Essays by BabyGirl herself.

Essay #1. If I had 100 Dollars, I would.... I would byu a TV and a neckless and I would byu a brasless (that's bracelet) and I would get my ears perst.


Essay #2. I Have A Dream. My dream for our world would be everyone would have a house and have stuf that they have everything the need because they could die. They can get sick or they can get hurt.


Essay #3. I wish no one would litter. I want the world to be safest. It will be the hardest job. I hope the pariry (prairie) will get bigger. I want the cleanest water. I want the biggest pool of water and....


Mrs. S says she's smart. Very smart. But she's also very worried about her attention issues. She just cannot seem to focus & get her work done in time. She's so easily distracted by any thing going on around her. But I know she also uses the excuse "the other kids are distracting me" to make up for just gazing off in to space frequently.

She's learning what she needs to learn, she's just not finishing her work. I'm at a loss as to what to do.

In much better news, she's doing great with her clothing. She's even willingly worn layers & socks to play out in the snow (a major battle last year). Her wardrobe is expanding by her own choice. In fact, I don't remember the last time she wore the stand by khakis to school. And bed sheets have ceased to be an issue at all. She even sleeps under a blanket & a comforter now, something she would never have tollerated last winter.

Her Uncle Bubba is getting married in September. He & Aunt Bec have asked her to be the flower girl. She's over the moon about the prospect. When Bec first asked, I was a bit nervous thinking BabyGirl might never agree to wear the dress picked out for her. But with the improvements she's made lately, I'm not nearly as concerned. Shoes may still be an issue, but I'm trying to plan ahead. I want to get her some white patent leather flip-flops for church this year. If I can find them, I'll tuck away an extra pair to keep nice & clean for the wedding.

Weary.

I feel as though we've taken a giant step backwards. BabyGirl refuses to do her OT. She wants nothing to do with her sensory diet. And now dressing is becoming a battle ground again. It's not the daily battle it was last year, but this morning was one of the worst mornings we've had in nearly a year.

She sat on her bed crying & repeating, "I don't know what to wear. I just don't know what." After almost 15 minutes spent trying to help her decide & talking over choices I left the room in frustration. I told her I had to fix #1 Son's coat & she had until I was done to make a decision or I'd be dressing her myself.

When I came back in, nothing had changed. I proceeded to attempt to dress her & things went to hades quickly. In the end, Husband & I had to physically restrain & dress her. Then he had to carry her kicking & screaming to the truck.

I know many people would wonder why we even take her to school on days like this. There are actually two answers to that question. #1. By the time she's in the school building (many days before the truck even gets to school), she has calmed down & even if still angry, goes willingly into class. And #2. If we kept her home every time this happened (if we chose not to dress her & carry her fighting out the door), she'd still be in first grade having missed nearly the entire first semester. I really don't want the truant officer calling and asking why my child is never at school.

This morning I am shaken, upset, frustrated, angry, and worried all over again.

Learning Curve

You'd think after dealing with this SPD business since early spring, I'd have a handle on it. Nope. Not really.

Today I was making beds when it occurred to me that we just move from one disaster to the next. Early in the summer BabyGirl couldn't stand the feel of her sheets. Before that it was underpants. A few weeks ago the shoe thing started. When school started it was long pants. She phases from one thing to the next. I'm beginning to wonder if it will ever be nothing. Will she ever live without some sort of sensory issue? Will there always be a new issue to deal with?

For the longest time I didn't have a chance to be glad that she was over the last issue because a new one immediately reared it's ugly head. Right now she's sleeping with no problems (it takes a while for her to unwind & stay in bed, but no screaming over her sheets). She gets dressed (most mornings) without a melt down. She wears clothing around the house all the time(at least a night shirt or sundress...until bed time when she has to strip back down). She's been wearing shoes pretty well (Sunday was HORRIBLE, but I think that may have been a passing thing). And I just realized last week that she'll now sit in the kitchen chairs (they're cloth covered & she hated them). So now I'm worried. What's coming up next?

Don't get me wrong. Things are not easy by any chance. She still likes to rotate the same 3 outfits day in and day out, but she has 9 pairs of underpants she'll wear. She's only worn one dress to church for the past 3 months & will only wear it with flip flops, but she does get dressed. The child still has a temper that would scare most people half out of their whits. She can go from delightful to psychotic in 3 seconds flat, but given time to cool off (sometimes an hour or more), she'll come out of her room like nothing ever happened.

She flat out refuses to do her OT now. The brushing she loved, she can't tolerate now. If I suggest joint compression, she freaks. But she will do things she doesn't remember Miss Emily suggesting as long as I don't mention therapy or sensory diet.

She would love to go back & see Miss Emily (and I'd love to take her) but our insurance still has not paid on the first go around of testing & OT she had. I have no idea if it will pay or not and I can't risk racking up thousands of dollars for OT that we can do at home if she'll only cooperate.

*On a side note, why does 45 minutes with an OT cost almost $300?!*

When people ask me how she's doing, I have to answer day by day. Some days she's great. Some days, not so much. And then there are days when I have to answer minute by minute. Those days are tough.

But this is life with my BabyGirl. I won't say I wouldn't have it any other way. What parent would wish this on their child? But I will say she's worth every minute, every struggle, every fight, every victory.

I know, I know

It's been a VERY long time since I posted here. I'd thought about deleting this blog, but I'm not sure it's served it's purpose just yet.

After all, BabyGirl still has SPD. This is still a struggle in our lives. It's just not the daily battle it once was. We're not dragging a screaming child out the door every morning. We're not wrestling her into clothing that she'll just strip off as soon as she gets in the van. I'm not in tears when she leaves for school each day.

But we still have issues.

First of all I would like to announce that my daughter wears clothing every day now! This is a HUGE step in our house. She's not been allowed to run naked since her birthday in June. She may only have on a sundress & nothing else or an old t-shirt or tank top of mine & nothing else, but she does stay dressed. She still sleeps in the buff, but that I can deal with.

Secondly, she wears underpants willingly when we leave the house! This is also a HUGE step for her. She's found a kind she really likes so I bough 9 pairs & she's happy with them.

Thirdly, she will wear her hair up on occasion. In the midst of her SPD melt downs she couldn't handle the feel of her pony tail touching her neck or back. Now it doesn't seem to bother her. She likes to wear it up. She's also growing out her bangs (which is driving me nuts, but she's doing OK with it).

BUT...(you knew all wasn't well, didn't you?) she's having issues paying attention & following directions at school. A note came home from Mrs.S on Friday & I went in to talk to her today. BabyGirl is home with strep throat so I wanted to pick up her work. Mrs.S and I discussed BabyGirl's problems transitioning from one task to the next. She ends up floating around in outer space some times & has a tough time focusing on the tasks at hand.

I've talked to her. Mrs.S has talked to her. Now I have to find a way to ground & center her so she doesn't fall behind. When she does her home work, I have to sit with her & keep her focused. Mrs.S can't do that. She has 27 kids to teach.

So, that's my task for the moment. Focusing a butterfly. Oh dear.

It's Happend

My BabyGirl is seven. She's only 3 years away from double digits. She's only 6 years from her teen years. I'm only moments away from the fetal position.

Didn't we just bring her home from the hospital? Isn't she still packing around her sippy cup? Blue's Clues is her favorite show, isn't it? What? Hannah Montana? No. She can read? When did that happen? Wait, she wears clothes now? Oh, only when there's company, right? All the time?! How did I miss this?

Ah me.

To celebrate her birthday yesterday, we went to the doctor! She has her first case of poison ivy. Yippee. I'm not sure, but I think I'm immune to it (at least at the moment...I know that can change at anytime). I thought the kids were too as they spend all their time outside & we live at the edge of a woods. No one's ever had poison ivy before....maybe we've just been exceptionally lucky (or their guardian angels work overtime).

She doesn't have it particularly bad, but Doc put her on an oral steroid & a topical steroid just in case. Her grandmother (MIL) gets it horribly as does Grandma M&M (my grandmother). He didn't want to risk it especially with the weekend coming. She's not thrilled with the prednisone, but she's taking it. The Skittles I'm bribing her with help!

But she did stay dressed all day yesterday! I was worried that the itching from the poison ivy would send her back to her "nekked" ways. But no....she not only wore clothes, but kept on her shirt & shorts until bath time last night. Normally she'd strip down & put on a giant t-shirt at the first opportunity. I just hope she can keep this up. I don't want a fight. I'm tired of fighting. But more than that, I'm tired of her being naked all the time.

One more thing. In the past few weeks, she started clicking her tongue all the time. It's irritating as all get out. She's also started doing strange things with her spit....blowing bubbles & sucking it through her teeth....constantly. Since most bodily fluids make me sick at my stomach (spit being one of the worst offenders), this is not a good thing. I tell her no less than 10 times a day to "quit clicking!" It's like living with that guy from The God's Must Be Crazy crossed with a redneck dipping Skoal. So gross!

I'm pretty sure this is a sensory thing. I need to post on my message board about it & see if anyone has any advice. I've been pushing chewing gum & drinking straws to help curb it. Maybe we need to get her a teething toy...sounds strange, but if she has an oral need that needs to be met, I'd rather that than all this clicking & slurping....I shutter just typing it!

Summertime & the livin' ain't easy.

Yikes! I didn't realize how long it's been since I posted here. March?! That can't be right...OK, no, it was April.

BabyGirl is doing pretty well with her clothing & bedding at the moment. She's not thrilled with clothes, but for the most part, she will get dressed without a major fight. She's been told come Friday naked time is over. She will be 7 years old on Friday. That's far too old to be running 'round in her birthday suit.

I started this when she was 4. On her fourth birthday, she was told, no more naked time. Then when she turned 5, then 6....and I'm pretty sure most Christmases in between. Until this year we didn't understand what we were dealing with. Now we have a handle on it, I'm hoping it will be easier to deal with. She understands & seems to be OK with it...but wants to be naked (or half clothed) until absolutely necessary.

Quite a few behavioral issues have reared their ugly heads. She's very mouthy. She likes to hit the boys if they cross her in any way. "You're not the boss of me!" has become her favorite phrase. I'm cracking down pretty hard this summer on these things.

But she's also learning more coping skills. She spends a great deal of time outside. Her dad's usually busy with his chores & I'm in the house with her, so she has to learn to deal with issues on her own. She's also become a HUGE help with Bitsy. She adores her baby sister & that works to our advantage in many ways.

I cannot believe she'll be seven in two days! Where has the time gone? Oh, I remember....it was spent wrestling her into clothing!

FarmWife's World

I just posted this in my Adult SPD share group. I know I've touched on this before, but I really wanted to lay more of it out today. Call it a need to put it all on the table. I feel the need to share.

As long as I can remember I've felt slightly disjointed. I've never really been able to explain it.

When I was 3 QM put me in ballet. I loved it & had no problem with the dance steps especially with all the repetition we did. But when it came time to do cartwheels on the mat, I was lost. I couldn't figure out how to make my feet go up in the air without killing myself. It terrified me. I think I was 8 years old before I got it.

I was 10 before I learned to ride a bike without training wheels. All the other kids on my street had their training wheels off by the time they were 6. And even when I learned, I was never particularly good at it.

I was never good at sports. Dodge ball petrified me, Basketball was too confusing, Volleyball was an exercise in terror. I wasn't coordinated enough to play anything that took hand-eye coordination. In fact, I have a horrible time remembering which is my left side & which is my right. But I loved to swim & picked that up very quickly.

In high school I joined the color guard (flag corps) in the marching band. I was fairly decent at it, but it took a lot of practice & things had to be broken down for me step-by-step.

I've always been clumsy & unorganized. I bump into things, drop things, loose things, forget things, & stumble easily. I really have no idea where my body is in respect to the stuff around me. I have horrible posture & constantly stand with my knees locked.

I get overwhelmed easily too. If the house is a big mess I can get almost panicked (but I spent the first 20 years of my life as a total slob). I truly want it all neat & organized, but end up giving up quickly because I'm overwhelmed by the chaos. Occasionally I start purging the house & have to stop myself before I throw it all away. I teeter between wanting a severely minimalist life & packing away every piece of paper my kids have doodled on for later.

Just the task of grocery shopping can be hard. I may go to the store to stock the pantry & freezer and come home with 4 boxes of Pop-tarts, a pint of ice cream, and salad dressing instead. If I don't prepare myself for a trip to the store I'll wander aimlessly looking at everything & never remember what I'm there after. I'll buy a shirt, earrings, and hair dye when I'm supposed to pick up tissues.

I love the mall, but if I'm there for a purpose I can never accomplish it. I end up wandering around in a half daze, completely indecisive.

Until recently I thought everyone was secretly like me. I assumed everyone felt shy & introverted unless around people who know them very well (and even then sometimes). I never understood what people meant when they said they were comfortable in their own skin. I've never felt that way.

I thought I was just odd because I couldn't stand to be touched lightly. If someone shakes my hand limply, I want to come out of my skin. If one of my kids brushes my arm gently, I jump. I am so ticklish if my feet are touched lightly I will kick.

Husband (who is very athletic & not even a little ticklish) thinks I'm overly dramatic. A few weeks ago one of the boys touched the bottom of my foot while I was resting & I nearly kicked him. Husband said, "You can control that if you want to." I've tried to explain that I cannot. I'd never kick the kids if I could prevent it! He really doesn't understand.

When our oldest daughter was diagnosed as having SPD (tactile defensiveness), I started reading The Out-Of-Sync Child & saw myself all over the pages. I don't have the same fight or flight issues BabyGirl does, so at first I thought it was just slight similarities. But the more I look into this, the more I'm convinced I also have SPD if even in a more mild form.

It's nice to have something to contribute all this too, but I'm still not sure what to do about it. I'm trying BabyGirl's Sensory Diet, but I'm worried that it's too late as my neurological system is already fully formed.

I guess I should add that while typing this, I rolled too far back on the exercise ball I'm sitting on, fell in the floor, & pulled the keyboard tray out onto my leg. I feel a bit like Charlie Brown....Good Grief.

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.

More Baby Steps

Went to see Miss Emily yesterday. Spent a good deal of time talking about bed time (could just be behavioral...yippee) and the GFCF diet. Miss Emily said not to go cold turkey with gluten & wheat. She compared it to an addiction & said that would be too hard on BabyGirl's system.

She also added blowing to the at home sensory diet. Blowing bubbles, pinwheels (which of course I couldn't find yesterday at the store), cotton balls around with a straw...BabyGirl loves the idea.

We picked up Almond milk (which so far BabyGirl will have none of) and GF mac & cheese (yes, I know... cheese=casein & therefore defeats half the purpose, but we're starting small, remember?) at the local health food store.

We're going back to see Miss Emily on Tuesday. Since I still haven't heard from the school's OT, I'm going to up BabyGirl's visits to Miss Emily to once a week. BabyGirl is thrilled as is Miss Emily. They love each other. I am so glad!

Baby Steps

First of all, do you see that? That is my daughter Sunday morning wearing clothes in the house while watching TV. She even has her hair pulled up (a big no-no very recently). She just came out of her room fully dressed, wearing jewelry, asking for a ponytail!!

How this child doesn't fall off the bed in her sleep is beyond me. The picture is from one of the many nights she refused to sleep in her own bed. The issue comes and goes now. Most nights she starts going to bed around 8 o'clock & finally accomplishes the task around 9 o'clock. Then she'll lay in bed & sing until she falls asleep. I'm trying to be less rigid about it. Even if she doesn't give up & fall asleep until 10 o'clock, that's still 9 hours of sleep. I'd rather she get more, but it's not like she's really sleep deprived.

I'm still mulling over the GF/CF diet. One of the mothers on the SPD message board said she found it kind of funny that I consider this a huge step. I thought cutting two of the major food groups out of my child's diet is pretty major. She meant because they've been doing it do long it's second nature.

Today is picture day at school. BabyGirl picked out a red plaid skort & long sleeve turtle neck top that had belonged to Art's Syd. I've always loved the outfit, but BabyGirl's never worn it more than 10 minutes at a time & never out of the house. She even put on knee socks. She hasn't willingly worn a pair of socks in months. Today she was thrilled to put it all on...until it came time to put on her shoes.

She wanted to wear an old pair of black Mary Janes that are a 9 1/2. She's been wearing a pair of size 11 loafers for the past 4 months or so. She really needs about a 10 1/2. When the Mary Janes were too tight she wanted to change her entire outfit. It was time to go out the door, so I wouldn't let her change. The waterworks began & I felt bad sending her to school crying, but if we'd have gone back in her room to change it would have taken a good 20 minutes & ended in a total meltdown.

Husband said she took off the socks once she got to school, but it wasn't the normal screaming strip-down in the truck on the way.

Oh, and the jeans I bought that she hated...she tried them on again Sunday & decided they're OK. They've been washed & are waiting in the drawer for her to wear them out. Keep your fingers crossed.

Baby steps.

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!

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.

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!

The never ending case of strep & a singing snail.

Today was BabyGirl's 6th day on Omnicef for her strep throat. She's still running a fever. I called the NP this morning & she phoned in a new script for us. BabyGirl is now on Zithromax & I'm hoping it kicks this mess by tomorrow night.

The OT was at school Friday to see BabyGirl. BabyGirl was home sick. The OT will be back this Friday. We only have one day left to get rid of this fever. I thought we were in the clear today, but at bed time the poor kid was back at 101. I decided to forgo her night time dose of Motrin in the hopes that the fever will either kill the strep or break in the night. The school has sent home notices asking parents to keep kids home until they've been fever free for 24 hours. So she'll be home again tomorrow making it the 5th day in a row.

I popped in to ask about her home work on Monday. Mrs.G said there wasn't any from Friday or Monday. Friday is their test day & they spent last week in Acheivement testing (she also missed Tuesday of last week, so that's 2 days of Acheivement tests to make up for). Monday was the 100th day of school, so it was spent doing *special* things. Today I picked up the work from yesterday & today...then we spent 4 hours doing her make-up work. 4 hours! She's in first grade! But then I guess doing what it normally takes 2 full days to do in 4 hours isn't bad.

I'm really getting antsy about her seeing the OT. It's only an informal evaluation and that makes me a tad irritated too. I want to get the ball rolling. I want to jump into this thing head first. I want answers & treatments...and I want it all now.

When I was a little girl we had a record with a song on it sung by a snail:
Have patience,
Have patience,
Don't be in such a hurry.
When you get impatient,
You'll only start to worry.
Remeber, remember that God is patient too,
And think of all the times when others have to wait on you.

I feel like I'm singing it at double the speed it was written for. I need to settle down & do like the song says.

When a step forward feels like a step back.

This blog is mainly for me. I know, I know, I invited you all along for the ride, but the real reason I'm here is to organize my racing thoughts. I need a place to center all the chaos swarming around me. I need that badly.

The doctor's appointment did not go as planned. I should be clear & tell you exactly how I saw it all going in my mind. It's actually very ridiculous, but I have a penchant for the melodramatic. Have you ever seen A Christmas Story? You know the scene where Ralphie writes the essay about the Red Ryder B.B. gun for school? When he turns it in he has a delusion that the teacher weeps over the beauty of it all & his classmates lift him up on their shoulders in celebration. Yeah, I'm a little like that.

My thoughts didn't run quite that high, but it was pretty bad. I saw myself eloquently explaining all BabyGirl's issues while Doc sat in rapt attention and the light bulb coming on over his head when I uttered the words Sensory Processing Disorder. He would then immediately make an appointment with the best OT in the area for an evaluation & demand it be no later than tomorrow. He would be totally on board with my theory & BabyGirl would begin her therapy & road to recovery tomorrow bright & early.

Instead it went more like this:
Doc: So, how are you ladies today?
Me: Well...we're OK.
Doc: What seems to be the problem?
Me: We think BabyGirl may have a Sensory Processing Disorder.
Doc: (after a moment long slightly confused stare) I don't think I've ever heard of that.

I attempted to explain it to him, but I think my description fell pretty short. He wasn't real keen on the idea of sending her to an Occupational Therapist immediately...it all sounds a bit fishy to him. I totally understand the feeling. It sounded fishy to me when I first began investigating it.

Before you start sending him hate mail (which I'm sure you want to do right now), the man is a good doctor. He's caring & conscientious. He did not blow the theory off, he's just never heard of it. Kind of hard to diagnose someone with a completely unknown (to you) disorder.

He is sending us to Riley's Children's Hospital in Indy soon. They're going to set up the appointment for us. Doc wants BabyGirl seen by specialists to rule out any skin conditions or other issues. He's right. That's exactly what needs to happen. I know that....it's just not what I wanted to happen. It's not the pat answer I had in my mind. He's not ruling out SPD, but he does want to send her somewhere where she'll be treated completely.

In the meantime, since my gut is still saying this isn't a behavioral problem and it's not an allergy, I plan on calling the principal in the morning to ask him if the school system has an OT. If so I want to talk to him/her about BabyGirl. There's no reason we can't pursue both ideas at once. I'd hate to put the idea of SPD on the back burner only to run the gauntlet medically to find nothing when we could have been working all along.

I came home ill, exhausted, disappointed, & depressed. Art gave me permission to cry with her post from this morning, and Grace gave me very sound & loving advice via email. I read both exactly when I need to read them & got out of them exactly what I needed to get.

Now I think I'll call it a night...and leave the worry for another day.

When guilt rears it's ugly head

Thank you all for your prayers & well wishes. And specifically to Ang, please do not feel guilty about not mentioning this earlier. This has been staring me in the face for years & I've only just accepted it.

I'm dealing with some pretty serious guilt at the moment. Husband has been trying to convince me that BabyGirl does really "itch" for quite a while. I refused to believe it because she has such a penchant for drama. He's bought her new shoes after I said not to, he's changed her clothes half a dozen times after I said not to, he's coddled & tried to manipulate her into dressing when I've taken a, "You will do as I say, when I say it," stance. I've always seen this as a control issue & not an actual condition she may be suffering from. It always reeked of manipulation on her part to me....and I'm miserable about that.

Others have mentioned to me in the past that maybe she's just very sensitive to clothing textures. But since we've tried nearly everything to get her dressed and bought numerous different types of underpants, socks, shoes, & clothes, I never took it seriously.

Yesterday I read treatment needs to begin before the child turns 7 & the nervous system is still malleable. That horrified me. 7?! If I had waited a few more months...ended out the school year...it would have been too late? Are we pushing it now?

And I'm struggling with how much to tell people. Part of me wants to scream it from the roof tops, "She has a disorder!! We can treat this!!" The other part of me wants to keep quiet until we have an actual medical diagnosis (regardless that my heart & mind tell me this is it). There are certain people we know who are gloom & doom...I don't want them saying anything negative near BabyGirl. Unfortunately they don't seem to understand that kids are listening even when you think they aren't. But at the same time, these people need to know because of their relationship to us.

Earlier this week I told her I was getting a book that might help us figure out why she itches & is so hot all the time. I told her there are kids who's brains tell them their bodies feel things differently than most people. "You have these little things all over your body called nerves. They're what feel everything for you. Your nerves send messages to your brain & your brain tells you how things feel. We think, for some reason, your brain tells you clothes are itchy when they really aren't & that lotion is hot." She took it all very well. Her first response was, "Is it like a sickness, Mommy?" I said, "No Baby. You're not sick. Your brain just works differently than everyone else's. We're going to see Dr. about it & there are people who can help you learn to not be so itchy." She was a little worried about shots & medicine, but I told her I've never seen where medicine helps this problem (I've never seen anything about meds in regards to SPD, and I've looked).