Look out, Victoria. BabyGirl has a secret of her own.

Thank the Lord, Spring is here. I was beginning to think we'd be trapped in the house until the kids graduate from college. And now that BabyGirl will willingly go outside to play, I'd really hate that. Three months ago, if the weather was decent, she would spend all her time in her room instead of going out with Husband and the boys. She spent a good deal of time looking out the window & crying that it wasn't fair that the boys got to ride the four wheeler & she didn't. Now she's the first one dressed & out the door.

Last night I decided I'd had enough of washing the same 3 pairs of underpants because she would only wear "the white ones." The white ones came in packages with printed underpants that were otherwise identical. This has been going of for more than a month, and although a vast improvement on refusing to wear them all together, it still gets a bit wearing.

At one point there was only one pair of the white ones she'd wear. A few weeks ago I started switching out the underpants (unbeknownst to my daughter). Middle of last week I finally told her what was going on. At first she didn't believe me, but eventually she accepted it as fact.

Bed time last night found her in a rather good mood, so I told her we were going to do an experiment. I blindfolded her (which she LOVED) and tried every pair of underpants she owns on her. If she liked them, I put them on her bed. If she didn't I put them on her bed. When we got through the entire pile, there were only 2 on the floor, so I tried them on her a second time. The second time they passed the test.

When I took the blindfold off her face she was thrilled to see the pile on her bed. "I liked all those, Mom?! That's ALL MY UNDERPANTS! They all feel good now!!" She ran out in the living room & told her dad & showed him the underpants she'd picked out to wear to school today.

This morning she even wore a pair of Capri jeans & a t-shirt that hasn't seen the light of day in months.

And bedtime drama is down by about 8,000 % since we introduced the weighted blanket. She's been sleeping under it all night & I really think it's feeding her nervous system as much if not more than the brushing. We've cut back on the brushing quite a bit, but I think I'm going to start setting the timer & doing it every 2 hours again.

I do wonder if this is something she'll grow out of since her SPD is fairly mild by comparison & treatment is working so very well for her. It would be wonderful if this ended up being something we could look back on and say, "Hey, do you remember when BabyGirl was a nudist?"

Night two

She got up about 3 minutes after I tucked her in tonight & told me she couldn't fall asleep. To which I replied, "You should probably try laying still for more than 3minutes." Since she caught me nursing Bitsy, she got to wait around for about 20 minutes & play with her brothers' toy cars. When I tucked her in the second time, she stayed there. No fighting. No crying. Night two. PTL!!

There was a minor meltdown this afternoon over the computer. I was talking to the Queen Mother on the phone & BabyGirl & #1 Son started fighting over the computer. I set the timer giving him 5 more minutes before he had to relinquish it to his sister. I left the room & blows were exchanged. I promptly turned off the computer & told them it was done for the night. #1 Son ran off crying. BabyGirl screamed at me. "Idiot!" This is her favorite thing to call people. It does not go over well. Not even a little bit.

I took her to her room & she had a come apart. Last week I was talking to Inkling on the phone when BabyGirl screamed at me about something. She screamed once, then went on about her business. I told Inkling that a month ago that would have been a full 20 minute melt down. I was so thankful for just that scream.

Sometimes I worry that people think we are too lenient with her. I really need to stop worrying about things like that. No one else lives with her. No one else knows what kind of battles are really worth fighting on a daily basis. Sometimes I do not choose my battles wisely. I'm trying to remedy that.

Just my thoughts tonight.

A weight has been added...but this time it's a good thing.

At our first OT appointment, Miss Emily suggested we get a weighted blanket for BabyGirl. Bedtime was fairly involved at the time, but she would still stay in bed & go to sleep. I borrowed a quilt from Busha that my great-grandmother made. It was pretty heavy (and exactly what Miss Emily suggested), but BabyGirl hated it. She refused to sleep with it saying it was too hot. She wanted no part of any blanket that was heavy.

Since then things have disintegrated at bed time. She goes to bed well about one night a week. The rest of the time she cries and fights and complains that her bed "itches." For a while she'd go to sleep in our bed, then I'd move her when I went to sleep. She's getting bigger, so that's not as easy a task as it once was.

Two nights ago the fight lasted nearly an hour. She wanted me to take the mattress pad off my bed because it was "too soft." My mattress pad encases the entire mattress. You have to pick the mattress up and put it inside the pad & zip the pad up. Not a one man job. Not by a long shot. I spent 20 minutes explaining this to her. She refused to listen & kept yelling if I cared about her at all, I'd take it off. (Another new developement. Followed by, "Ever since I started itching I was trying to figure out if you really love me. Now I know you don't." Oy.)

Eventually I turned off the TV and all the lights, sat in my recliner & rocked Bitsy until they both gave up & went to sleep. BabyGirl spent the first 10 minutes of this endeavor telling me that if I didn't turn on the lights she was never going to sleep & she'd never let me sleep either. This approach does not work on so many levels!

When I made her fidgets bowl last week, she discovered she loves the weight of the beans on her hands. I asked her then if she wanted a "bean blanket" and she said yes. I've been trying to work out how to make one all week because I don't want to spend $89-$150 on something just to find out she won't use it.

Yesterday I let her pick out an old softly worn sheet from the linen cabinet (secretly afraid she'd pick my favorite Wamsuttas from when I was little). Luckily it had a printed grid on it, so that cut my work in half.

I cut the twin sized sheet down and sewed it together to make a giant pocket. Then I sewed channels in it & started filling them with dried pinto beans. After each scoop of beans, I'd sew across the length of the blanket making pockets to keep the beans from shifting too much.

In the end we have a bean quilt. I ran out of beans just over half way through, but it's big enough to cover most of her body if she lays on her side with her legs bent (that's how she falls asleep anyway, so it's not a huge issue).

The next time I go to town, I'll pick up another 5 lbs of beans & finish it off. But until then, it seems to be working. She went to bed with no problems & never once complained that the sheets "itched." I'm not hanging my hope on this blanket with only good night, but I am hoping for the best.

Now, this might seem a bit odd to some of you, but I really feel I need to share. This is a huge step of faith for me...I'd normally keep something like this to myself. After I finished the blanket (or at least as much as I could), I anointed it with oil & prayed over it. Please don't think I'm a lunatic. I do not believe the blanket now has special spiritual powers. This is also not something I do a lot. But I do believe the Lord can use it to bless my daughter, and I also believe He led me to do this. My prayer was mostly a blessing for BabyGirl, but this is the way I felt the blessing should be imparted on her.

I went in her room & took the blanket off her before I turned in for the night (actually I took it & laid it across my lap for about 15 minutes...after I used one of her old brushes on myself. Miss Emily suggested I try some of the techniques to help with my issues). At 2:30 this morning she came in & woke me up wanting the blanket back on. Then this morning when I brushed her (I usually brush her to wake her up, then let her rest in bed until her breakfast is ready) and she wanted it back on again.

I pray this continues to comfort her and give her the peace & calming she needs to sleep each night.

OT Tuesday II

Today at therapy BabyGirl got to swing sitting in her bottom, her knees, laying on her belly, & standing like on a surf board. Then they bounced on the therapy ball, played with putty, and dug in buckets of beans, dried peas, and rice for fidgets.

As our session was winding down, Emily said BabyGirl is doing so well, and we have all the tools we need to keep her diet rich in sensory experiences, so there's really no need to keep going back for therapy. Emily said if we keep everything up at home, we can just see her periodically unless something comes up.

So as things stand now, we won't be going back until August just before school starts.

It really is amazing the changes we've seen in the month an a half we've been working with Emily. I'd never in a million years believed BabyGirl would be wearing new jeans & happily dressing for school each morning just because of some bouncing & brushing.

Thank the Lord!!

Mixing things up BabyGirl style.

Daddy called me last night. He asked how things were going with BabyGirl. I told him our mornings have improved GREATLY. Bedtime, not so much.

I'm much more flexible about what she wears, and she's not fighting when it's time to get dressed. She may only wear three different outfits, but there is no screaming. I think it's a fair trade. And the single pair of underpants she's been attached to has been swapped out (granted, she doesn't know that, but what she doesn't know won't hurt us). There are three pairs of identical underpants & I've been swapping them out on a regular basis.

While I'm still a bit worried about what's going to happen when she has to get new clothes, I'm also much less stressed out by her behavior in general. This summer, when she's living in sundresses once again, her "favorite pants" will have to be lost. I'm praying she'll find a new favorite pair before next fall. (On a fabulous note, she wore Khaki pants and a blue shirt to school today that haven't seen the light of day since before Christmas!!)

Bedtime has become an issue again. She used to go to bed with little to no problem. Then about the time her clothing issues became unmanageable, she started fighting at bed time as well. So we worked on it. For a while we developed a great bed time routine & it was really working for us. She would take a bath, watch a little TV or play, have a snack & a cup of milk, read a good long story, put in her bedtime CD, then cuddle with me in her bed for about 10-15 minutes, then I'd leave & she's sing until she fell asleep. Things were peaceful & calm.

Lately things have fallen apart again. She doesn't want to stay in bed. She won't go to sleep. She gets belligerent & angry. She argues, fights, runs, cries....she goes into full meltdown mode. And if it's not a full on come apart, it's just a long drawn out argument. I get frustrated. She doesn't get the sleep she so desperately needs.

Daddy told me that's what he & QM would be praying about. Last night was a breeze (compaired to the past 4 nights). I couldn't lay & cuddle with her because Bitsy was having a fit alone in her play pen & Husband was already in bed (he worked very late the night before & was exhausted after a full day of running & dealing with the new truck). BabyGirl got up once to go to the bathroom & asked me to come cuddle once Bitsy fell asleep. I told her I'd try, but full expected to spend the next hour fighting to keep her in bed (Monday night I had to lay with BabyGirl a full 45 minutes to get her to settle down enough for me to leave her alone). She never got up again. By the time I got Bitsy settled, BabyGirl was out cold.

Thank the Lord!

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.

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.

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!

The Hand of God

I don't often attribute things directly to the Lord. Maybe I should, but I try to use caution when thinking something is from Him. Today I'm sure He has this entire situation under His control & is using it amazingly.

I'd never really blogged in detail about our issues with BabyGirl before this week. They've been very difficult to deal with, very hard to come to terms with, and harder to admit to. I've truly felt we were somehow failing her as parents. I really believed this to be a disciplinary issue...the tantrums, the refusals, the fighting. Last week I reached my breaking point. I no longer knew what to do. I couldn't cope. Everything seemed out of hand. It was truly the low point of my career as a mother.

I spent Saturday & Sunday trying to find a plan of action. I knew something had to be done, but had no idea where to start. I wanted to get counseling, but I'm leary of many secular counselors. Our rural community doesn't offer much in the way of options. So I prayed. Quite a bit. I told the Lord I couldn't handle this any more & I was truly scared for BabyGirl. I knew something was wrong & beyond my ability to help her.

Earlier this week I blogged about escaping to Busha's. I said more about our struggles in that post than I ever have before. Samantha stumbled upon my post the next day. To quote her directly, "...my daughter was taking an usually late and long nap and I was procrastinating from the household chores. I had come across your blog a few times before, but I was really just trying to kill time before my pumpkin awoke. Funny how things work out, huh?" She's the one who suggested BabyGirl might have a sensory issue. QM called me to tell me about Samantha's comment & thus began our journey down this road.

Since that post I've had more than one person comment that this might be an actual disorder and not just our imagination. Zann put me in touch with her sister who's two girls have struggled with similar problems. She emailed me yesterday & I can say reading about her youngest is like reading about our BabyGirl. Nan emailed me to say her daughter-in-law wondered if we weren't looking at SPD. She's an Occupational Therapist & has a good deal of experience treating kids like BabyGirl.

If it hadn't been for the influx of information, I'm not sure I could have handled what happend Thursday afternoon. I was exhausted from a night up with a teething Bitsy, a trip to town, bathing the boys who had just come in from playing in the 1/2 inch of snow on the ground, putting away the groceries, trying to cook lunch, and dealing with a squalling Bitsy all at the same time. The phone rang. When I answered, BabyGirl's pricipal apologized for calling & explained they had concerns about BabyGirl's behavior. Her teacher (and one other) had noticed her putting her hands in her clothing frequently. Her teacher (Mrs.G) thought she was "touching herself" and was required by law to report the behavior to the principal. Her teacher goes to church with Busha & Bucka so she knows our family outside of the school setting to an extent. Mrs.G was so upset about having to report it, and Mr.C (the principal) was equally upset about having to call me.

I told him what we had just learned about SPD and that we were investigating the chance that BabyGirl has it. He was so very understanding. His first words were, "That makes perfect sense!" Mr.C said to be sure to keep them informed and if there was anything the school could do to help, don't hesitate to ask. I thank the Lord Mr.C's not one for jumping to conclusions.

I went in the kitchen & cried...a lot. What would we have done or said had he called a week earlier? Would we be dealing with Social Services instead of offering a simple explanation to a very rational principal?

I went in to talk to Mrs.G that afternoon after school let out. She was so very relieved to have me there. She told me she'd been struggling with her decision all week & had been a wreck ever since she had to talk to Mr.C about it. I explained what little we knew at the time about SPD and gave her a list of web sites I'd found that have been very helpful. She said she would pass them on to Mr.C as well so they will all be in the know. Mrs.G also said she thinks an Occupational Therapist would come to the school to work with BabyGirl.

There is no doubt in my mind that God had His hand in the timing of all this. Not to mention the doors that have opened through my blogging. If not for the blogging community I've been a part of for the past two years, we'd still be fighting a loosing battle. He is good & I am thankful.