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!