget about whatever had captured their attention moments before. Mia's attention span has been slipping, too, which makes it harder to teach her stuff. She used to sit with Krys and read books happily, but now, after two or three pages, she's "all done" (she does the sign for it repeatedly). She also looks around constantly and points at every little thing and asks what is it, even if Krys just told her seconds before. She's the same way while eating - I give her a spoonful of food, even something she likes, and she immediately signs "all done." I wait for her to do it, then give her some more. It's not that she won't eat it - she just has to sign in between mouthfuls. The annoying thing about that is that the sign loses all meaning - we can't allow her to be all done every time she signs it, and we aren't sure when she actually means it. Annoying.
We got some encouraging news from another parent this weekend, however. Krys was at the mall with Mia and a nurse at Phoenix Children's Hospital was talking to her. She told Krys that her daughter had a brain bleed when she was born, and she was similar to Mia when she was Mia's age. She's now 16 and in fine health and on the swim team at school. We know that so much of Mia's prognosis is cloudy and so much of her recovery is really up to her, so it was nice to hear about a story that sounded like it began similarly end up well. The problem with being a parent of a kid like this is that we see the daily grind and aren't able to get the whole picture. I'm sure that when my sister arrives next week she'll be amazed at how well Mia is doing (she hasn't seen her since before her accident). Whenever my mom visits she says the same thing. If you don't see Mia for a few months, her progress probably looks very nice. But for us, it's harder to see. That's why we're in this for the long haul!
posted by Greg at
10:06 AM
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