Sensory Processing Disorder Awareness Month

October is Sensory Processing Disorder (SPD) Awareness month. Until Hannah's developmental therapist first mentioned SPD over a year ago, I had never even heard of it. Kimberly (Hannah's DT at the time) started throwing around words like proprioceptive input and vestibular system. I felt confused and a bit overwhelmed. She stated that Hannah would need a sensory diet and I immediately worried about my ability to deal with any sort of specialized diet since I'm not much of a cook. It turns out a sensory diet isn't food at all (well it can be, but that's another story!), but is instead a list of activities that meet various sensory needs. We would soon find out that a sensory diet for Hannah would turn all of our lives around. Throughout this month I'm going to try to post some information about SPD in general as well as how SPD affects Hannah and what we've found helps her manage it. I'll also be linking to previous blog posts where I touch upon SPD issues as well as linking to other blogs written by parents with children with SPD.

I'll start by detailing what exactly SPD is. According to the SPD Foundation,

"Sensory Processing Disorder (SPD, formerly known as "sensory integration dysfunction") is a condition that exists when sensory signals don't get organized into appropriate responses. Pioneering occupational therapist and neuroscientist A. Jean Ayres, PhD, likened SPD to a neurological "traffic jam" that prevents certain parts of the brain from receiving the information needed to interpret sensory information correctly. A person with SPD finds it difficult to process and act upon information received through the senses, which creates challenges in performing countless everyday tasks. Motor clumsiness, behavioral problems, anxiety, depression, school failure, and other impacts may result if the disorder is not treated effectively. "

According to their website SPD can look like,

"SPD can affect people in only one sense–for example, just touch or just sight or just movement–or in multiple senses. One person with SPD may over-respond to sensation and find clothing, physical contact, light, sound, food, or other sensory input to be unbearable. Another might under-respond and show little or no reaction to stimulation, even pain or extreme hot and cold. In children whose sensory processing of messages from the muscles and joints is impaired, posture and motor skills can be affected. These are the "floppy babies" who worry new parents and the kids who get called "klutz" and "spaz" on the playground. Still other children exhibit an appetite for sensation that is in perpetual overdrive. These kids often are misdiagnosed - and inappropriately medicated - for ADHD."

For more information on signs and symptoms of the various sensory systems that may be affected check out the Sensory Processing Disorder Resource Center.

Finally, for those of you who aren't familiar with Hannah's story, here is a link to the post I wrote last year for SPD Month.

Sass

The sass that is uttered in this house is unbelievable. I never thought I'd deal with this kind of thing until much later on. If it didn't wait until the teen years, I at least thought I had until Hannah hit elementary school before I had to listen to it! Apparently not. Here is just a smattering of what I've heard over the past week in case you are curious what kind of sass a 3 year old could possibly dish out. Of course there is the ever popular, "I won't do it!" in all its many forms: "I'm NOT going to sit on my bottom!" "I TOLD you I'm not going to put my leggings on!" "I said NO!" "I absolutely WON'T put on my shoes because I'm NOT going to go to school!" "It's NOT cold outside (even though she's not even been out of the house!) so I'm NOT going to wear those socks!" The list goes on and on. There's the slightly more sophisticated, "You can't make me!" in it's various forms: "I'm not finishing my lunch! I'll hide under the table instead!" "I'll splash water on you if you do!" (trying to rinse shampoo from her hair) "If you put my hair tie in I'll smack you!" (I did, and she did!) "I hate these socks. I'm not wearing any!" "I'm NOT going to sleep! I'm okay with only having 2 books." (resisting nap time and letting me know that she doesn't care about a loss of privilege) Then there is my personal favorite, The world revolves around me. Here's how that one sounds: "I want my milk NOW! I will not be PATIENT!" "I already waited!" "Mom, MOM, M-O-M! Answer me!" "I said you can't answer the phone!" Finally, some miscellaneous sass for your reading pleasure: "I told you NOT to wear that shirt" (she thinks she has the right to choose MY outfits!) "Do NOT go to the bathroom Mom! Don't do it! I said NO!" (like she can control my bladder?) "I already told you I don't want that! I'm not eating it!" "I HATE school!" She even slams doors. If that doesn't scream teen attitude then I don't know what does!

I know three year olds are supposed to be full of defiance so maybe this is all normal. Maybe all 3 year olds sass like this. Since Hannah's my only child I'm a newbie at this so anything's possible I guess. Maybe it's just that all 3 year olds aren't quite as articulate and don't have as developed of vocabulary as my little darling does to torment their mother's with. Maybe. . . . But if this is what she can come up with now, what on earth is in store for her angst filled teenage years?!? Lord help me now!

Bringing in Machines

Today as I was working in another room I heard Hannah singing, but I couldn't quite make out the song she was singing. I snuck quietly to the doorway and spied on her. Here's what I heard (I about had to bite my tongue to keep from laughing out loud) "Bringing in machines, bringing in machines. Welcome and rejoicing, bringing in machines." Any guesses as to what song she had innocently misinterpreted the lyrics? When you think you've got it, scroll down to hear how the song is SUPPOSED to sound! Just click on the link to watch a you tube clip of someone who actually knows the lyrics.

http://www.youtube.com/watch?v=CijqH_2mLnc

Today was another good day. Hannah had a rocky drop off at preschool because there was a little boy there doing before care waiting to pick up his school bus who isn't normally there. He's non verbal and shrieks a lot when he's happy or excited, or for just about any other reason! The constant shrieking at random intervals was pushing Hannah closer and closer towards the edge until the teacher's aide offered to take Hannah to help her make some copies in the copy room. When they got back the boy had caught his bus and Hannah was fine. She ended up having a good day at school and was actually playing with two other kids when I came to pick her up. She and another girl were tipping over a foam coach repeatedly to dump a little boy out onto the floor and then all 3 of them would dissolve in fits of laughter and then do it all over again. It was nice seeing her engaged with her peers. In general, the rest of the day went smoothly and without major incident. Today was definitely a welcome reprieve from the Tyrannical Threes we experience most days.

Last weekend Kyle's dad came for a visit and Hannah was beside herself with excitement over him coming. That Friday she apparently told every single person who came into her classroom at school that her Pap was coming after dinner today. :) Once Barney arrived, both Kyle and I were chopped liver. I'm used to it since that's how I rate with regards to Daddy, but I think Kyle might have been a little surprised about it, though definitely pleased to see the two of them bonding. Historically Hannah has been a little leery of Barney. He is boisterous, unpredictable, and not exactly practiced in the art of interacting with a little kid anymore which makes him pretty untrustworthy in Hannah's book, but this visit there was a real breakthrough. Hannah chose to hold his hand over ours every chance she got and even let him hold her several times. She still refused to hug him, but there was progress made non the less.

So, what did you think of Hannah's rendition of Bringing in the Sheaves. I thought it was pretty darn cute myself. I only wish I had had the fore thought to grab my camera before I went in to investigate. How adorable would it have been to have been able to catch that on camera!?!

Good Day

Today was a GOOD day. I needed it. Hannah needed it. We needed it together. We spent a lazy morning watching cartoons and just lounging around. Then we went to the library. We were expecting to attend story time and do a craft, but they were both over for the summer. I expected a meltdown, but Hannah took it in stride. She was disappointed, but easily switched gears and went to play on the computers instead. We played Bob the Builder (an awesome computer problem solving and early math skills game for preschoolers by the way!) and had a blast. Then we picked out books, did puzzles, and then snuggled up on the library couch to read. Hannah read me 3 entire books almost completely on her own. She's really starting to conquer those level 1 early readers. I was amazed at how fluently she read most of the sentences. After the library we headed home for lunch. We ate without incident and then headed upstairs for nap time. Hannah went down easily and slept for almost 2 hours! I was also exhausted from our fun filled morning and laid down and napped as well. After our naps we had a snack and then went outside to play until Kyle got home. It was so nice to spend a day meltdown free and totally fun filled and relaxed.

Getting back to Hannah's recent jumps in reading skills, today she asked to read her "words" (some sight words I have written on index cards) and while we quizzed each other on the cards I realized that Hannah knows far more sight words than I even imagined. She probably knows at least 60 of the words off of the 100 most used words in the English language list as well as many other sight words. She's also getting much faster at sounding out easily sounded out words. It amazes me how quickly she picks up these words without any teaching. She must just be watching and following along as we read the dozens of books we read every day and storing word after word into her memory to bring back up to the surface when asked to read a word or when she sees it again on a sign or T-shirt.

Doing Well

Hannah seems to be doing well at preschool so far. She went on Monday and then again on Wednesday. On Monday she was pretty hesitant to leave me, but didn't cry. It took me about 10 minutes to get out, but I did so with a clean break. That was good. She apparently only got upset once on Monday and that was when it got really loud in the room. She told the teacher she wanted to go home, but her teacher was able to calm her by having her sit next to her during circle time. When I picked her up she ran over to me faster than I've ever seen her move and gave me a great big hug and said, "I missed you!" That made me feel good. Yesterday she separated much easier. It only took me about 5 minutes to get out of the room and when I left she was happily drawing with some crayons. She never even looked up to watch me walk out. When I picked her up I was able to observe her for awhile before she noticed me. She was standing around a table with two other kids and they were repeatedly pressing down and popping up a piece of bread in a toy toaster. Each time the the toast popped up the group with dissolve into hysterical shrieks of laughter, Hannah included, and then it was lather, rinse, repeat for at least 5 minutes straight. I have no idea how long they had been at it before I got there! It really made me happy to see her with that group of kids instead of off by herself, and while she wasn't talking to the kids she was fully participating in the "game"-no conversation needed! :) When she finally noticed me she didn't even come over to me! I practically had to drag her out of the room. On the way home she was able to tell me several things about her day, including that she had played "American Egypt" in the sandbox (whatever that means) outside during recess. It looks like we made the right decision to place her in this class. YEAH! Hopefully by the end of the year she'll be talking to her peers in her class and maybe even random kids she meets other places. Wouldn't that be great?!?

Kid's Say the Darndest Things

More and more often Hannah says things that just crack me up. Most of the time I forget to write them down and barely even manage to remember what they are long enough to tell Kyle when he gets home, but I've been trying to get better about it. Here are a few of the highlights from the past couple of weeks.

The scene: Hannah has been fooling around during lunch trying to stall going down for her nap. She tries her favorite avoidance tactic of saying she has to go to the bathroom. While on the toilet she starts playing with the toilet paper. I enter to scold her and warn her that if she doesn't straighten up lunch will be over and it will be nap time.

M: If you don't stop playing around you will go right upstairs!

H: (in a shocked voice) With no wiping?!?!

I had to fight back the urge to pull out one of my favorite lines from the Princess Bride on that one, "Inconceivable!"

The scene: Playing with the stethoscope in her doctor kit.

H: Oh no! I can't hear your heart beeping Mommy!

I wonder if she knows she's not far off in her beeping description since that's how it sounds on the EKG machines!?!

If wishes were horses. . . . . or should I say unicorns?

H: I wish I had a unicorn in my backyard to ride.

H: I wish milk could come out of the sink.

Do they make milk taps like they do for beer?

H: I want to do it by my own.

School Girl

Tomorrow is Hannah's first day of preschool. We ended up going with the private preschool because Hannah was determined ineligible for the school system program because she tested at gifted level on her verbal language test. This wasn't news to me. I told them as much. That's part of what makes Hannah's weaknesses so apparent if you really care to pay any attention at all. She's capable of extremely advanced language for her age, but is unable to use even typical language with her peers. It's a huge gap between what she can do and what she's able to display in a social situation with other kids. Hannah is pretty excited to be starting school. She's got her Dora backpack, Tinkerbell lunchbox, and Princess thermos. In her eyes she's all set. I'm a bit nervous about how she'll do. Four hours is a long time. She's never been in a social situation for that long without Kyle or I present.

I must say that if she ends up being comfortable, this should be good for both of us. It's been a rough few weeks around here and both Hannah and I need a break from each other. Hannah has fully embraced her place in the Tyrannical Threes and has been bossing around everyone in sight. She screams at even the slightest hint that she might not get exactly what she wants RIGHT NOW. And she's ramped up her hitting and kicking to never before seen levels. I'm sure her rage is becoming a neighborhood legend. At least once a day she will get to the point that she is hitting or kicking me and I am unable to get her to stop or stay away from me so I have to close her into another room and hold the door shut. I HATE doing this (and CPS would probably be do an investigation if they knew), but all other efforts to get her to deescalate have failed. I'm no longer strong enough to hold her arms and legs down so that she can't hit or kick so my only option to keep myself from becoming black and blue is to remove her from me. Closing her into a room makes her even more angry initially and her rage usually escalates, but eventually she will calm down when she no longer has a person to fight against. The thing that scares me the most about her rages is that she seems oblivious to pain during them. She will pound on the door or walls so hard that she will bloody her knuckles, but she doesn't stop. She keeps going and going and it's only after it's all over that she realizes she's hurt herself. She's only 3, but I have no idea how to help her manage such rage. It's so unlike the temper tantrums I see other kids have. Anyone have any ideas?

On a lighter note, Hannah's reading abilities are now transferring to her spelling skills. Instead of only spelling words she has memorized she is attempting to write words by sounding them out. One of her favorite things to do is make the grocery list with me. Here is a sample from one of her recent lists: MLK-milk, PES-Peas, FROOT-fruit, JLE-jelly The fruit really impressed me. That's how I'd expect a first grader who's been learning some of the more complicated vowel patterns to spell fruit, NOT a newly turned 3 year old! Her handwriting is also improving by leaps and bounds. She can now attempt all the upper case letters with at least some degree of success without any help or anything to look at. She's quite legible on most of them. S, G still give her quite a bit of trouble, but even those are starting to come around and she can get them pretty well with some verbal cues and an occasional hand over hand to get them started. She's also becoming quite well at transcribing. She can copy up to four words in a row accurately without any prompting or supervision. That sure made making birthday thank you cards easier this year! I'm so proud of all of her academic accomplishments. Makes me wonder what she'll be doing by the time she actually makes it to kindergarten and first grade though!

Yesterday we had such a great time out on the beach. Hannah and I walked down to the little beach at the end of our street to swim. Instead of swimming we ended up catching periwinkles (little snails for those of you back in the Midwest), hermit crabs, and even tried our hand at quahogging (digging for a certain type of clam). I never managed to get any Quahog though. I kept finding what the locals call steamers instead. Hannah was so happy splashing around in the water and chasing crabs and catching periwinkles. Seeing her with her little pail dropping in snail after snail filled me with such joy. She was so content. We are so lucky to have these opportunities within easy walking distance of the house.

My Little Terrorist

While I've often complained that the airline industry took security as far as what was and was not allowed onto a plane a bit far in the post 9/11 aftermath, I now believe they were completely justified in banning toenail clippers from carry-on baggage. They can (and have now been used in my house) be used as a terrorist device. Confused? Remember this post? Apparently I should have been more specific in my post "beautification" lecture. Instead of stressing that she should NEVER cut HER hair with SCISSORS, I SHOULD have hammered into her little brain that she should NEVER EVER EVER attempt to cut ANYONE'S hair with ANYTHING. Are things becoming clearer now? Ready for the full story? Lately I've been even more exhausted than usual so Hannah has been allowed to come into our bedroom when she wakes up and watch PBS until I'm coherent enough to tackle the day. This morning I was struggling more than usual with getting myself moving so apparently Hannah tired of TV and decided to make her own fun. I felt her climbing around me, but didn't think too much of it. Then it felt like something pulled my hair. I opened my eyes to find toenail clippers poised less than an inch from my eye being wielded by a newly turned 3 year old! I was so startled I bolted upright and nearly knocked Hannah off the bed. Once I recovered I asked her what she was doing. She calmly replied, "I'm cutting your hair, Mommy." Seriously, do other people's kids do this or am I the only lucky one?

Lately I've been doing battle with the local school system (while simultaneously researching private preschools in case I lose) since they have deemed Hannah too high functioning to qualify for their preschool unless she scores poorly on their language pragmatics test they want to perform next week. The problem I have with this is that only one person on the eligibility team has seen Hannah in the environment that gives her so much trouble. Not only that, but the observation lasted only 30 minutes and was during a highly structured group circle time that required little to no peer interaction of Hannah. When I discussed my concerns that although Hannah is highly capable of using advanced language, she is unable to do so with peers even when she is distressed and wants a child to leave her alone and the only word she need utter is "NO" in order for a teacher to intervene and her therapists reiterated this concern many times over, the eligibility team assured me that if there really was a problem then it would show up on the language pragmatics test they intend to administer. Um, I'm not a speech pathologist, but I DO know my daughter and I'm positive that she'll ace whatever language test they give her if it's administered one on one by an adult. It's not that Hannah doesn't understand HOW to use language. Her problem is the practical aspect of using that language effectively (or at all) with peers or often even with adults when she's in a socially overwhelming social environment. Whether they choose to believe it or not, those who really know Hannah know this is a problem. Though the defender of justice in me wants to make them provide her with what I firmly believe that by law she is entitled to, I'm growing weary of this fight and I'm not altogether convinced that this classroom (taught by the person who observed her for 30 minutes and proclaimed to know all about her) will be the best place for her. I'm not sure that this particular teacher will be able (or possibly willing to after all the fight I've put up) to meet her needs IEP or no IEP. I've found a private preschool near our home (recommended by her speech therapist) that seems like it would be a perfect fit. It's fully inclusional, has OTs, PTs, SLPs, and a nurse on staff, and is taught by the teacher that USED to have the job of the lady who observed Hannah and who would teach her class should she qualify and attend the school system's program.

As Hannah becomes more and more willing to and interested in interacting with other kids I've begun to notice a troubling pattern. Take today for example. Hannah and I walked down to the beach to play in the sand. Shortly after we arrived a father and his two daughters (aged 4 and 5) showed up to swim. They tirelessly engaged with Hannah until they finally broke through her defenses (aided I'm sure by all the sensory input the ocean provided!). All of a sudden Hannah was playing happily with the girls. As she became more comfortable with the girls she swung 180 degrees from refusing to interact to completely being in their faces and just generally being too close and not respecting their personal space. It wasn't long before the girls who had been actively trying to get Hannah to play with them were now trying to get away from her and Hannah was clueless as to the change of events. I felt so bad for her. She really thought they were all having fun. I tried to remind her to give them space, to not shout in their faces, to keep her hands to herself, but she just couldn't understand. They wanted to play with her. They were being nice to her. Why shouldn't she play with them in the only way she knows how? I see this pattern happening over and over again. Nearly every time Hannah manages to break out of her anxiety and make an initial connection with another child, it almost always begins to go south as she becomes more comfortable and attaches herself at the hip to the other child. Right now she doesn't get it that these other kids don't want to play with her anymore, but what I'm worried about is that if we can't teach her how to sustain the initial positive interaction she will eventually begin to notice that kids don't want to play with her and be hurt by it. I just don't want to see that happen to my little girl. What I don't know is how to teach her how to do it and how long I have before she starts to notice when the kids don't want to be around her. So, for all you veteran parents out there, how old are kids usually before they start to notice what other kids think about them?

Toilet Paper

Toilet paper just may be my undoing. It really and truly may drive me into the loony bin. Every kid plays with the toilet paper roll at one point or another, or so I've heard, but Hannah seems to have taken it a step farther. For the past few months she has become obsessed with toilet paper, but she's not just randomly unrolling the roll. Instead, she's tearing off pieces, sometimes little and sometimes big, and shoving them inside things, usually bodily orifices. So far I've found toilet paper stuffed inside the fins of the radiator in the bathroom, inside the faucet, between the tube and the rod that holds the toilet paper to the wall, between her toes, inside her ears, in her mouth, between her labia, between her butt cheeks, large wads inside her underwear, shoved in the toes of her shoes, under her arm pits, and most recently 4 tiny balls shoved deeply inside each nostril.

In other news, we had house guests last weekend for Hannah's birthday party. My mom, sister, and cousin all flew in from Indiana. Hannah was in her glory with 3 extra adults to dote on her. She was completely exhausted by the end of the weekend though! They brought Hannah tons of princess/ballerina paraphernalia, her favorite of which was fingernail polish. Hannah absolutely adores having her nails painted, but I don't own any nail polish. The cutest part of the whole scenario is that for some reason she can't say toenail polish. Instead, she says paw nailish. How precious is that!?!

Leading up to my family's visit Hannah felt the need to go over and over family relationships. She wanted to know how each person related to both her and me, for example Heather is my sister, but her aunt. Mom is my mother, but her grandmother. Today she started back in on the family relationships. When we got to my sister, Hannah stated that when she was bigger she would be a sister too. I explained that she was already a sister to Kayla and Chase (Tiffany's twins). Then she noted that when my friend Sarah has her baby her friend Evelyn will be a big sister. Sensing she was getting it I said, "That's right!" Then she proved me wrong by stating very matter-of-factly, "Now I'm a little sister because I'm little, but I'm growing now and when I'm grown I'll be big and I'll be a big sister then." It's hard to argue with that kind of logic!

My Baby is Three!

It's amazing how quickly three years have gone. It seems like just yesterday Kyle and I made the decision to start the adoption process and now here we are parents of a 3 year old! The past 3 years have held more joy than I ever could have imagined my entire life containing. I feel so blessed to be chosen by God and by Hannah's birthparents to parent this amazing little girl. What a wild ride it's been! I can only imagine what the next 3 years have in store for us. I'm too tired to post much tonight, but for now enjoy these carefully chosen photos of my beautiful little girl.