It's interesting how when you are consciously thinking about something you notice that thing everywhere. Of course, whatever it is, it was always there in the same amounts, but you just didn't see it. Like how a woman who desperately wants to get pregnant or who has recently had a miscarriage notices pregnant women everywhere. Or, how when we first started suspecting Hannah had Asperger's I started seeing people on the spectrum everywhere I looked. Well, the past few weeks as I've been thinking about SPD and all the strategies we use to help Hannah overcome it's challenges I've been noticing others out in the community who probably also have SPD or at least show marked sensory sensitivities in one area or another. For example, the other day at the mall we were walking along behind a family of 3-a mom and a dad and a son around age 10. The mom and dad walked hand and hand together while the boy walked several feet ahead of his parents running his fingers along the walls and store windows. He was aware of his parents though because he periodically checked over his shoulder at them and when they stopped, he stopped or at least slowed his pace. The besides the sensory seeking of touching the wall, the other noticeable thing about this boy was that he wore sound canceling headphones-the kind you see people at racetracks wear. He wasn't wearing your garden variety earphones in his I-pod. These headphones had one purpose and one purpose only-to block out sound. It appears they were doing their job well because the mall was quite loud and he seemed perfectly content to cruise around with his parents. Then, today we were at McDonald's and a young woman and her parents sat down at the table next to us. Besides obvious physical disabilities (she was in a wheelchair and had limited use of one of her hands), it was clear to me that she too had some auditory sensitivities because she spent much of the time during the meal with her fingers in her ears. She would take a bite or a drink and then immediately place her fingers back in her ears. She wore an almost pained look on her face and you could tell the whole experience was quite stressful for her. While I didn't consider the restaurant terribly loud, at least not the way McDonald's can get on a Saturday at lunchtime, because I have been thinking about sensory sensitivities lately I stopped and listened for all the things I DIDN'T hear. Then, I heard it-the ice machine clunking, the lights humming, the chairs scraping, the crackle of wrappers, the hum of conversations, the occasional baby or toddler shrieking. It was all there and no doubt it was quite overwhelming to her. Hannah was fine with the main restaurant, but I knew our time was about to come because we planned to visit the play place. It was raining and yucky outside so the play place was packed. As soon as we walked through the door the chaos and noise hit us. Hannah stiffened and I knew we wouldn't be there long. The poor thing tried to tough it out because she absolutely did not want to go back home and nap, but there was no playing going on and she was clearly uncomfortable so we left quickly. It was interesting to me how there were two people with auditory sensitivities right next to each other, but the noises that were bothersome to them were quite different for each of them. That just illustrates how individual SPD can be and why it can be so hard for teachers, family members, and strangers to understand what our kids struggle with even if they already know someone else who has SPD. I guess that's why awareness is so important. Each new person we make aware is one more person who will hopefully be more understanding the next time they notice puzzling behavior by someone they think is inappropriate or overreactive.
Hannah had her first visit with the orthopedist here in Rhode Island. If you've followed this blog for awhile you may remember that Hannah is extremely flexible and has loose, hypermobile joints. Last year at the orthopedist in Indiana he recommended a watch and see approach and that we have her reevaluated in a year. Well, we couldn't really go back to that same doc so we got referred to a new one here. I really liked the guy. He was patient, took the time to explain to me what he was doing, why, and what it all meant, and he was funny to boot. Hannah liked him because he gave her a sucker. Never discount bribery when it comes to a 3 year old's affections. The results of this appointment were that Hannah's wrists are quite bad. They easily dislocate, but it causes Hannah no pain when they do! I knew they were wiggly, but I didn't realize they were actually dislocating. The rest of her joints are very loose, but on the extreme end of normal for the moment except for her ankles. She overpronates a lot which causes her to fall often and run funny. She also has flat feet which isn't really a problem in and of itself except for the fact that it points to the underlying problem of loose ligaments. Because her feet roll in so badly Hannah has begun to compensate by turning her knees in and getting her hips out of alignment. In an attempt to prevent the foot rolling from causing a domino effect up the rest of her body that will eventually lead to pain and other bones being out of alignment, the orthopedist has recommended we place Hannah in foot and ankle braces for the next year. After a year we will see if her ligaments have tightened up enough to prevent her feet from rolling excessively. If they've tightened then no more braces and Hannah is considered at the extreme end of normal for joint stability and we don't have to worry too much. If they haven't tightened or if they seem worse or if other joints seem to be less stable then the doctor will be evaluating her for something called Ehlers Danlos syndrome. Please wish us luck that Hannah will tolerate the braces since she doesn't much care for shoes or socks! Also, pray that after a year all systems will be a go to remove the braces and be done with the orthopedist.
Hannah has been doing very well at school. In fact, she's done so well that we are doing a trial run to see how she does going full day! So far, so good! The other day when I went to pick her up they were out on the playground and she was pushing another kid in the swing and then later (I stood and watched for awhile before she noticed me) she called out to one of her friends and said, "Antonio, chase me!" and he did! She didn't just play when approached by another, she actually initiated the play! I was so thrilled!!!!! These social skills aren't transferring yet to people she's not comfortable with, but it's a very big start I think.
Lately Hannah and I have been doing a lot of scrapbooking together. I've really been enjoying it. Even before Hannah was born I dreamed about someday being able to scrapbook with her and I prayed it would be something she liked doing. So far I don't have to worry. She loves to cut, paste, and punch out shapes from paper. She's actually quite good at using scissors and is very creative when it comes to designing her pages. Then there are times when she's just content to sit and punch out her shapes. It's good fine motor heavy work so that makes me happy too. It's a win win!
In addition to all the advances Hannah has made in her reading skills recently, she's also acquired some mad counting skills too. So far she can count by 1s to 100, 2s to 20, and 10s to 100. She's working on learning how to count by 5s, but for some reason they are proving trickier for her than by 2s. She's really good at patterns so I'm a bit confused about why she can't quite see this pattern, but it'll come. She's only 3 after all!
This past week was an awesome week for Hannah. It was probably the best week she's had since we moved to Rhode Island 8 months ago. There have been a lot fewer time outs than normal, less sass, and some amazing social interactions with peers. We've revamped her sensory diet significantly and brought in two more swings for the basement (Hannah's trapeze bar/rings from her swing set outside and Kyle also made her a platform swing like the one she uses at OT) and I'm positive that's had something to do with it. Today was a little more rocky than the rest of the week, but then we were more lax about the sensory diet and her days aren't nearly as structured on the weekends as they are during the week. So, we'll see how next week goes to see if we can keep this good momentum going.
The other day Hannah and I were having a conversation about a friend who had a baby last month. That got Hannah thinking about babies and how they are born and parents in general. Hannah knows she was adopted. She knows her birthparents and knows that she grew in Tiffany's belly and not mine. What I didn't realize is that she didn't understand that not everyone has two sets of parents. She was confused to learn that our friend Sarah was both the Mommy and birthmother to Hannah's friend Evelyn and Evelyn's new little sister Vivian. We then went through many of the people we know and Hannah asked who each person's Mommy and birthmother was. By the end of the conversation I think she was still a bit astonished that so many people she knew had only one set of parents! It complicates things a bit since Hannah's brother and sister were not adopted. Tiffany chose to parent her twins, but chose to place Hannah. Knowing that Tiffany is Kayla and Chase's Mommy and birthmother, but only Hannah's birthmother was very head scratching for her. I think this is the beginning of Hannah starting to realize that being adopted means that she came into our family in a different way than most people come into families. We'll just keep on having these types of conversations so that she understands as much as she's developmentally able to get and that she feels comfortable with her status as an adoptee.
Before I get into my SPD part of the post I have several fun Hannah stories I want to share. Princess mania is still rampant in our house. Hannah loves anything princess related and doesn't stick completely with the Disney Princesses although she certainly knows them well. I had no idea how much she had internalized the "princess persona" until last month when my dad came to visit. During his visit, Hannah asked him to play princess with her. She said that she would be the princess and he could be the prince. Grandpa asked her how you play "princess" and she replied, "I'll just lay down and then you kiss me." She then proceeded to lay on the floor (in full princess dress-tiara and all!) and close her eyes and wait to be kissed. When my dad grabbed her hand to kiss it he was reprimanded and told, "No, not on my hand! You kiss me on my lips." OH MY GOSH! What is Disney teaching my daughter? Her main objective as a princess is to be kissed by the prince. As if that wasn't bad enough, when asked what a prince does she replied that princes kiss the princess, help her up, and dance with her. At first I was appalled at her over simplification of the role of prince until I thought about it from her limited perspective-Disney. What do the princes in Disney do? They kiss the princess and wake them up from sleeping, they help them, and they always, always dance with the princess. For pete's sake, the princes of Disney don't even have names! Well, except for Prince Phillip in Sleeping Beauty. He has a bit more of an active role than the other princes. That same day that Hannah was conning Grandpa into playing princess with her, she began calling her daddy her Royal Prince which quickly morphed into Royal Daddy. Daddy gets Royal Daddy and I get, "Mommy, you can be the girl prince and kiss me because I'm the princess."
Ok, enough about royalty. Here are some other random "kids say the darnedest things" snippets. One day before church we realized that Hannah had outgrown her dress shoes so I pulled out a pair of shoes in the next size up that I had bought from a yard sale last summer. These new shoes had very small square heels on them. She was so proud of her new shoes and how they clacked on the wood floor when she walked. She excitedly exclaimed, "Look Mommy! I have up heels!" Any guesses as to what she meant? I burst out laughing at my poor girly daughter trying to gain feminine knowledge from her non girly mother and getting so horribly mixed up. :)
Here's another preschooler observation for you. Hannah called to me from the bathroom one day and I asked her what she needed. She replied, "Mommy, pee is like a shower from my butt." That it is sweetheart, that it is!
Finally, Hannah made her first real joke the other day. We were driving by a large hotel near our house that has a huge lawn that they often rent out for various events. Several times over the summer right after we moved into our house the hotel hosted dog shows. So often in fact, that Hannah started calling the hotel the dog show even when there was no dog show going on. On this particular evening as we were driving by the hotel there was a huge flock of Canadian Geese on the front lawn. Hannah noticed the geese first and exclaimed, "Look! There are geese at the dog show. It's a Geese Show!" Then she burst out laughing, knowing that she had just said something funny.
Ok, now back to our regularly scheduled programming, SPD Awareness Month. Hannah has an oral fixation and almost always has something in her mouth. When she is anxious or scared she will gnaw on whatever is available. This chewing is calming for her so we try not to discourage her because we like it that she has discovered a technique that helps her self regulate. Unfortunately, the things that are most readily available to chew on are her hair, clothes, or even her hands. Besides being unsanitary, soaking wet hair and clothes are just gross. We started thinking about what we could use as a substitute that would satisfy her need to chew. The first thing we found that worked well were simple teethers. At home Hannah still uses them, but the problem was that they weren't practical when we were out places because they were easily lost and they were quite noticeable. Because Hannah looks older than she is due to her size, she draws stares when others see her chewing on a baby teether because they think they are seeing a 5 year old chomping away. We didn't have any other alternatives until we moved here to Rhode Island and her OT suggested that we make her a bracelet that she could always wear that she could also chew on. She took a length of medical tubing and cut it to length to fit Hannah's wrist and tied some knots in it and Viola! We had a winner. Hannah's chewy bracelet has been a life-saver. We rarely go anywhere without it anymore and Hannah has it with her so it eliminates the need for her to have to ask for her biter. She can just start chewing away any time she feels nervous. I'm really hoping that this will help save her hands this winter because last winter she went through a period where she was particularly anxious and the combination of her chewing on her hands and the cold weather led to raw, red, bleeding hands.
Hannah's tactile sensitivity has seemed to be increasing lately. Well, we think it's increasing, but the reality could very well be that her ability to tune into her own body and communicate what she is feeling is getting better. Besides picking at her toes until they bleed, Hannah has started complaining that her socks and her coat hurt her. She has also started to say at times that tickling hurts her. The sock problem I've pinned down to the seams inside the toe. I've managed to solve this problem by letting her wear them wrong side out. The coat problem has been harder. I'm not exactly sure what it is that is bothering her. Her spring coat didn't seem to bother her and this is the same winter coat she had last year and we didn't have a problem last winter. It's a bit of a mystery and she can't really seem to tell me what she doesn't like about it, only that it hurts. The worst by far of her tactile sensitivity issues though is when she goes to the bathroom. Every single time she goes to the bathroom she either tries to wipe her labia raw or as soon as she pulls up her pants she starts crying that she's having an accident when she's not. I've tried doing the wiping, but it doesn't seem to matter how much I wipe. It's never enough. I've felt her to see if she really is having an accident or if there is still moisture, but I can't feel ANY moisture at all. The screaming and the meltdowns that occur after bathroom trips are awful. Not only is it upsetting for Hannah, but it can make it really hard to get out the door since she will insist she is having an accident and want to get back up on the toilet again, and again, and again with no results each time and no actual accident. UGH!
To close, here are some links to some of my favorite SPD bloggers. Enjoy!
Before moving to Rhode Island we had turned our spare bedroom into a sensory playroom for Hannah. While living in our temporary apartment when we first moved we really missed all of the tools we had developed to help Hannah regulate herself. Finally, after almost 5 months in our new house, we have a sensory playroom for Hannah again. We have some of the same elements that we had back in Indiana while others had to be revised because of the space we had to work with. Some things are much much nicer than we had before, while other aspects of her old playroom we really miss. Before I go into what her old room was like and what we've done with the new room, I'll fill in those who are new here about what sort of sensory problems Hannah has.
Most people are very familiar with the "5 senses," sight, smell, touch, taste, and hearing. What many people don't know is that there are two more senses often described as the invisible senses, proprioceptive and vestibular. The vestibular sense I had at least heard of before. When someone feels vertigo or has an inner ear infection, the vestibular sense is involved. Your vestibular system controls balance, senses movement, and helps with spatial orientation. Hannah's vestibular system is not as sensitive as it should be. As a result she craves excess movement such as spinning, jumping, swinging, etc. She almost NEVER gets dizzy and we can't swing or spin her high or fast enough. She has poor balance (although it is improving) for her age, but she still takes excessive risks in order to get her vestibular "fix." It's almost like she's a drug addict in that her little body compels her to do whatever it takes to get the sensations that her body craves that the rest of us feel just by living our lives and take for granted. When she doesn't have enough vestibular input she is wild, overly anxious, defiant, withdrawn in overstimulating situations, and less willing to interact with peers. She basically doesn't feel right in her own skin, but doesn't know what to do about it. The proprioceptive system tells your brain where all of your body parts are in relation to each other. When someone is asked to take a field sobriety test and close their eyes and touch their finger to their nose the officer is testing their proprioceptive sense because intoxication impairs your sense of proprioception. One of the most common visible signs of proprioceptive problems is clumsiness. Hannah's proprioceptive system is also under reactive. She is extremely clumsy. She trips often, misses her chair when sitting down, and is constantly falling or bumping into things. She has trouble judging pressure so she often hugs too hard, pats too hard, and purposely crashes into people and things so that she can feel where all her body parts are. She doesn't just know where they are so she instinctively craves pressure and input from outside her body to replace the sensations that are not being transmitted properly within her body. Besides problems with proprioception and her vestibular system, Hannah is also over sensitive to smells, sounds, and touch.
OK, back to the playroom. Hannah's sensory playroom almost exclusively focuses on her vestibular and proprioceptive challenges because those are the most prominent and hard to deal with. The two things that I miss the most about her old playroom are a chin up bar that Kyle mounted to the closet door frame low enough for Hannah to grab it and swing and flip on it. This chin up bar worked both Hannah's proprioceptive and vestibular systems and she LOVED it. The other thing I miss is her hammock. We put an old queen sized mattress on the floor and mounted a hammock to the wall. We would swing her vigorously in the swing and also flip her out of the hammock onto the mattress. The hammock was also awesome because it worked her vestibular system and gave her deep pressure (proprioceptive system) which she craved. In her new playroom we have room for her to use her hop ball (works both vestibular and proprioceptive systems) in the house, there is a pole for her to spin around (vestibular), and (my favorite addition) a crash pit which works her proprioceptive system. For the crash pit I got a cheap blow up swimming pool (only $8 off season) and filled it full of pillows, blankets, and her stuffed animals. Hannah runs across the room and jumps into the pit giving her body the input it craves. Then when she is tired of crashing she burrows down into the stuff in the pit and just relaxes and watches a movie. All those pillows give her deep pressure that is calming for her. In her playroom we also have a mini trampoline, a disc swing, an exercise ball, weighted medicine balls, and a child sized shopping cart and lots of bags, baskets, and buckets for carrying and pushing heavy things around. Most of the things in Hannah's playroom are also at her OT's office, but the OT's equivalents are very expensive to buy. There is no way we could possibly afford to outfit a playroom for Hannah with all the features we wanted if we had to pay what things cost in the therapy catalogs. However, it's possible to make a fully functional playroom for not much money. The most expensive thing in Hannah's entire playroom was her mini trampoline and it cost $60. If you have an older child (Hannah was only 2 and was not very coordinated when we got it) you could get one much cheaper at Walmart, but we wanted one with handles since Hannah did not have good balance.
Here are some past posts that mention various aspects of Hannah's sensory difficulties.
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."