Wednesday, August 26, 2009

New School Year-New Quirks

The first few days with Payton went pretty well at kindergarten, but we've gone downhill every day. She still has such a hard time communicating exactly what's going on, so I usually get bits and pieces and then finally am able to put it all together. Typically when she didnt' want to go to school she would tell me she didn't want to rest (they have a 20minute rest time). I would then explain to her that everyone has to rest and to just lay down quietly until the teacher says she can get up. Well, sometime in the past five days she's told me she tries to go potty during rest time (her way of getting out of it) and the teacher says no going potty during rest time. So last night after her gazillion meltdowns she finally says something about a lullaby. It's then that I realize they are playing soft, slow music during rest time. I don't know about your kiddos - but Payton just sobs when anything like a lullaby, Jesus Loves Me, etc is played. It just makes her so darn sad. So - her way of getting away from it was to try and go potty. Today she went with her big headphones to cover her ears during rest time. Hopefully that will ease her anxiety over rest time. If not, they said they could take her to the special ed class and she could stay in the quiet room for her 20 minutes of rest time. She does make me laugh though because she says rest time is SSOOOOO long.

The other struggle with Payton lately has been leaving the house. She is terrified we will not be able to find our way back. This started around July and has been an issue ever since. When my children were babies it was hard being in a car when they would be crying....just wanting to be held or out of their carseat. Now that Payton is is exhausting listening to her scream in the car anywhere we go. I've gotten some suggestions from the listserve that I'm going to try with her, but I really did assume that when I would explain that mommy knows how to get home she would not be so anxious over it. Whew!! Anxiety is so delibitating for these kids.

Last night I was more than pleased with Payton on her new blood pressure medicine - she can now swallow a pill! It's a small pill, but so much easier than mashing it up and putting it in applesauce. And-we are seeing results.......this morning it was 105/61!!! I'm much more at ease now :)

Monday, August 24, 2009


Payton's blood pressure has been awful this past weekend, running about 133/80. I can tell just by looking at her that she doesn't feel well. Her eyes get so puffy and she just looks exhausted. I've got a call in to the doctor and the nurse asked me to have the school check her bp and see what it's running there....the school nurse called and it was 128/80. Dr. Blowey's nurse said we may do a 24 hr monitor-which I think would help get an idea what it's doing all day for her. I feel awful sending her to school (when I left she was still crying and not at all happy to be there....) but what do I do? I really don't like sending her to school when her blood pressure is that high, it makes me nervous....not that I could do anything about it, but atleast I'd be with her. Anyways, I just needed to vent a little. I know worrying doesn't do any good....but I can't help it.

UPDATE: Just heard back from Payton's doc.....adding another med (since she's maxed out on the other one), bloodwork and then we'll go from there.

Friday, August 21, 2009

Excellent Essay

This was posted on the list serve today and I thought it worth putting on my blog. I am sure we've all been questioned on why we do things the way we do and this particular mom wrote an essay to her school to answer that very question. Just yesterday I was talking to my sister about this, but this mom put it in much better words than I ever could.

To make a long story short, earlier this week a question was asked by
some nitwit official as to why there weren't more parents (of special
needs kids) involved in the local PTA and other issues that have come up
that directly involve our kids. His question, which was passed on to me
was, "Where are the parents?" I went home that night, started thinking -
and boy was I pi**ed - and banged this "little" essay out the next day
on my lunch break. By the way, I took copies of this to the school board
meeting that night, gave it to a couple of influential people and it
WILL get around...... .......

Where are the parents?

They are on the phone to doctors and hospitals and fighting with
insurance companies, wading through the red tape in order that their
child's medical needs can be properly addressed. They are buried under a
mountain of paperwork and medical bills, trying to make sense of a
system that seems designed to confuse and intimidate all but the very

Where are the parents?

They are at home, diapering their 15 year old son, or trying to lift
their 100 lb. daughter onto the toilet. They are spending an hour at
each meal to feed a child who cannot chew, or laboriously and carefully
feeding their child through a g-tube. They are administering
medications, changing catheters and switching oxygen tanks.

Where are the parents?

They are sitting, bleary eyed and exhausted, in hospital emergency
rooms, waiting for tests results to come back and wondering, "Is this
the time when my child doesn't pull through?" They are sitting patiently
in hospital rooms as their child recovers from yet another surgery to
lengthen hamstrings or straighten backs or repair a faulty internal
organ. They are waiting in long lines in county clinics because no
insurance company will touch their child.

Where are the parents?

They are sleeping in shifts because their child won't sleep more than 2
or 3 hours a night, and must constantly be watched, lest he do himself,
or another member of the family, harm. They are sitting at home with
their child because family and friends are either too intimidated or too
unwilling to help with child care and the state agencies that are
designed to help are suffering cut backs of their own.

Where are the parents?

They are trying to spend time with their non-disabled children, as they
try to make up for the extra time and effort that is critical to keeping
their disabled child alive. They are struggling to keep a marriage
together, because adversity does not always bring you closer. They are
working 2 and sometime 3 jobs in order to keep up with the extra
expenses. And sometimes they are a single parent struggling to do it all
by themselves.

Where are the parents?

They are trying to survive in a society that pays lip service to helping
those in need, as long as it doesn't cost them anything. They are trying
to patch their broken dreams together so that they might have some sort
of normal life for their children and their families.

They are busy, trying to survive!

Thursday, August 20, 2009

School days

Payton seems to love kindergarten. She doesn't fight me at all to go in the morning and just makes her way to sit in the hallway with the other kids in her class until school starts. I crack up because she looks like such a peanut compared to the other kids her age. BUT - she can definitely stick up for herself if need be :)

The evenings right now are the hardest part for her. She spends a lot of her time being really emotional but I know she is still just trying to process her day. Thanks to my father, she is able to come home after school and just be calm and do her own thing. This gives her time to spend with grandpa and time to just process her day. Thank God for family.

Payton's BP has still been pretty high even since this last increase on medicine. Last night it was 128/80...but I'm trying to be patient with the new routine starting. With the extra stress and anxiety I'm sure it could make it go up. I'm just doing the 'wait and see' right now. However, a couple of nights ago she scared me to death. I had taken her and Koen out on the trampoline to give Bob a little bit of a break (he'd picked Payton up from school and she'd been in meltdown mode for two he needed some peace!). Anyways, we weren't jumping but for a couple of seconds and she grabbed her head and screamed "what's that?". She'd never said it quite like that and I could tell she was in pain. I grabbed her and had her sit on my lap for a while and Koen continued to jump. After a bit, Payton and I stood up to jump again and Payton grabbed the inside of her upper arm and started complaining of it hurting. That got me concerned so I took the kids inside and took her blood this point I was afraid of a stroke or heart know, all ready to call for an ambulance. Her BP was high, but not abnormally high. So, we sat down and kept an eye on her. I called my mom because I was still worried about it - but her speech was okay and she seemed to be acting okay. I have no idea what caused those pains but it really did scare Bob and I. You know, it's not that I'm 'thankful' for williams syndrome, but I sure do look at things differently than I ever did before.

And Koen.....he is still going to Dawn's and having a ball. He does ask about Payton every day wondering where she is. We tell him she's going to school and he just says "OKAY!" and is out the door with his baseball helmet on (I don't know why but that boy loves wearing a baseball helmet, football helmet, or a baseball cap...he cracks me up).

Tuesday, August 18, 2009

Payton's first day of school

Payton's first day of school was yesterday. I was able to meet her aide (which I've heard wonderful things about) and help her find her desk and locker. She seemed more than happy to be there and was very excited to start her day. As I left the room she was sitting at her desk with her para and yelled "BYE MOMMY!" No tears for either one of us :)

I thought about her all day wondering how in the world she was doing - especially during lunch. Carrying something and not spilling it is still very difficult for her and as anyone with our kiddos knows....eating is still very messy. (Bob and I are amazed how much better Koen can hit his mouth with his silverware than Payton....she covers her face and clothes!) I also worry about her on the playground, but my guess is she will spend the majority of her time in the swing. She loves to swing!

Because I work til 5pm I'm not able to pick her up from school. Bob picked her up yesterday (I can not tell you how worried about her he was yesterday). The kids sit outside their classroom in a big group and when the adult comes to pick them up, they call the child's name and the child comes to them. Unfortunately, when Bob went to pick her up Payton had the spaced off, open mouth look (as my mom says, the look we all see on her when she's in her own world....and get so sad when we see it). It pretty much devastated Bob and he's had a lot of trouble dealing with it. He's been up since 4am this morning worrying about her....funny, I was the nervous one before and now I'm ok and he's worried. I guess it's a good thing we take turns. We know she is being well taken care of, but it's so hard to let her go when you know she really doesn't understand so much yet. Yes, she's five, but really at a three year old level. She needs to be more independent but it is so hard to have her at home and not notice a delay but then take her to school with her peers and see that she's no where near she needs to be. Then, the fear sets in. How can she take care of herself, how can she learn in this atmosphere, can she keep up? Questions in time that I know she will prove to us she can's just tough.

After school she had to go to the dentist. She's lost a majority of one of her back teeth and unfortunately she'll need to have it capped, cleaned out, etc. There's no enamel (from what I hear that's common in ws?). Not looking forward to her being put under for that, but I know she needs to have it fixed.

Tuesday, August 11, 2009

Let the school year begin!

Yesterday we met with Payton's kindergarten teacher and special ed teacher. They gave her a tour of the building and let her see the classrooms....and she seems more than excited about going to school. I know in my heart she's ready to go, but still get so nervous and sick to my stomach when I think about it. I know so many are going to think this is the silliest statement, but I know I would feel more comfortable sending Koen off to school than Payton. There is such a difference....I know Koen can fend for himself and figure things out. Payton did fine in preschool and the amazing thing was, children could already tell she couldn't do everything they could, so they helped her. I know that's what will happen in kindergarten as well. But, she's my baby, and it scares me.

And, I know Payton doesn't understand yet....but the gap is getting wider. It's so hard to see her around other kindergartners......and it really does hurt to know that the heartaches I feel with all of this will never really go away. I have really excellent days/weeks and then for some reason have a difficult time. The past few weeks have been the latter. I'm sure it's just the stress of the school year beginning - worrying about her blood pressure, anxiety, prolapse, all the 'what ifs'. But, worrying doesn't solve any of it. Like Bob said, all we can do is pray for her. One more week and I'll be able to post how it goes!