Take a look at this video and please think about donating to make it a reality. It is time that the world realizes that cerebral palsy isn't the end of a life. I know so many people with different levels of cerebral palsy, all who are wonderful and worth taking the time to get to know. It's time to encourage people to look beyond the labels.
The girls are sporting new hair these days, but this is a somewhat recent photo.
Yesterday I met with the therapists and principal at Darsie's school and had her annual IEP meeting. According to them and their testing, she is doing so, so well. She is hopping on her left foot very well and is starting to hop on her right as well. She is walking with alternating feet up a lot of stairs. Her writing has improved. And she can do 1" buttons! Things to work on for the summer are writing, buttons, and zippers. We can do that! Jeff and I have definitely noticed an increased use of her right hand as well.
Looking into the next year and what modifications she will need are perhaps modifications in PE as well as extra time to finish written assignments as she is a slow writer.
I love my girl and she is such a joy. She strives so much to be independent and successful at whatever she chooses.
I know I'm about a gazillion years late on tons of things but I just wanted to check in and update everyone on Darsie's latest round of Botox and serial casting. It has been very successful, which is sooooo good.
Things are progressing in the school department. For Mother's Day, the class put together a cook book of their moms' best dish. They dictated their recipe to a classroom helper and they were compiled into a book that was sent home.
Here was Darsie's:
Chinese Food
By Darsie
Chicken
Sauce
Oil
Spices
Rice
Egg Rolls
My mom makes the best Chinese food. First, she puts the chicken in the pot and then she pours the sauce on it. Oil and spicy stuff go in. She cooks it until dinnertime. Then she cooks the rice in a boiling pot. And that cook until its dinnertime. And then puts the egg rolls on and cooks them and then we eat!
I was soooo incredibly proud of her because, and honestly I know I'm biased but I truly believe this, it was the most thorough and well organized recipe out of the bunch. And she didn't choose macaroni and cheese (which we do eat plenty of).
Darsie is now sporting a purple serial cast. Her PT put it on last Friday and this week it will be removed and we'll see how she has progressed. With her other rounds of serial casting post-Botox, she has always had a minimum of two castings but upwards of four. The last time was the shortest with just two castings due to skin breakdown. This time, as a preventative measure, I applied athlete foot creme to her foot the morning of her casting. It will be interesting to see if that has any change to the duration that she can be casted for. I just want to remember to bring the creme with us on Friday to give her a quick rubdown before a new cast is applied. It is worth the shot at least.
She just had two weeks off of school due to conferences and Spring break. Her conference went well but there still seems to be a disconnect at school as to what she is actually capable of and what she is given credit for knowing. I know that Jeff and I have seen astounding progress and we were hoping to hear about that progress and what we hears was that she is not at the level that they like kids to be at at this point in the year. I won't go in to it too much here because I'm not sure who reads this blog and while I'm feeling disgruntled about her school experience, she loves school, she is progressing, and she is happy. To me at least, that is what matters.
An update to the recent placard post I wrote is that I talked about it with Darsie and she is VERY opposed to it for some reason. I don't know if she has been hearing things at school (she said to Bert one day in a very loving tone "You're disabled, you are disabled") or what is happening, but she does not want one. I think at this point in her young life all she wants is to fit in and be similar. I know right now she is really struggling with being pulled out of class for OT and PT (she actually yelled at the OT one day because the class was going to have cupcakes for St. Paddies Day and she thought she was going to miss them) and she doesn't want to seem so different.
Darsie also went on a play date/party date to a friend's house and it was a success. We are working on setting up some more soon.
Darsie also had a fourth round of Botox last week. I'm not sure if we will follow it up with the serial casting that we have done in the past, but I wouldn't be surprised. She responds really well to that combo. I do recommend that for anybody contemplating Botox, talk to your doctor about giving your child Versed before the IV and the Propanol. At least it is a combo that works well with Darsie.
We are on Spring Break for the next two weeks and of course Darsie is sick. So, today is a Mac-n-Cheese/couch/movie sort of day. Hopefully brighter weather and moods is just around the bend.
First off, I wanted to thank everyone for your thoughts and recommendations on my last post about Darsie and making friends. We've made some great strides in the last week and hopefully it will continue.
I have a topic I've been thinking about for awhile and am hoping to get other parents/people to contribute on - handicap parking placards.
Darsie is very able. But walking does wear her out more so than typical people. And she walks slowly. According to the Washington State web site on the matter, I do believe that she would qualify - Your ability to walk is severely limited due to an arthritic, neurological, or orthopedic condition.
I know that it would make our lives so much easier. But then I get to thinking, would it make Darsie's life easier or just mine? I'm thinking of shorter jaunts across parking lots with the three kids and being closer to our destinations. I think about all the people that use placards that don't "appear" to need one (although, as with Darsie, not all conditions are visible). I know that she doesn't really need one and so for the time being, we've held off on applying for one.
And as I say that, I know that if and when it would really benefit her, we'll be the first ones in line for a placard.
I love that the internet brings together people of all experiences, lives, and circumstances into one big mosh pit of vegetable soup. And boy, oh, boy, do I need that mosh pit right now.
This is going to sound corny and cheesy and odd, but I want to help Darsie make some friends. She has her casual acquaintances but no girlfriends to come over and play, no consistent friends besides her sister and brother.
I also am noticing that kids are starting to realize that Darsie is different. And not that they are mean or tease her, but she is starting to get excluded. I volunteer in Darsie's class every Wednesday and the little girls in the class were all abuzz over an upcoming birthday party for this weekend with A Princess for a Day theme. It seems the majority of the girls in the class were invited, but not Darsie. It appears that Darsie doesn't realize it, but who knows.
I've also been witnessing a lot of little girl cruelty. They are all about clubs and best friends. Luckily, they are also fickle and change best friends (and boy friends!) on a seemingly weekly basis. I did overhear a girl telling the girl that Darsie is friends with, that if she was friends with Darsie, that she wouldn't be friends with her anymore. Where do they get this behavior? Their parents? Their siblings?
Beyond setting up a play date with the little girl that Darsie levitates to in class, how would you go about facilitating positive friendships for a young girl?
Darsie loves kindergarten. She goes to our local public school and it is a great place. The principal is fantastic, the kids seem happy. But I have a big problem with it which I didn't see as a problem early on. It is a three hour program. And in a class with upwards of 18 kids, three hours a day isn't a lot of time to learn the basics.
Since the start, we've been given updates on Darsie's progress and it has always been dismal. We were told she didn't know numbers, she didn't know letters, she didn't know sounds.
At home, she does know these things. And I made sure going into kindergarten, that she was prepared. I read the kindergarten brochure and the things they said kids needed to know going into kindergarten, she was on top of. Besides tying her shoes.
Recently, Darsie joined an extended kindergarten program. She goes an extra hour every day just for a reading class. They use a zoo-phonics program to teach them the sounds of the letters. And I've actually noticed that it has given Darsie a lot more confidence.
But she is having problems connecting those sounds and also sounding out words. I would imagine that a phonics program of some nature would help this, but I'm not a teacher. Just a mama that wants the best for her girl.
We've upped our reading time here at home and we spend time perusing Starfall.com every day to work on phonics.
I don't know if it that her kindergarten time is so limited and the teacher so maxed out, if it because of Darsie's brain bleed (it was in the language part of her brain), or if it is just a timing thing.
I just hate to see her frustrated and I know, to my core, that once she can read, she will be the over-the-moon reader who never puts books down.
I want to open that world up for her. So, if anybody has any advice, I'd love to hear it.
Egads, life gets crazy and the blog gets super dusty. But, I figure I can update at least every six months or so, I hope!
Anyways.....Darsie started kindergarten and has been doing fairly well. She does great with math and patterns but reading has been more of a problem than I anticipated. The school finally started an extended kindergarten program which gives her an extra hour with a different teacher and only nine other students (the extra hour means that she has 4 hours instead of 3). They use a zoo phonics program and since Darsie LOVES animals, it has really clicked with her. She has made tons of progress.
In July, she had a round of Botox which has been hugely successful. We're in the process of getting another round scheduled for her though as her foot is starting to turn in and under again. It is such a bummer that it doesn't last longer but I am SO THRILLED with the six plus months that we got from the last round.
The other kids are doing great as well. Elise is in preschool and thriving. She loves lady bugs and princesses. Bert is now 15 months old and walking up a storm. He loves destroying things and terrorizing his sisters and ME! We are a traveling circus.
