Snoezelen Room

So Rory...

In a constant effort to make our home as comfortable as possible and "safe" for Rory as possible, we are thinking of turning a portion of our finished basement in to a "Snoezelen Room."

Snoezelen comes from 2 Dutch words, meaning "sniffling" and "to doze/snooze." Snoezelen rooms are "controlled multisensory environments." They are much more common in Europe. Basically, they are "calm" rooms that appeal to multiple senses at once. They use a lot of light therapy, white noise, comfy spaces, even scent therapy at times.

Rory had a great response to the CME Room at therapy last week. To be honest, I loved the CME room myself!! :) I can only imagine the benefit having a small one in our house would be for both her and Trace. Who doesn't need a safe space, designed specifically to help you calm down, relax and quiet your mind? With both kids facing major life changes (kindergarten anyone?!) in the next 3 years...yep, seems like a good idea to me. (Also, sidebar, if you are ever looking for me once we install this...check the corner with the fluffiest bed near a bubble tube. ;o))

Here's my dilemma...CME Room equipment is expensive. I mean EXPENSIVE. Rory was particularly drawn to the bubble towers in the CME room...

(via 1047.connectradiio.ca)

Beautiful, right?

Ugh.

Anywhere from $350 to $1000. Per. Column. YIKES. Even table top ones will run you a couple hundred...

I've found some smaller things, like a lava lamp, speakers that respond to music with light/water (that'd be good with quiet classical music, I think), a small fountain...that would get us started on the visual sensory elements.

Auditory elements are easy...a white noise machine and a small CD player to play classical music. Easy peasy.

Tactile elements are up next...there has to be comfy places for her to relax and recline. The CME Room at therapy has round platforms, cushioned entirely, with white netting encasing it. I don't think that'd be too hard to make...my dad is pretty handy. I think we could cut a piece of plywood into an appropriate size (Small is good, because it encourages comfort and implies safety) and just put a couple wooden blocks on the bottom for a little height. You can order round mattress that aren't very thick. Then we could add foam padding around the wooden base and "upholster" the whole thing in a comfy fabric...

Holy moly. I just worked that out right on my blog. Well that will be my dad's next project...after he's done with their kitchen renovation!

As far as the tulle "casing" goes...I can make that like a boss. Gimme a bolt of white tulle and a hula hoop, a hot glue gun and a couple episodes of Grey's and BAM. Done!

Oh how I wish these kinds of things were covered by insurance. But no. I am a hard working, contributing member of society who faithfully pays my taxes. My husband is the same. It's extremely frustrating...

I'm rambling, I know. It's late and I'm tired. But I'm motivated. I'm motivated to give my kiddo the tools she needs to lead a happy life to the best of her abilities.

Rory update.

Time for a Rory update...

We had therapy last week with her totally awesome and in high demand (BOO! YAY! BOO!) therapist, Miss Angela. Angela is phenomenal. She has a jammed schedule and works her magic to get Rory in once a month (we're on the cancellation list for any available appointment). I know a lot of people would get frustrated with once a month appointments but I'm choosing to be so grateful Rory likes her and is open with her. Angela and Rory have a great rapport already and I'm not switching again. I know if we work diligently on the things she's given us each appointment through out the month, it will be worth it. Eventually, her schedule will mesh with ours and we will get in to 2x a month or even more. I know it, I pray for it and I trust that it will happen.

This was our second session. Our behavioral health facility is brand new and beautiful. Half of the entire building is different therapist's offices for individual sessions. There are probably 15-20 offices for therapists of all kinds: men, women, young, old...there's someone for everyone, honestly. The other half of the building is home to "units" for different behavioral disorders. There's ADHD centered rooms, sleep disorders, etc. The best is a HUGE autism unit. There's a calm room, 4 therapist offices, special bathrooms and a giant playroom with Autism appropriate areas. Light tunnel, sensory walls, a swing, big soft play sets, a 5 foot by 5 foot ball pit...it's really great.

Last time we were in, Angela showed Rory the autism unit and promised we'd use it at an appointment if no one else was in the unit. Well this appointment it was free! Rory got to play while she chatted with Angela and it was really cool.

They used the ball pit a lot. Sensory wise, it was calming to Rory. She liked sinking down below the balls. (A lot of sensory kids like a little pressure or weight on them, they find it calming. Rory definitely likes several blankets or pillows on her)

The balls were 4 colors: yellow, blue, green and red. Angela used the balls to help Rory identify and put a color with each of her biggest fears.

Paraphrasing her words/reasoning:
Yellow, for Rory, represented being happy because the sun in yellow and Rory is happy when it's sunny. (Not a fear, but a goal.)

Red is people being angry or yelling at her.

Blue is people dying/going away forever because that makes her cry and tears are water and water is blue.

Green is going bald. She's not afraid of bald people but she's afraid of going bald and not having any hair because people would laugh at her.


When she was talking about going bald, I excused myself and cried in the bathroom for a few minutes. Imagine your child living with the fear of having no hair. I can't explain to her that going bald is just part of having a childhood disease like cancer and that people understand it. Because they don't. When I see a kiddo with a bald head, I immediately associate it with cancer and share a smile or hello with them. When you see a kid with a patchy head, pull spots galore...well the judgments are a little different. A kid with trich's baldness/hair loss looks very different from childhood cancer hair loss. It's kinda scary at times, honestly. Very different. Very hard to explain. Very difficult for me to accept, honestly. I'm not a very appearance oriented mom. I love cute outfits but I had to give up control of Rory's hairstyles and accessories long ago. She hasn't successfully worn a bow or barrette in her hair for longer than 20 minutes in 3 years. She can't handle her hair being braided or even put in a ponytail. She has strong opinions and inclinations when it comes to what to wear and what feels good that day. I've accepted it and I'm okay with it. In fact, I look forward to seeing what Rory wants to wear each day. She's 4 and it's a-okay to be "Fancy Nancy" every day. But the looks, the judgement at the grocery store, the head shakes, the flat out statements...ugh. It can be really hard to be mom of a kiddo with sensory issues sometimes.

Back to our session...

Angela worked with Rory on some coping mechanisms to calm her down when she feels the anger or worries bubble up in her belly. They spent a long time practicing angel wings (Deep, consistent breathing with repetitive arm motions) After that, Angela took her in the calm and quiet room.

That room was awesome. I wanted to lay down in there!! They had these individual "bed" type things with white tulle hanging from the ceiling, making like little tents. There was a white noise machine, cool air blowing through, light up headboards with LED lights that changed colors and patterns, LED lights in the ceiling to focus on and floor to ceiling bubble tubes with a very calming bubbly sound as bubbles traveled up and down the tube and the tubes changed colors softly. It was a great room! Rory laid down in one pod and focused on the bubbler for a while, doing her angel wings.

We are thinking about investing in a lot of those things to help her calm down at night or when she gets worked up...


All in all, it was a great session! I'm thrilled with Angela and grateful to have someone who takes us seriously and is willling to work through so much with us now. She specifically said we need to amp up our anti-anxiety efforts after Christmas in preparation for Kindergarten, which I. Definitely. Agree. With.

Another day closer towards Rory leading a normal life...

Drip Drip Drop.

Living with my daughter is like constantly anticipating a rain storm.

When I was a little girl and the skies were overcast, I'd stand in the front yard of my grandparents' house and try to throw sticks in to the sky to make it rain. I'd hurl those silly sticks as hard as I could, convinced I could pierce the cloud and bring the rain myself. How silly but how fun those moments were for me.

As a parent, I feel like I'm constantly hiding every stick in sight and protect my storm cloud with every ounce of my energy.

If Trace takes the purple plate at lunch, will that be the stick that pierces our cloud? If Rory's blanket is missing, if a doll shoe has gone in to hiding in the disaster that is her room, if she can't find a nightie she was thinking about all day at school...is that the stick that finally pierces the cloud?

Somedays, the skies in our house go from perfectly sunny with big fluffy Toy Story clouds and a crystal clear blue horizon to a torrential Florida July afternoon rainstorm with no warning. Other days, the rain comes slowly...drip drip drip drip...faster and more intense until finally the dam breaks and out pours the rain.

My little storm cloud. My barely 4 foot tall, 35 pound little girl...she can bring the rain like no other. And I'm continually offering everyone around us an umbrella while simultaneously trying to catch all the rain drops with my bare hands.

Have you ever stood in the doorway, knowing you are about to walk in to a down pour with no umbrella, not even a hood? There are moments in my life where that is what I feel like. I can hear that first scream from Rory's tiny, pink, angel kiss lips and know. I just know. Here comes the rain.

Have you ever tried to catch the rain? Tried to hold out your hands and capture the drops, study them and learn from them? It's practically impossible. They rush through your fingers, on to the ground, spilling over your whole world, bathing everything in sight.

That is my life. On Rory's bad days, her moods and issue swirl around me so quickly, so incredibly fast that I am caught up in it and my entire world becomes Rory's world. I become desperate, offering punishments, alternatives, solutions, options until one of gets too tired, too emotional, too worn out to continue.

The difference between Rory and other kids? If she sets her mind on something, she will not stop until the gets her way. Put her in a room, she'll kick the wall or door until she falls asleep, you take her out or she kicks a hole. Give her a spanking, she'll laugh manically in your face. Take away a toy, she'll scream at the top of her lungs until the whole neighborhood can hear or she falls asleep.

On her worst days, her outbursts are truly like cloud burst. You can do nothing but stand back and watch the rain fall around you. How do you stop a rainstorm? How do you stop Rory?

You can't. You just get wet.

She's my daughter.

An open letter to the moms who judge me,

My daughter is Rory. She is 4 years and 1 month old. She weighs in at a whopping 39 lbs and stands 41 inches tall. She had beautiful greenish brown eyes and an adorable brown bob. She likes her toe nails painted alternating colors and doesn't like finger nail polish unless it's sparkly. She prefers butter on her toast and her juice in a cup with something Disney printed on it. Rory is obsessed with dolls, especially her American Girl Rory Dolly, playing on the swing set and doing craft projects. She's learning to ride a 2 wheeler and is determined to be able to swim in Aunt Barbie's pool without her life jacket this year.

She's a pretty normal kid.

Rory is also desperately creative. Her imagination is enormous. She is never bored, always creating games or scenarios to play in. She loves to dress up, even forcing her brother to be her prince at the ball once and a while. She extremely intelligent, can count well past 50, knows all her letters and is learning to read. She loves to learn and soaks knowledge up like a sponge. Rory is a beautiful little creature, inside and out.

Rory also has stress management issues. Did you know that? Oh you didn't? Okay let me explain...

Rory was born from a mother with clinical depression and a father who is extremely nervous all the time about things. Neither is a negative thing, it's just two facts. Rory, unfortunately, got a cup full of both in her human being recipe. She is incredibly sensitive, feeling all her own emotions and everyone else's in the room too. Rory takes the tiniest things to heart and never wants to disappoint anyone. We went through a good 6 months of her being scared to death I would leave her or give her away if she got in trouble. That was followed by a few months of her deathly fear of the police. (That one was only cured by me calling in a favor to a dance dad who happens to be a police officer) She isn't acting. She isn't faking. Rory develops her fears in her mind in to something huge, much bigger than it needs to be. It's okay. We're used to it and we know how to deal with it, but you don't. That's all right. I'll educate you.

Oh and...she also has trichotillomania issues. Basically, when she's stressed, nervous, sick, tired, etc, she twirls her hair obsessively. On her really bad days, she'll pull it out. Last fall was exceptionally bad and we ended up at Pittsburgh Children's for all sorts of tests and scans, making sure she didn't have a hairball in her stomach that she'd need surgery to remove. Because of her tricho, she is extremely sensitive to having things in her hair. It bugs her so bad...twirling her hair is her security blanket and with her hair in a ponytail, she can't twirl if she needs to.

So let's go back a few weeks to dance recital.

I saw the looks you gave me when you realized "the dance teacher's daughter" wasn't wearing tights or a bow in her hair. I saw you whispering about how Rory cried backstage. I overheard you discussing Rory's "bad behavior" at the recital. I saw you roll your eyes when Rory didn't go to the cafeteria with all the other kids her age and stayed with the advanced girls. It did not go unnoticed.

But guess what, judgey moms, I don't care. I really like you the other 363 days of the year so I'm going to let this slide. But please, listen up...

My daughter was born one month to the day before the dance show in 2009. She spent her first dance show snoozing in her car carrier right offstage. She knows nothing but the hectic, busy pace of being backstage. That's where her grandma, great grandpa, grandpa and mom all are. What do you expect? I hired her a wonderful babysitter to hang out with her, get her snacks, play games, etc and Emilee did a fantastic job.

Backstage. Where my daughter, with her stress management issues and trichotillomania, could be near her family.

Did you think about that, judgey moms? Did you, as you were changing your own daughter in to her one costume and shiny black tap shoes or pretty pink ballet slippers and fussing over her hair and makeup, did you remember that I don't get to do that with Rory? I don't get to sit beside her before the show, perfecting her eye makeup and touching up her lipstick, because I'm running around getting everyone else's kids ready and in place. I'm fussing over Susie's headpiece, pinning it just so. I'm adjusting Mary's hat, so it's perfectly cocked to the left. I'm adding bobby pins to Annie's bun, securing it tight. I'm handing out band aids to Johnny, for his skinned knee.

Then I'm stapling more stars to the set. I'm figuring out special lighting for your daughter's ballet dance. I'm hot gluing silk flowers to one more wreath, spray painting one more cane and gluing more false eyelashes on than I can count. I'm braiding hair, twirling buns and handing out tights. I'm coordinating photographers, videographers, flower vendors and cookie vendors. I'm getting change for the ticket sales, I'm finding the rest of the programs and making sure the playlist is perfect on the ipad.

I'm not sitting beside my daughter, talking about how fun this is going to be and how grandma and grandpa are so excited to see her dance. I'm not reprimanding my son for kicking the seat in front of him, looking around the auditorium for the uncle who's 5 minutes late or the aunt who promised to bring a gift. I don't get to sit and watch my daughter dance, in a seat from the front. I don't get to cheer Yay Rory! and then rush out the door to pick her up at the end of the hallway with a big hug and a huge Way to Go!

At best...I get to watch my daughter from the wings, for about 30 seconds. Rory gets what's left of my energy when it's time to get ready. She gets snapped at for no reason. She gets a quick hug from her extremely busy grandma. Thankfully, our backstage workers are like family and make sure to fuss over her a little when they see her but still. It's not the same.

It's not the same experience for Rory. It's really hard. It's really stressful. It's no wonder she cries. It's no wonder she went on without tights on. And it's really no big deal. Please, stop judging her and me. We're just doing the best we can and we wouldn't have it any other way.