Wednesday, October 28, 2009

And now for an update!

Last week was Payton's cardiologist appointment. Bob and I were so anxious to get her in there, concerned about her blood pressure issues, but all turned out very well. The doctor told us this is just part of the monster of williams syndrome and not to ever really expect to get it regulated. Her heart looked really strong (which made us relax instantly!) and basically just said due to the narrowing of vessels in her body, she'll have the bp issues. Right now we're doing the three medications and taking them every 2-3 hours. I am so happy to say that I have not gotten a call from the nurse in over a week (and in the past it was on nearly a daily basis). So, it feels less stressful.

We've since had her IEP meeting. I really can't say enough good things about Payton's special ed teacher and her therapists (and her regular teacher as well!). They work so well with her and in the same breath, care enough for her to get her the best education possible. Their biggest concern with her is upper body strength and fine motor skills. Which I guess is typical of most children with williams syndrome. Her teacher said it just stares them right in the face that she needs to have a ton of OT. They're also concerned with her visual-spatial deficit, but if I understand correctly 'doctor' wise, there's not anything that can correct it. We're just working with her to try and overcome some of it. They have laminated some papers for her to be able to trace over her name (she can write letters, but the size is so off and it's very hard for her to connect lines, etc). They're using the Handwriting Without Tears and the great thing is she is actually enjoying really no fits at school.

Probably the biggest issues we've had are our weekends. We've contributed the outrageous behavior to being off of her normal routine of going to school, but we're also thinking some of the behavior may relate to her anxiety to rest time and someone she calls a 'mean girl' in the cafeteria. Payton has hated rest time since day one. Laying down for 20 minutes drives her insane and we all know it's because she's such a busy little bee, she can't sit still. (her spec ed teacher told us she admired us because she is so busy....and in my mind I was thinking - wooh! you should see her on the weekends when she is falling apart!). Anyways, Payton's obsession with laying down and the so called mean girl wasn't affecting her at school. As I've heard from most parents of a child with williams syndrome, Payton keeps it together while at school. However, she lets it all out when she gets home. We probably hear 'the mean girl' about 100 times a night. Add on top of that rest time, when she lays out a blanket and no one in the house is supposed to talk and the lights have to be dim....our house has been full of screaming, yelling, biting, hitting...behavior we hadn't seen in a while and quite honestly had not missed!

It's taken me a while to realize that the resting at home and complaining of bright lights was all attributed to her obsession with rest time. Poor Koen gets whalloped by her if he makes a peep because she thinks he should be quiet because it's rest time (if she had her way we'd all be doing rest time 24 hrs/day). Needless to say, our weekends have been really bad.

However, the school is willing to help us! Amazing to me since they are not having any issues with her at school, we're only having the trouble at home. Anyways, they are pulling her out of rest time so she will no longer rest (she doesn't need to rest anyways) and during those 20 minutes they will give her extra help on her fine motor skills. For the mean girl, they are going to start doing a lunch brunch with her where 2-3 times a week she'll get to have lunch in a quiet room with some of her friends (now as I say friends, they are actually just peers her age. If you ask Payton who her friends are, she will always name off adults, such as her aide or teachers. She will never name someone her age....because obviously she doesn't really play :) The spec ed teacher sat at Payton's table yesterday and asked Payton to tell her a secret....."Is the mean girl in here". At first, Payton said no...then a couple of minutes later, Katie asked her again and sure enough, Payton pointed her out. It is a cafeteria lady that has a loud voice and kind of a snarl on her face. Katie thinks every time the lady yells, Payton thinks she's getting onto her, which she's not. So, hopefully taking her out of the cafeteria a couple of times a week, doing some social stories, etc will help Payton out. (Payton loves to tell me every night that the 'mean girl' put ketchup in her hair, bit off her finger, etc). She's really come up with some good stuff!

The past few months have been quite stressful due to her blood pressure and getting her accustomed to school, but we are getting there and feeling so much better now. I'm proud of how hard she's working and the teachers tell me the other students really enjoy her (*sigh of relief!). More than anything, I'm thankful the school is willing to do what is best for her!

I feel bad - most of my update has been on Payton. Koen is doing wonderful as always! He's still the easiest boy and full of love. Don't know what I'd do without him!! We still call him the calm in our storm :)


Amy said...

Thanks for the update! Sounds like wonderful progress. Hope it continues.

Noel said...

Love the update. I am so glad that Payton is doing better with her BP. I know that is makes everything else just a tiny bit easier to handle. Love Koen for being your steady rock!!
I think that in December we will try to have some sort of B-day party for look for an invite :) When Abi names off her firends Payton is always the first name :)

Tara said...

Oh my goodness, Noel, that is so neat!!! I don't think we're going to do much for Payton's this year - she's been so outrageous in her behavior, we're not sure she could handle it?? sounds crazy, but it's not worth it for her.

Michelle said...

So glad to hear the cardio appt went well!

Look how well she is tracing her name- great job! I so wish Kayla's class was using HWT! Her OT uses it with her, but that is not consistent enough when they are using D'Neilan (spelling?) in the classroom.

I'm glad they are taking her out during rest time and giving her OT; that sounds like the perfect solution.

Jennifer said...

So glad the school is working with you all so well! Sounds like they truly have Payton's best interests in mind. Tell Payton we're proud of her for tracing her name so well!!

Also...I'm so glad that you did finally say who the "mean girl" was....I was about to tell you that we could send Faith to school w/P for a day or two and I'm sure Faith could take care of this mean girl business...but sounds like it's under control now. I'm just glad it's not actually a mean little girl! Payton's stories about her sound very amusing! :)

tara said...

OK-that would be so great to watch Faith protecting Payton! (and Payton would LOVE that!!!!).

Nicole said...

Wow, what an update!! That's great that Payton's bp is under control. Hopefully some of the behavior you're seeing at home will start to diminish.

I just have to tell you that I recently got Emmy's pictures taken and her resemblance to Payton is remarkable. Hopefully I will post again one day with a picture so you can see.

tara said...

Oh, Nicole, I hope you're able to post pics soon - I love seeing how they resemble each other :)

jbgrinch said...

sounds like your school system gets it and is doing a great job, how nice to hear that they are flexable and able to deal