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!!

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!

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)?

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.

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.

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.