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.

Crocs Rock!!

Thank you to Crocs for delivering me from the living hell that is shoe shopping with BabyGirl. The child will not wear socks. I worry about frostbite on her toes. Seriously. The warm fluffy liner in these shoes eases my mind greatly.

A few weeks ago we went shoe shopping after the mother of all melt downs involving her, Husband, and myself. She finally settled on a pair of black leather Mary Janes a full size too big (she can't stand shoes to be snug or to even fit properly) and way too flimsy. A few days ago she decided she doesn't like them (it's a daily battle sometimes). I would rather her wear something with a bit of substance so her feet don't freeze this winter.

While we were shopping for them, we found these. She wasn't thrilled with them at the time, but said if we didn't find anything she liked better, they'd do. Yesterday I went back & picked them up (armed with my 10% off coupon Husband found in the phone book!).

She LOVES them. She's (get this) worn them around the house since last night! The child never wears shoes willingly & she's wearing these!! Say what you will about the lack of style of Crocs (I think they're cute & almost bought myself a new pair), but I love them & will be forever grateful.

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!

Laxing off a bit

Samantha asked (so very long ago) if I was sticking to BabyGirl's sensory diet of if we were relaxing with it.

To be honest, I've slacked off quite a bit in my enforcement of it. BabyGirl does many of the stuff on her own because she enjoys it, but I don't push her quiet like I did in the beginning.

I think the sensory diet was a life saver for us. I cannot imagine still dealing with the daily battles we had back in January. Since starting the sensory diet BabyGirl's clothing issues have decreased drastically. She will wear a greater variety of clothing now than she has since the beginning of Kindergarten. Where we were limited to 2 pairs of pants & 2 shirt for a while, she now wears at least 4 pairs of pants, most of her shirts, and with the weather warming up she's back in her dresses & skirts.

Since we tried the blindfold experiment, she's picked out a new kind of favorite panties. She still limits herself to one particular brand & style, but I think most people do that. I'm OK with that since I can get more of them. It was the single pair of underpants I had a major issue with. In fact, Friday I bought her another pack of the kind she now prefers so she has 6 pairs to choose from. That seems like such a luxury to me! (Granted there are probably 15 pairs in her drawer she doesn't want to wear, but at least 10 of them are old enough to need to be replaced anyway.)

I think the weighted blanket has helped her the most. Since she started sleeping with it she's been calmer & much more tolerant of texture. We rarely brush anymore & the joint compression is an occasional thing (once a day, maybe).

Now our biggest issue is the learned behaviors SPD has caused. For a long time sheets itched so she would throw a fit at bed time. Now the sheets don't bother her, but she still doesn't go to bed easily.

I'm trying to learn what battles are worth fighting. There's a fine line with her between a sensory problem & a behavioral problem. What can start off as behavioral can quickly become sensory. If she refuses to go to bed & an argument ensues, that can quickly escalate into "itching" and a melt-down over bedding. So picking my battles is far from easy.

I'm glad summer is coming because simply being outdoors is a great feast for her senses. The more she does on her own (swinging, sliding, bike riding, running, playing, bouncing), the less I have to remind her to do. I think that may also explain why summertime was always easier for her. In the winter she becomes too sedentary & that contributes to her issues.

So, for the moment, most of her Sensory Diet is in her hands, but I know it's worked for us!

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.

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!!

To sleep, to sleep, perchance to dream

Good bed time tonight!! I tucked her in, laid with her for a few minutes, then left...and she did not follow crying about her sheets, complaining that she cannot possibly sleep, begging me to come back to bed. Such sweet silence.

And for those of you who don't know, BabyGirl got her specs on Friday. She's cute as a bug in a rug in them. "The kids all said I look just like a teacher." Precious.

Now if only Bitsy would sleep......

Backwards Steps

Yesterday we had the first full blown, screaming, crying, fighting, crazed meltdown BabyGirl's had since we started therapy. We needed to go to town & she didn't want to go. She wouldn't get dressed & the rest was history. I'd nearly forgotten how bad things could get. Don't have to worry about forgetting that for a while.

Bed time is still a battle...I'm not seeing much difference with the cut back in her diet. I'll try it a bit longer, but if I don't see some major changes soon, I'm not going to stick with it. There's not much point in going through the trouble & expense if it's not going to help.

At this point I'm pretty desperate for summer to get here. These kids need a dry yard & somewhere to run. When it is dry, it's been too cold to take Bitsy out. The others aren't old enough to be turn loose on their own yet...If only we had a fenced in play yard.

The picture is a collection of things we use in her sensory diet. I thought I'd share. She goes from loving her stuff to wanting nothing at all to do with it. Sometimes it's hard keeping her interested. Last night I let her take a bubble bath. I gave her a straw to blow bubbles in the tub with, a bottle of bubble solution to blow bubbles with, and a pinwheel to blow on. Afterwards, she played with the thera-putty while I cleaned up a mess the boys made in her room.

Then she fell apart at bed time because she wanted to watch Nancy Drew. Ugh.

An Essay by BabyGirl, age 6 (nearly 7)

This morning was not exactly wonderful. BabyGirl woke up too early on the wrong side of the bed. Grumpy pretty much sums it all up. She wore the same clothes to school today that she wore yesterday. I really need a way to convince her that jeans are all purpose & can be worn with multiple different tops. This is not a matched set.

Yesterday she brought home an essay she wrote after her field trip earlier this month. The first & second grade classes went to see Henry & Mudge in the big town to our south. This is it verbatim:

Henr and Mug

There are three reascus why I had fun on out field trip. Frist, we had fun. I got to play tic-tac-toe. Next, we ate lunch at The Center. I got to meat nou people. Finelly, we went to Victary Theater and Harey And Mudge. it was funny. In conclusion, these are the resascus why I had fun.

I love it! I'm sure there are old essays of mine hidden around here somewhere that look very similar.

One thing I've noticed since we started therapy is that her hand writing has improved by leaps & bounds. BabyGirl's penmanship wasn't the best in the world. Most of the time it was hardly legible. Now it's beautiful, especially for a 6 year old. I don't know if she's suddenly being more careful or if this is a result of the therapy. I'll have to ask Miss Emily what she thinks.

One small step for fashion, one giant step for BabyGirl!

This morning my daughter happily left the house in NEW BLUE JEANS and a NEW SHIRT ! And that's all I have to say about that.

OT Tuesday

I took BabyGirl to "play" with Miss Emily this morning. She came home armed with new sensory "toys." She has a tub of bright blue Thera-putty & a long green Thera-band. The putty is like heavy duty Silly-Putty. I remember G'pa M&M having a tub of it when he cut his finger tip off many years ago. Miss Emily hid things in the putty for her to find...small coins, marbles, etc. The band is like one of those big exercise elastic bands for her to stretch against. She loves them!



She's also really enjoying the blowing part of her sensory diet. Bubbles as OT is the best thing ever!

Last night I made her a "fidget tub." I filled an old Cool-Whip tub with small odds & ends in different sizes, shapes, and textures. There are small shaped erasers, buttons, pesos, marbles, femo beads, wooden beads, tiny figurines, dice, and little toys, then it's all buried in nearly a pound of dry navy beans. It gives her lots of things to feel & sort, weight on her hands, and lots of movement. She played with it for nearly an hour last night while I put the boys to bed, settled Bitsy down for the night & took my shower. Bed time wasn't the issue last night that it's been for the past few weeks. I'm hoping the fidgets are what helped & it wasn't just a "good night."

While she was engrossed in her fidgets last night, I sat down on the couch & played with her. As we were playing I asked her what she thought about having SPD. She said, "It's GREAT, Mom! I love it!" I was shocked. Why would she love being so uncomfortable & miserable? What's to love about melting downs and falling apart over a pair of panties? "I get to play with cool toys, have lots of fun, jump on my trampoline, and go to therapy. Therapy is REALLY fun! I love going there." I'd never thought of it that way. To her it's become less & less about what she can't tolerate and more about what she gets to do. She amazes me continually.

She left me alone on the couch with her fidgets for a bit & I sat the bowl on my lap to play by myself. It was surprisingly relaxing. I buried my hand under all the beans & toys just to see what it does for her. The pressure of the beans on my hand felt so calming. It's hard to explain. I would love to have that kind of weight to curl up under. Yet again, like mother like daughter. When she came back, I had her try it. She loved it too.


Miss Emily suggested a weighted blanket one of the first times we saw her. BabyGirl wanted no part of it thinking it would make her hot. After feeling the weight of the beans on her hands, now she wants me to make her a weighted blanket. I'm trying to work it out in my head so I can start working on one this weekend. I figure if she doesn't like it, I'll use it myself!



On the diet front, while not going full out GFCF (Miss Emily said that would not be fun as BabyGirl would probably go through full blown withdrawls if gluten & casein are her problem), we have cut back quite a bit on both. BabyGirl is now drinking about 2 small cups of milk a day as opposed to the 4-6 full tumblers she was drinking a day. She's eating granola bars (while not totally gluten free, much lower in gluten than her old snacks), more fruit, and carrot sticks for snack. Dinner is still pretty much the same, but I'm more aware of how much dairy & wheat is in what she eats & try to cut back a bit.



There's not a drastic change, but she does seem to be improving a bit. We'll keep it up & see how it goes. I like the idea of cutting back while not entirely cutting out. It feels like a much safer avenue to me. If I see a drastic change, we may go futher down this road.



We'll go see Miss Emily again next Tuesday. Perhaps OT Tuesdays will become a regular thing around here.

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.

Possible New Path

The idea of having a child with special needs, especially needs that revolved around a specific diet, has always terrified me.  I'm not sure why it seems so very daunting, but it does.  The thought of having to over analyze every bite of food my child ingests is overwhelming.  As though we don't have enough to worry about as it stands.

 

That may very well be something we're facing.  I've been reading a lot of information on Gluten Free Casein Free diets for children with SPD & related disorders.  Some of the parents on the Yahoo SPD network swear by the diet.  I've read of kids who've done a 180 once the dairy (Casein) & wheat (Gluten...also includes Rye & Barley) have been removed from their diets.

 

I have to say I'm skeptical as the jury is still out on the studies that have been done.  But it might be worth a shot.  My biggest concern is that BabyGirl sustains herselfs almost entirely on wheat & dairy products.  I joke that my kids are on the Anti-Adkins Diet...little meat, few veggies (depending on the child), lots & lots & lots of carbs.  One mother on the SPD board suggested BabyGirl's predilection for dairy & wheat may be a symtom of intolerance as though her body is craving what it cannot process correctly.

 

So now I have to decided just how far to go with this.  Do we pull her off dairy & wheat all together?  Do we phase them out gradually?  Do we phase out one or both?  Do I thumb my nose at the idea all together and stuff her full of milk shakes & girl scout cookies?

 

As Inkling would say, "Oy."

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!

Worry not about tomorrow....

As usual I was worried about nothing. BabyGirl not only got up & got dressed in the dreaded red shirt willingly (thanks to a few sprays of Bath & Body Works Clean Cotton Body Spray), but she came home & begged me to wash the shirt tonight so she can wear it again tomorrow!

When she came home from school yesterday, the first thing she did was apologize to me for her melt-down that morning. An absolute first for her. She's apologized if we discussed it later, but this was totally unprovoked. Later I let her decorate her lunch sack with markers, sparkly glue, and stamps to take on the field trip today. After that she was very excited about going.

Sometimes her Dr.Jekyll & Mr.Hyde act makes me dizzy. I used to repeat the nursery rhyme to her:
There once was a girl who had a curl,
Right down the middle of her forehead.
When she was good she was very good,
But when she was bad she was horrid.

I wonder if the girl with the curl had SPD.

I'm tired.

This morning was bad.  We haven't had a truly bad morning in nearly 2 weeks.  Today was a bad one.  She didn't want to eat breakfast at the kitchen table.  She wanted to watch TV while she ate.  I don't usually allow them to watch cartoons during the time they're supposed to be getting ready, but this morning, I let her.  I was feeding Bitsy, arguing with #1 Son (who never wants to eat anything), trying to get B.B. to stop screaming, "Mermaid Man & Barnicle Boy Unite!", and trying to talk BabyGirl into getting ready for school happily.  It all fell apart.

 

She spent most of the morning crying & refusing to do the simplest of tasks.  #1 Son was too busy playing to get ready.  B.B. would not stay out of the way long enough for us to get anything accomplished.  By the time BabyGirl had to get dressed, she was in a state of emotional turmoil & I was nearing the edge.  In the end we both snapped.  I had to wrestle her into her clothes & Husband had to take her to school kicking & screaming.  I had almost forgotten just how bad things could get.

 

When he got home, Husband said she was still crying & saying she didn't want to go to school when he left.  I told him she would be fine once she was in the room with her classmates...she always is. 

 

Tomorrow is her class field trip.  They're going to the "big city" to see a play.  She's never been to a play before & I really think she's going to love it...but there's a problem.  The teacher sent home a note saying all the kids are to wear their red "Say Nope to Dope" T-shirts from Red Ribbon Week.  She hates the shirt.  She's never worn it since the day they made them put them on at school for the school group picture.  It isn't one of the 3 BabyGirl approved t-shirts.  Daddy suggested I let her wear another shirt to school & have her change in the bathroom before class.  She was not happy with that idea, "It's not allowed, Mom!  I have to wear the shirt to school.  My teacher said so!"  I tried to explain that Mrs.G would be OK with her not wearing it in our van on the way to the school, but she's having no part of it.

 

Husband wants to let her stay home if it's an issue in the morning.  His reasoning is that she won't be missing any actual learning time.  I understand that, but I'd hate for her to miss out on something I really think she'll enjoy because of a red t-shirt.  Once she's with her peers, the shirt will not be an issues...and I understand the need to dress all the kids alike.  I'd hate to have her wear something other than what they're asking & have her get lost in a crowd.  I really am torn.

 

On top of this, Husband asked me if she's been doing her boucing & jumping therapy every day.  To be honest, no she hasn't.  I feel like I spend all my time trying to make her do something.  She doesn't get off the bus until 4 o'clock.  By the time I brush her (therapy), she has a snack, does her homework, takes her bath, gets brushed again, watches a little TV or plays for a little while, eats her dinner, & gets brushed again, it's time for bed.  When in all this does she get time to just be a little girl?  I understand the need for the therapy, but I think it's wearing on both of us. 

 

 It doesn't help that I'm doing this all on my own.  Nights are hard on us all.  Husband is at work.  I'm dealing with 3 kids & a very busy creeper (as Bitsy doesn't really qualify as an infant any longer).  I don't seem to have time to get it all done anymore.  The days seem long & empty until she gets off the bus, then it's chaos until 9 at night. 

 

Until last night, bedtime has been a struggle with her.  She doesn't like she sheets, she's too hot, she can't sleep, she wants to sleep in our bed because our sheets are better.  I've changed her sheets, borrowed a quilt from Busha, put her to bed earlier, cuddled with her, played music for her, let her go to sleep in my bed only to move her out once she's asleep.  Yesterday I stripped my bed, washed the bedding & put it all on her bed.  For the first time in at least a week, she went to bed willingly and stayed in her bed all night long.

 

Then this morning it all went to pot.

 

I'd like to curl up & cry.

My four eyed baby.

BabyGirl is nearsighted. Apparently this is uncommon in six year olds. Most kids her age are farsighted. And the way I understand it, she's only near sighted in her right eye. It's about 20/40 or 20/50. So glasses it is. Mainly for board work at school. Her glasses will be exactly like mine (the frames in the pic are the right shape, wrong color. Ours are burgundy). Illinois Medicaid (while I am eternally grateful for it) needs to refine it's optomical guidelines. They had 2 frames to choose from. These & a flimsy wire frame. And they take a full month to come in!

She's not particularly happy about the idea of wearing them...or at least she wasn't until it came time to tell people about them. "They look really cute on me, Pa." She's right, they are adorable!

Oh, and she doesn't like the new jeans I bought. This could get bad....

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!

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.

Sick & Tired

It's a sad state of affairs when you're relieved that your child doesn't feel great. This is the first time in 2 weeks we haven't had some kind of bed time drama. While I do love that I'm getting to spend some much needed time with BabyGirl in the evening, it is a tad difficult sometimes.

Post bedtime is my chance to decompress. I do the last of my chores, shower, pick up the house, read, eat, watch something other than Spongebob, talk to Art without interruption, & enjoy the peace. Most nights I also have to wrangle B.B. back into bed and feed & settle Bitsy in for the evening. When BabyGirl gets dramatic & I have to lay with her, it can make the rest of that next to impossible.

Last night was a night when I needed that down time. Badly. Instead I had a fight with BabyGirl, a fight with B.B., no shower, and a crying Bitsy to take care of. It was not pleasant. I wasn't feeling well (still not feeling great), and had no patience to spare.

Today, #1 Son came home from school & said BabyGirl didn't want to play at recess because she was "sick." When she came home I asked her about it. She said she just didn't feel very good. By bedtime she was dragging a bit...it was bad enough that she not only put on her night gown and went to bed at 7:30 without a fight, but she wanted her blanket on. This is the girl who never wants to wear clothes of any kind & flat refuses to cover up with anything heavier than a sheet no matter how cold it is (19 at the moment).

Guess I should take a cue from her & hit the sack. I just hope she feels better tomorrow. She's already missed one day this week due to a bad cold...and I think tomorrow is when the OT is going to be at her school.

Get behind me, Google...Updated

Grace, I took your advice & stayed away from the Internet...at least as far as SPD goes. I did read blogs, but did no research & did not once Google anything about sensory issues. It helped a great deal.

I have come to a conclusion. I need to open my mind up to other possibilities. I need to let go of my death grip on SPD. That may very well be the problem. I still think it is the problem. But I need to accept the fact that it may not be the only problem. There may be an underlying cause. If I don't come to terms with this now, I could be in for a very hard time later on.

I called the Special Ed coordinator yesterday at the suggestion of BabyGirl's principal. I had to leave a voice mail & haven't heard back from her yet. If she doesn't call back by this afternoon, I'll try again. I also haven't heard back from Doc's office about Riley's. That's two calls to make.

After that, I promise to either sew something or read a nice piece of fiction having nothing at all to do with child development.

*****

Updated at 3:24 pm- I called the Special Ed Coordinator at the school. She was in meetings all day yesterday & couldn't get back to me. She is sending the OT to do an informal evaluation of BabyGirl & then they'll get ahold of me. I explained a little to her about the situation because I'm not sure how much BabyGirl feels comfortable telling people right now.

After that, Doc's office called me. They talked to Riley's about us seeing a doctor in Evansville (which is an hour & a half from us) as opposed to driving the three hours to Indianapolis. Riley's said there was no sense in BabyGirl seeing a doctor until she'd been tested. They want her to see the school's OT. After that they'll determine if more testing is needed & possibly send us to Easter Seals. I'm assuming this means Riley's wants to explore SPD before they start testing for medical problems.

And just so you know, I've been reading Lady Susan by Jane Austen all day. If you click on the link, you can read along. Pretty nifty.

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.

The Lighter Side

Since BabyGirl know what's going on, I think she's attempting to use it to her advantage. Saturday I heard her tell one of the boys, "You can't do that to me. It makes me itch because God made my brain different from everyone else's!"

In researching treatments, I've found a lot of parents who keep a small exercise trampoline in the house for their kids. I mentioned this to Husband yesterday on the way home from church. He took the boys to town to bowl with the church & picked one up at Wal-Mart. I really have no idea if this is something appropriate for BabyGirl's issues (mainly what I read was it's use for kids with sensory seeking behaviors), but I figured if he was on board and willing to help, go for it. It's not like it won't get use around here...and it may save my couch. When the FarmHands get wound up I can send them to bounce. It's nice (all except for the "GET OFF!! IT'S MY TURN!! I DIDN'T EVEN GET TO JUMP!!" But that's what they make kitchen timers for).

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).

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.