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.

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!

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.

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.