I figure it’s been 3 month so I would provide an update on Ren. Overall she is still doing well. She is working hard at school, reading books with me at home, walking well with her walker, and as happy as can be. As has been for quite some time, my greatest concerns are with her speech and her seizures. Though I know she is making progress with her speech – even starting to answer questions and initiate communication with actual words (today I was on the couch, and she said, “Move!” and at supper she said “Butter!” and I asked what she wanted the butter for, and she said, “Toast!”) – and I am happy about that, it still worries me knowing how so behind she is in her speaking.
Recently a relative of mine inquired about her schooling, and I explained she is at school half days through the 4k program. She replied with, The regular 4k program? And though I did not take offense to that at all, it again reminded me of how developmentally delayed she appears. I say appears because despite her having obvious delays – with her speech especially and therefore her interactions, and her physical delays of course – I just know she knows more that she can show. Anyone who knows her and has worked with her would most likely agree with me. I think she is a relatively smart little girl, but she just is not able to demonstrate that. Language is such a huge barrier for her. And, yes, I do think there are general developmental delays as well, but I guess I see those as ones she will grow out of, per se. Another one of our children could not count to five when he was five years old, and now he is eight and amazes me with his mathematical reasoning skills. He was always our….later developer. He took longer, but always caught up. Ren (who is still four) has been counting to ten way before he was able to, and she can’t talk! (Well, you know what I mean – limited verbal communication). I take hope in those skills I do see her doing — she’s been saying her ABCs for quite awhile now, she has been able to memorize some addition facts and some simple repetition books, she can spell her name and my name, she can do 24 piece puzzles independently – and though I know that there are tons of kids out there her same age that can do tons more things than those simple skills, I also know that when I think about the barriers she has – her language and her mobility – I think that she is doing okay.
There are lots of words she can say with prompting (As I’m typing this, she says, “I want out” of her booster chair), including two syllable words, as well as lots of sounds and words she cannot – but her biggest challenge seems to be retrieving the word she wants to say. She will often go, “I want…” and then has this look on her face like she can’t quite figure out the word she wants. When I offer a few choices of words, she will say the one she meant. But why she couldn’t do that without a prompt….is the question. There just seems to be something in the way….something keeping her from saying what she wants to say on her own. On the other hand, she is one stubborn little girl too. I have had two standoffs with her about saying “bye” to people. Both incidents ended with her in her room, and though I thought I had won, she still will not voluntarily say “bye” to people she knows, even though she can say that word.
So she is plugging away at her speech, with lots of help from the variety of teachers and other staff that work with her. My other concern, though, is her seizures. She has had an increase in her medication due to continued seizures. They are relatively minor still, lasting 1-2 minutes and she remains conscience throughout, but they are still seizures that technically should be controlled by her meds. Despite the increase in medication, she has had a couple more seizures. We are awaiting word from her doctor to see if there are any other steps to be tried or not. In the meantime, I did some more researching and found there are plenty of studies that say taking Vitamin E can help decrease seizures, partly due to the fact that many seizure medications deplete the body’s Vitamin E, and partly due to something with it providing a protective coating on the brain….or something like that. So, I have just started giving her that, as well as fish oil (which has also helped speech apraxia in some children). I know I cannot count on these to “cure” her problems, but I am going to try almost anything that may help her.
Again, as I said before, overall she really is doing well. She is still a very, very happy girl with a huge sense of humor, and can be oh so fun. Below is a video of her in her walker, being chased by her dad, so you can see some of her progress with walking…and her fun personality. I have also added a video of her reading one of her books. At the end, she says “bye!” proving she can do it! Enjoy!