This morning, Olivia & I packed up Annie and went to an Augmentative Communication Evaluation down at Children's. Marci gave us some good ideas to help get us out of the rut of doing all the initiating in communicating with Annie, and her being a passive recipient. She taught us how to wait until Annie looks at us before we talk, and wait until she reaches to turn the page of a book, before we help her turn it. She also recommended a device called "Go-talk" to help her make choices, such as what book to read. We also looked at a touch-screen computer game that I think would be very motivating for her.
It's interesting how in the first year after her brain injury, I decided to "narrarate" the day in an effort to drag her out of her fog, but now, my constant chit-chat actually de-motivates her from initiating any communication. In other words, I have made a habit of spoon-feeding her information, and now I have to retrain myself in order to retrain her!!
Marci noted that Annie has "yes" and "no" down pretty good, but needs practice in using those words immediately, accurately and appropriately. When she does, then I can add in more complicated questions such as, "Do you want to go to get a bath, read a story, or go to bed?" Then repeat, "Do you want to get a bath?" (yes, no), "...read a story?" (yes, no), "...or go to bed?" (yes, no). That way, we can eventually make her communication more sophisticated and purposeful.
I really appreciate Miss Claudia, Annie's regular speech therapist, who also came to the evaluation, so that we can work together every week to help put these things into practice. It seems that for the last few months, Annie's progress has been hindered by her seizures, and maybe now, if she is moving into a more "up" trajectory, we can actually implement some of these ideas. Unfortunately, she did have one seizure right before the evaluation, and then another in the middle of it. She's had four today total, so that's a bit disconcerting.
She actually only had 2 full days of no seizures this past week, and has been having one or two a day--and again, I really don't know what is causing them. But we go up again on the Banzel tonight, and down on the Zonisimide tonight, so we'll see. These seizures are a huge barrier to her progress, though, so I do wish God would simply heal her of them. And I'll keep asking Him to.
Sometimes I wish I had speech, OT, & PT therapists who lived in my house. Annie just has so many deficits--using her hands purposefully, walking, eating, talking, blah, blah, blah--it is overwhelming for me... When she is in a medical valley and all I do is manage her 15 medicines, and keep track of her seizures, it's almost easier. But when she starts going up, I am overwhelmed at the enormity of helping her relearn to walk, (or simply scoot!), talk, eat, and use her hands. Oh, and I forgot to mention--her teeth. I need an inhouse dentist to brush her teeth every morning, because again, I'm just not getting the job done. And I have to say it again--it's even more frustrating because I KNOW God can heal her.
Jean
Have mercy on me, O Lord, for I am weak; O Lord, heal me, for my bones are troubled; my soul also is greatly troubled; But You, O Lord, how long? Psalm 6:2-3
6 comments:
Great news on the aug comm front, Jean, and it does make sense. There's a point to where language stim can be overwhelming--yet I know it's important, too. Nice that you have some tools for balancing the speaking and listening and facilitating Annie's responses. Great that you have the continuity of care with Claudia, too.
I'm really feeling for you on the level of frustration which must be so very daily for you. I have to tell myself that he can take it and forgives me when I'm mad at him for not healing her body in my time frame. We are do-ers by nature, and it's hard to turn into a be-er. I'll continue to pray, too. For Him to heal her and to see you through the details of each day.
Father God, please heal Your Annie of any and all seizures forever
right this minute. You know our desire is for You to heal her wholly and completely now; but if that is not Your will on this earth, then please take her seizures away so that she can learn and grow and heal into all that she can be for You without so many set backs and complications. Thank you for guiding her parents and family. Continue to give them strength and endurance and to keep their faith solid. Thank you for such a marvelous support group. We seek to bring honor and glory to Your name. Your will be done. Amen
Continuing love and prayers,
Terri W
I just got how intense caring for Annie is from this post. It's amazing how the little, little things we take for granted are monumental moments to you all.I hope you are somehow taking time to care for yourself. Praying.
Love,
Susan
Thanks for your encouragement, Gretchen, Terri & Susan--I feel your prayers. :)
I need to suck it up and be okay with everything not being perfect, "as it used to be", or even progressing. I need to be content with the good of each day--and LOOK for the good of each day.
Today she threw up 3 times and had about 3 seizures. But in speech therapy, she raised her arms up to me when she wanted to be picked up, and Miss Claudia said she heard "Mama". I sort of heard that, but I don't trust my own ears! You know how it is, that when your young child first says something, he has to say it for four weeks before you finally "hear" it.
You know how it is, that when your young child first says something, he has to say it for four weeks before you finally "hear" it...
That must be why we must PUSH - Pray Until Something Happens. Or, more scripturally - 'pray without ceasing'.
Not that our Father didn't 'hear' us right the first time... but more like maybe we weren't sure what we were SAYING the first time.
On the teeth topic - have you thought of getting an automatic toothbrush? I think that if Annie could handle the noise and vibration, it might be a huge help to you.
Love
My son is a diffnt kid obviously, but he has a hard time with the stim of an elec. toothbrsh. Still, might be worth a graded usage. Also, the toothettes that we use in a hospital are disposable, and I'm sure you could order some. Might be a thought, anyway.
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