One Week Down...hundreds of thousands more to go

I am utterly amazed. BabyGirl has gotten dressed & left for school happily every morning this week. We are nearly a full week from the last major melt-down. I'm a tad suspicious.

I will gladly confess that I have washed the same pair of underpants for her to wear to school every day this week. I have a new blessing for the underpants:

May God bless & keep the underpants in one piece until she decides it's OK to try on a different pair.

A few weeks ago BabyGirl spied a Hannah Montana doll at Wal-Mart. Not willing to shell out $16 randomly, I told her she could earn it. She's been filling out a chart fifty cents at a time ever since (for good behavior & chores completed). She's still about 3 dollars away from her actual goal, but this week has gone so well, I went ahead & picked one up for her today. I can't wait to see her face when she gets home.

She said her next goal will be to earn a Hannah Montana wig...why my blond daughter needs a blond wig is beyond me, but if she's working towards a goal, we're all much happier.

Oh, and she wore a shirt today that was not one of the 3 she willingly wears on a regular basis. February is reading month at school. Today was their Book-a-roo party for everyone that met the reading goals. They were all supposed to dress as cowboys/girls. Art gave us an adorable western style shirt that had belonged to Syd and BabyGirl has never worn. She wore it today along with her one pair of jeans & my cowboy hat. She even let me braid her hair (a rarity as she doesn't like the ends of ponytails to touch her neck or back).

I picked up a new pair of jeans for her today. They are soft and look nicely worn (although they're new). I only hope she likes them. The one pair she has that she'll wear, are a full size too small & I'm pretty sure she's flashed her butt crack at every member of the student body at this point. Please, Lord, let her wear this pair of pants!

We have a diagnosis!

Miss Emily's OT Evaluation came in the mail today!! Not that anything she says in her report is a great surprise to me, but it's nice to have it in black & white that BabyGirl does indeed have SPD.

"BabyGirl is a 6 year old girl with obvious tactile hypersensitivity....it appears that she has definite touch processing difficulties as well as behavioural outcomes of the processing. Her inability to tolerate textures and light touch impact her emotional responses as well as her ability to typically function in her environment."

Tomorrow I will take copies of the evaluation to school for Miss Dena so she can begin documenting & treating BabyGirl at school.

It may seem odd, but having an official diagnosis helps me. Now I don't feel like I have to qualify when I'm explaining to someone what's going on. I can simply state, "She suffers from a textile hypersensitivity sensory processing disorder." I wonder, can I get it printed on a shirt (for me of course, she'd never wear it)?

Day 2 & Like Mother Like Daughter

Day two: dressed & out the door with no fighting!! I should admit that I've made sure the one pair of underpants she'll wear are clean every morning, but that's a small price to pay for peace.

Last week I was going through the check list for BabyGirl's OT to include in her eval report. As I marked the issues BabyGirl has & the degree to which certain issues affect her, I began seeing myself in many of the answers. (This isn't the same as the check list I used, but it is similar if you're interested: http://www.sensory-processing-disorder.com/sensory-processing-disorder-checklist.html)

I cannot abide being touched lightly & unexpectedly. I can't tell you how many times one of the kids has brushed the back of my leg while I was washing dishes only to have me scream & nearly kick them. I am very ticklish & attributed my aversion to light touches to that, but now I'm wondering if there isn't more to it. Being very ticklish can be a symptom of SPD as well. I get dizzy easily (I can ride roller coasters all day long with no motion sickness, but put me on a Tilt-a-Whirl & you may want to duck. It will not be pretty), I can't even watch the kids ride on the merry-go-round at the mall with out getting queasy. I'm generally clumsy. I cannot bear to shake hands with anyone who doesn't have a firm grasp on my hand. Wrinkles in the bed sheets can drive me crazy (not little, needs to be ironed wrinkles. Big, not tucked in properly wrinkles), and I have to straighten out the blankets with great frequency. As a child I tucked every thing in. QM often said if I could have tucked my dresses into my tights I would have. If the heels of my shoes slipped even a little I didn't want to wear them (and with the horribly narrow heels I have, that meant we made twice yearly trips to St.Louis to have my dress shoes custom made).

While I am in no way belittling what my daughter goes through (I know my issues pale in comparison to having your clothes feel as if they're made of fiberglass), I can see where she gets this. I wonder if SPD is genetic. QM & Busha share some of my issues as well. On the message boards there are many parents with more than one child with SPD.

I only hope none of the other 3 kids suffer like BabyGirl has.

And Now we do the dance of joy!!

Happily dressed her self & left for school this morning. Even put on underpants with no assitance!!! I am one happy mom today.

Thank You, Lord!

Whoops...again

Thanks to Grace for pointing out that I had my daughter's coming age wrong on the ticker. I fixed it. Think I need a nap.

Therapy Begins

Our visit with Miss Emily went very well yesterday. She was so happy to see BabyGirl & the feeling was definitely mutual. BabyGirl lights up when Miss Emily walks into the waiting room to get us.

They played a bit, then Miss Emily started asking more questions & walking me through the Sensory Diet she set up for BabyGirl. We now have a list of things to do everyday, some things every two hours. It's a lot of work, but if it helps, it will be totally worth it. Just to give her some relief...that alone would be a blessing.

Miss Emily reccomended a lot of bouncing (on her exercise ball or the trampoline...guess Husband was right to go out & buy it), swinging (especially multi-directional swinging like a tire swing or the disc swing in the picture), bike riding, horse back riding, sliding, sucking (water bottles or straws), crawling, and anything else that "promotes weight bearing through the upper extremities." It's called Deep Pressure & Proproceptive Technique. They way she explained it was that BabyGirl's nervous system is underdeveloped. These "deep touch" feelings & weight bearing activities will feed her nervous system & help it grow.

Every two hours (when she is at home & awake) I have to brush her arms, legs, hands, feet, & back with one of these special brushes. After we brush, I have to "compress" the joints in her arms & legs. Basically I push the bones on each side of the joint in twoards the joint. That takes a little doing. Really it's a quick thing, maybe 3 or 4 minutes all together, but it depends on BabyGirl's mood how well it goes. Until this last time, she's done very well with it. Last time, she just wanted to be left alone.

Today I made her a calm corner in her room. It's a tent made from an old sheet with things inside she can use to help self sooth during a meltdown (or a MAJOR meltdown as BabyGirl calls them). It's never to be used for time out, but she is supposed to go to it when she feels herself "freaking out." Haven't had to use it yet, but she loves the idea. In the past I've tried to put her in her room so she can calm down. Most of the time she comes out swinging & screeching that she'll "never stay in that stupid, itchy room!" So I am a little doubtful, but willing to try.

Miss Emily is going to get all the paperwork together for Miss Dena and then BabyGirl will do OT at school once a week. We'll do her Sensory Diet everyday at home, then she'll see Miss Emily once a month. If things don't get better this month, we may bump up the visits to Miss Emily to once a week. Miss Emily left that up to me to decide.

I'm praying there will be a significant change or at the very least a move twoards improvement with in the next month. We need a significant improvement...badly.

Whoops.

I think I may be neglegent. BabyGirl is 6 1/2 years old & had never been to the eye doctor. I got a letter from the school nurse this weekend saying she's failed 2 vision tests & we need to get her checked. So March 3rd, she's off to the eye doctor. She's not happy with the prospect of glasses.

Tomorrow we go back to finish up our eval with Miss Emily. I'm actually excited.

Big Fun with Miss Emily!

Today was the big day. We met Miss Emily at the hospital at 9 o'clock this morning. She is a God send. I cannot explain how wonderful it was to meet someone face to face who completely understood what we've been going through.

She came in and asked BabyGirl if she wanted to come play. BabyGirl was thrilled! Miss Emily asked her a ton of questions about everything from her clothes to bright lights to what kind of food she likes. BabyGirl was shockingly open with Miss Emily & was very good at explaining her problems. I was amazed. Normally BabyGirl doesn't want to tell people what's going on with her...not today. She knew this was the time & place & she told Miss Emily everything she needed to. That was a God thing!

They did some work on a therapy ball & then worked with scissors & pencils. All the while Miss Emily was explaining to me what they were doing & why. She asked me a ton of questions about BabyGirl & what we've observed. She sent me home with two questionairs & a small stack of papers about SPD.

We go back on Wednesday for the rest of the Eval. & Miss Emily is going to set up a sensory diet for BabyGirl that we can do at home (a routine of things to help her...therapy at home so to speak). With a good sensory diet at home, and therapy at school (which Miss Emily said she could set up as well), BabyGirl may only have to go to the hospital to see Miss Emily once a month or so.

She said the trampoline that Husband bought was a wonderful thing to have. She also suggested an exercise ball (which I picked up today) for BabyGirl to set on while she does her home work. She told me that many of the things they'd do would seem to have nothing to do with BabyGirl's textile hypersensitivity, but the goal is to make her entire body (nervous system) function as a cohesive unit. Kind of a fix it all to fix the one approach.

I've been working on my homework & anxiously looking forward to Wednesday. Oh, and I called Miss Dena (the school's OT) to see what she needs. All she needs is the OT evaluation from Miss Emily stating BabyGirl does indeed have SPD. Then she will have BabyGirl labled as developmentally delayed (since the schools don't recognize SPD as a condition at this point). That means she can begin to work with her once a week at school. She said if Miss Emily can set up a program for BabyGirl to do at school, that would help her get the equipment she needs. If she sets up the program on her own, she may have to stick to what ever equipment she has on hand.

BabyGirl told her Daddy, "I really like Miss Emily. She's really nice & a lot of fun! We played a lot!" That's the best part of this all. I truly believe Kork was right when she said God sent Miss Emily here for us. I have no doubt.

Rehab

"First Grade"

They tried to make me go to First Grade but I said 'no, no, no'

Yes I won't wear jack but when I come back you'll know know know

I ain't got the time and if my daddy thinks I'm fine

He's tried to make me go to First Grade but I won't go go go

I'd rather be at home to play

I ain't got 180 days

Cause there's nothing

There's nothing they can teach me

That I can't learn from Playhouse Disney

Baby Sister, DDS

As BabyGirl's bedtime routine has become rather involved lately, most nights (if Bitsy is still awake), I put the play pen in front of the TV, put in the Baby Einstein Lullaby DVD, and plop Bitsy in with a few toys. Then BabyGirl & I curl up with a book, read, cuddle, and end our day.

Tonight as I was getting the DVD ready, BabyGirl was entertaining her sister. Suddenly she yelled help then began screaming. I turned around to find BabyGirl with a mouth full of blood & a very dangly tooth. The tooth's been loose, but wasn't quite ready to come out. Apparently Bitsy disagreed because she nearly pulled it out!

A traumatized BabyGirl finished the task, but was not happy about it. I hope the gold dollar tucked inside her tooth fairy pillow will make up for it.

God bless you, Miss Emily!

The new OT from the local hospital called me today. I can tell you right now, I love Miss Emily.

She called to set up BabyGirl's eval. but seemed a bit confused with the order. "It says here she needs to be evaluated because of hand problems & a possible sensory disorder. Do her sensory problems have to do with her hands?" I said no & began explaining BabyGirl's poblems to her. She completely understood & was so supportive about it. I told her we thought we were loosing our minds. "No, you aren't, honey. She's miserable & you had no idea why. Don't worry. We'll help her."

She listened to me for about 15 minutes & gave some advice. She said she really looks forward to meeting us on Friday. I am thrilled.

We had been 4 full days without a major melt down & I was beginning to think the come aparts had all been in my imagination. BabyGirl assured me today that they were not. She wanted to make coffee filter sun catchers this morning. For some reason she wanted to stand in the corner by #1 Son's chair to color. This caused major drama & she fell apart. She spent 30 minutes screaming in her bedroom floor. She writhed around on the floor screeching that her hair was itching her & clawing at her self. I finally got her calmed down enough to put her in an oatmeal bath. Things have been better since then.

I'm trying to adapt the attitude of giving thanks in all things. So today I am thankful that we're having a snow day & she could stay in her room during the melt down instead of having it in the van on the way to school. That has gotten dangerous lately.

So now I have to be careful that I'm not hanging my hopes on Friday & Miss Emily. She's going to help, but this will not be a quick fix.

Praise God from whom all blessings fall...

My daughter dressed willingly in long sleeves, blue jeans, and underpants for school this morning. Proof positive that there is a God & he listens to prayer.

GNO: Girls Night Out

For some odd reason, everytime I post here, I get a window inside a window. It's massively irritating.

Yesterday I had a babyshower to go to for an old neighbor of ours. The father of the baby lived across the street from us when we lived in town. He was a kid when Husband moved into the house. They played basketball together. I can't belive he's old enough to be a father.

I planned on going by myself (well, with Bitsy...but she's too little to count still), but Husband decided he wanted to go check out the new Menards near where the shower was. At the last minute, he changed his mind because he was still doing chores. I figured BabyGirl would decide to stay home since her dad was going to be there, but she made a card, put on her favorite dress, and went with me.

She had a blast at the shower (she even won a set of Fresh Linen candles playing the string game...where you guess how big around the expectant mother is. BabyGirl was off by about 1/4 of an inch). Then we went in a kids boutique & she proceded to spend our entire income tax return window shopping for dresses. I have to say I'm a tad worried as her tastes run a little JonBenet. We went to the local off name discount store (how that place has stayed open this long is mind boggling) and picked up The Swan Princess on DVD. Then we headed to Pizza Hut so she could use her Book It cupon.

We had such a good time. Bitsy was happy & chatty. BabyGirl got lots of compliments on her dress. We talked & laughed & played. It was such a joy. We haven't had many good days together lately. This one was much needed.

When we got home, she watched her movie & played & decided bedtime was totally unnecessary. I tried to get her in bed once (to no avail) and had to give up to put Bitsy down instead. BabyGirl convinced her dad to play checkers with her. They were still playing when I went to bed at 10:30. I think they played until close to midnight. She must be a child checkers prodigy. She's won every game they've played. ;)

Today she was supposed to go with me to Uncle E's to see Beffie's dresses for the Valentine's dance & prom, but she didn't want to get dressed again after we got home from church. I started to argue with her, but Husband said to let it be. He'd stay here with her & play checkers some more. She did get dressed for church with no problem...even putting on her pearls & a ring. But that's because I washed the underpants & dress she wore yesterday & wore them today.

I'm just glad we've had a good weekend. We needed one badly.

I'm hoping to hear from the OT at the hospital tomorrow...I'll keep you posted.

Forward Momentum

It feels so good to be able to write something postive here. To write that we have finally entered into the beginning of evaluation if not treatment.

The OT came yesterday to talk to BabyGirl at school (I didn't find out until breakfast this morning). The OT came back to see her today. The OT called me. I was happy. The problem is she cannot touch BabyGirl without a diagnostic code. State rules that they are trying to get changed. Even if we get a diagnosis of SPD, she still can't do much as it's not recognized by the mainstream medical community. But she said she could treat her if she can list her as "other health impaired." My concern was, would this lable her & stick her in the Special Ed class? She doesn't need to be in Special Ed & I really don't want her there. I have no issues with Special Education, it's a much needed program, but it's not where BabyGirl needs to be. Miss D assured me that would not happen.

She told me to call our Doctor's office & have them order an outpatient OT evaluation. I called the doctor & left a message for his nurse. We played phone tag for a while. I called the OT's at the hospital to be sure they dealt with kids & SPD. Great news: there's a new OT starting Monday who has worked extensively with pediatric patients. That also means she should be very well versed in SPD. I called the doctor's office back & they're going to fax an order to the hospital to have them evaluate BabyGirl.

I am so relieved. We are getting somewhere. This ball is rolling. Thank the Good Lord Above!

For My BabyGirl

Leibesh: Rabbi, Rabbi, is there a proper blessing for the underpants?

Rabbi: A blessing for the underpants? Of course. May God bless and keep the underpants... far away from us.

To homeschool?

When we picked BabyGirl from school yesterday, she was happy. She said her head hurt, probably from a serious lack of sleep, but she never did meltdown. It was a great surprise considering how things had gone the night before & earlier in the day. She did her homework (almost happily), took her bath, watched a video, ate dinner, and sat with us to read bedtime stories with no major drama.

After the boys were tucked in, I let her watch Gigi (the one based on the kids book, not the one about a Parisian courtesan) while I soaked my hurting back in a too hot bath. Then we read two chapters of Peter Pan & cuddled for a few minutes before I left her tucked in. She never fussed or fought. She stayed in bed & slept well last night.

Then this morning rolled around. She didn't want to get up, but once she was up, she was pretty calm. All was well until time to get dressed. By the time they left I could hear her screaming eventhough the van door was closed as was the screen door on the house. She was completely unglued.

When Husband came home he said we needed to start looking into homeschooling. It's gottent that bad. I'm not sure this is the right rout for us (as homework is usually a serious battle), but I do know it's worth investigating. Right now it just seems like one more thing to worry about...and I don't have the engery to worry over anything!

Sewing, sleepless night, and school worries

Last night when her daddy was watching the Super Bowl, BabyGirl & I were playing string games. We got as far as the Tea Cup & Owl Eyes when she lost intrest in learning new shapes. Instead she used her new found string powers to trap everyone in the house in her web.

After 20 minutes of, "Who wants to be captured?" She informed me she wanted to knit something. I told her I don't know how to knit, but maybe we could sew something. She's convinced we need to learn to knit incase the boys wet their pants on vacation this summer. "Then we'll have to knit them new ones really quick, Mom."

We made a quick dig through the scrap basket & came up with some soft floral flannel to make a doll blanket. I let her help iron the material & run the sewing machine. Then she did all the hand stitching by herself. She was so proud of it. She wrapped my old doll up & tucked her in for the night.

After that we had a heck of a time getting her settled in to bed. She didn't give up until around 10:30. She kept getting angry when we'd say anything about school. She told us she hates school. She hates wearing clothes to school. She doesn't have any friends. She doesn't like to learn. We talked to her about her dad switching shifts so he'd be home with her more often. We talked about home schooling. We talked about having a friend over to play. She wasn't having any of it.

I laid in bed with her last night after I tucked her in. She told me everyone at school made fun of her because they said she said a bad word. I asked her what she said & she said, "I was showing them my middle finger & they said it was a bad word. I said it was not & they all called me a liar." I have no idea when this happened, or what she was showing them on her finger, but I do know she has no idea what flipping someone off is. I told her that she wasn't lying, but there are people who stick up their middle fingers & mean bad things by it. I said, "Daddy & I try not to let you see a lot of bad things, so you didn't know. You didn't mean anything bad, so it's OK."

This morning she cried that she didn't want to go. She was so tired (big surprise). She didn't want to go to the doctor (she had a strep test since we pulled her off antibiotics). She was a mess. My heart was breaking for this poor kid.

When we finally got her to school, it was time for recess. I walked her out & watched as a Kindergardener grabbed her by the arm & dragged her off to play. BabyGirl was smiling & thrilled to be out playing. I don't think she's as lacking in friends as she says. I think it was more a bad case of nerves from being out of school so long. I know she has a tendancy to be shy & I think it's being made worse by her issues with clothes.

I feel so helpless sending her off to school some days. I'm not worried about her being "popular" but I do want her to have friends. SPD can cause social problems & that's just one more thing to worry about. I figure if the teachers have noticed her scratching, the kids have too.

I so wish we could get this ball rolling a little faster!