Working towards a definition
Sensory processing (sometimes called “sensory integration” or SI) is a term that refers to the way the nervous system receives messages from the senses and turns them into appropriate motor and behavioral responses. Whether you are biting into a hamburger, riding a bicycle, or reading a book, your successful completion of the activity requires processing sensation or “sensory integration.”
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.
Twenty-two pages. That’s how thick this is. Twenty-two pages of evaluation results, recommendations and suggestions on how we can take action. I am sitting in front of a pile of paperwork handed to me today by Kathryn’s school. I’m having trouble sorting through everything and I’m going through the motions that any parent would: “Is this genetic?” “Could this be why I can only do certain things?” “Was EB NOT the only reason I did things a certain way?” “Gee, could she be any more MY kid?”
My daughter’s behavior at home and school has triggered a 504 plan to see if we can get things under control. I’ve known for several years that my daughter can be quite dramatic and often draws attention to herself, whether it be a meltdown, speaking loudly or over-exaggerating, but it wasn’t until a few months ago, that I really started believing that something could really be wrong and that we had to find a solution.
Among the things written by her counselor was “Student complains that her shoes are not tight enough, always makes noises, demands immediate attention, etc..”. It was this kind of situation that led us to keep Kathryn home from school yesterday.
It’s difficult to define to others how my child is different when I live with her day in and day out. I interact with other children often, being a Girl Scout leader, but still, it’s all so hard to explain! I’ve gotten “Oh, that’s just a seven year old for you”, “She’s just tired” or worse “Well, she IS an only child” (ouch..). But deep down, as her mother, I know that can’t be the reason.
Rather than going into long written-out explanations, I’ll outline a few specific incidents/symptoms that have been noticed by both her teacher and myself:
- Overreaction to injury, including screaming and demanding a bandaid for small scratches. (A cousin of hers has done this too, but on a much more severe level). She does have a fear of injury and a horrendous fear of anything sharp, including butter knives. In many instances she will “play scared” and over-dramatize her fear, intentionally making herself shake. This also includes other slightly irrational fears that go just a step above the simple “There’s a monster under my bed” ordeal at bedtime.
- Inability to focus on a task. Frequently getting up and leaving her homework. She’s come home with half-complete homework because she didn’t want to finish it. For example, she brought home a spelling test in January that she opted to bow out of by laying her head on her desk. Daydreaming (gosh.. I don’t know where she got that from *whistles innocently at the sky and ventures off to browse random other webpages*)
5 minutes later…
- Constant self-lowering of self esteem. “I’ll NEVER get to go outside again!” response if I ask her to come in for dinner, which then results in crying meltdown. If she’s punished for something and a privilege is taken away (for example, TV) she will react with tears “I’m never going to watch TV again!!”
- Noises. Apparently she is making random noises at inappropriate times in class. She’s had trouble staying quiet at appropriate times since preschool, but we chalked that up to “Our kid just likes to talk”, and talk she does!! I often comment on FaceBook that I can’t find her off switch. My mother has even helped her understand when she’s gone too far with it by saying simply “Kathryn, you’re overflowing again”. Frequently, she’s then conscious of what she’s doing and will calm the noise down.. for about 8 minutes.. and then it starts up again. However, within the past 2 months, it’s become considerably worse. Though I do appreciate breaking into random singing every now and then, there are appropriate times for this, and inappropriate times for this. In the bathtub is perfectly appropriate. In the middle of a spelling test, however, is not appropriate. However, if a classmate speaks out of turn, she scolds them herself loudly, or argues the fairness over whether they have the right to speak out of turn. It’s this kind of behavior that actually got her isolated in her classroom last November. Turns out it didn’t deter her much. She greatly appreciated be solitude.
- Clothing issues.. Kathryn CANNOT wear blue jeans. She hasn’t been able to tolerate them since she was 4, saying they ‘hurt’ too much. Almost daily, we struggle with clothing, actually. Sometimes a shirt that fit fine yesterday will give her trouble today. It can be too loose on Monday, but on Thursday, the same shirt will be ‘too tight’ and she will fidget with it until we reach full-meltdown mode. Her underwear is the same. They will fit fine one day, but then the next, a pair from the same package will be ‘too tight’. It’s clothing issues that led to the ultimate meltdown yesterday…
Kathryn has been complaining for some time that her shoes aren’t tight enough, as mentioned earlier. George and I tied her tennis shoes as tight as we possibly could, yet she still would whine, attempt to adjust, and then melt down over them not feeling right. And so, on Friday, I took her shoe shopping and told her to find a pair that worked for her and gave her almost no cost limit. She found a pair at WalMart that didn’t have shoestrings, worked with velcro and a bonus feature: They lit up!! (and fit her size 3 skis, which was a bonus for dad and me). I wanted to make certain that this was what she wanted, and so I also took her to PayLess and Target to try on shoes. She was set on the pair from WalMart (another bonus, was that they were the least expensive!). I made her try them on and walk around in them. “These are what I want!”, she insisted. I asked her to explain how these shoes, which fit a little more loosely, would be better than her other shoes, which we had to tie girdle-tight 2-3 times daily. She explained that with the new shoes, she could pull the velcro herself and since she had trouble tying shoes (she’s always had trouble with that to some degree) we didn’t have to tie the velcro tight as she could just take the new shoes on and off at will without asking for help. With the shoestrings, she always had to ask for help and so, she wanted them tight as possible so she wouldn’t have to ask for re-tying all the time. This made sense to me, and actually I was mildly impressed with her ability to FINALLY explain the reasoning and also for such an intelligent reason!
On Tuesday, she put the shoes on, and again, the routine started. The shoes were too loose, and we simply couldn’t get them tight enough. We explained to her repeatedly that she chose the shoes, and had to live with her decision. We even talked about it again on Tuesday afternoon when I picked her up. She explained to me that she understood that they weren’t ever going to be “tight” like the standard tennis shoes that we ceremoniously threw away on Friday night.
Yesterday morning, however, was far worse then I ever expected. George mentioned her getting her shoes, and immediately, she started full-out crying. I was roused from a newly-found slumber after an 8-hour shift at work and came out to discuss it with her. “Do remember what we talked about yesterday?” “Yes,” she blubbered. And so, we went into the living room and put on shoes. They weren’t tight enough. She asked George to tighten them. He tried. She grabbed the velcro strips from him and in a rage, tried tightening them more. The seams on the velcro strips on her twice-worn shoes popped. Then the screaming started. She was angry that she couldn’t get them tight enough. I reached my limit quickly. Maybe too quickly. I threatened to throw the shoes away, or even simply throw the shoes. “NOOOOOOOoooooooo,” was her reaction, and into a ball she went. The downward spiral then escalated. Obviously angry, I retraced all our steps on Friday with her. I reminded her how we tried on several pairs of shoes, yet she insisted that the ones she had in her possession now were the ones she specifically defined to me were “perfect”. I reminded her of our discussion on Tuesday night and how she promised to try and observe self-control over the situation. Unfortunately, the automatic shut-down of my child had already begun. She drew up her knees and put her arms around them, occasionally rubbing her eyes in fatigue. We told her that if she was acting this way, then maybe she was too tired and that she should stay home from school. She denied being tired and expressed that she wanted to go to school because it was the day of the school cook-out. We told her that if the behavior continued, that would be the consequence. She acknowledged that she understood.
Finally, after 20 minutes, we managed to get her shoes on, and convinced her that she would have to deal with the fit because I didn’t have the shoe-funds to buy her another pair. Slowly, she got up and fidgeted with her now ill-fitting pants. We told her to go into the bathroom to grab a hairbrush. She walked 10 feet to the hallway and then broke down again, kicking the air to try to get the shoes off while screaming. I looked at George and said “We HAVE to adhere to what we told her”. I picked my screaming child up and put her into bed. The screams escalated. You would have thought we were pulling her appendages off as we plucked one shoe off of her at a time. She kicked me. I put her back into bed. Her verbalizations were as if I just killed her cat in front of her or torturing her with a hot-iron combined with the occasional “I’ll NEVER get to go to a picnic again! NO! Don’t make me stay home!”
I couldn’t stay in the room. I walked away. Crying. I had to stand firm, though. Something was going on, and I couldn’t dare subject Kathryn’s teacher to the behavior we were getting out of her yesterday morning. I called the school and simply said “Kathryn won’t be in today. She’s just not feeling right this morning”. Again, the screams came from her room, “Noooooo I’m not sick!! I’m feeling fine!!!! Noooooooo I’m soooooorrrry.. Give me another chance! You never gave me a chance to behave! PLEASE, daddy, give me another chance!!” We gave her plenty of chances. We gave her a full two days of warning. Consequence had to be enforced.
It was at this point that I decided there was no way I was going to get that much-needed sleep and called my supervisor, warning her of the potentiality of me calling out last night. She understood and then understood more as I posted the happenings on FaceBook.
George and I discussed what we needed to do. I suggested setting up an appointment with her pediatrician. George said this was why he only wanted one child, that this was the experience he had with kids in his younger years. I again assured him that this was NOT normal behavior and that I needed answers. My husband stood firm on his belief that our child should not be medicated and his feelings that perhaps a doctor would try to take a short cut and fix her issues in that manner. I understood this, respected this, and attempted to assure him that I didn’t want to medicate to fix, but rather, find the source and diagnosis first, and then go from there.
As if it was some odd sign, because the timing could NOT have been better, my phone rang. It was the school’s OT saying that the results from the Sensory Processing survey we had been handed on May 12 were in and that she wanted to set up a conference ASAP to discuss the results. Our appointment was scheduled for 8am today.
Kathryn and I then took a short nap together and she spent the day at home, in a calming atmosphere. She drew.. a lot. We discussed several times what went wrong yesterday, and each time, she expressed confusion as to why her behavior was ‘bad’, stating that her reaction was such a ‘small’ one and wasn’t that big of a deal. I’m convinced that she either a) blocked it out as seems to be the case often. She frequently tells me she doesn’t remember her fits at school and home or b) doesn’t recognize the scope of her actions and the impacts it has and actually remembers the incidents, just perceives them as minor frustrations and doesn’t understand why WE are blowing them out of proportion.
As expected, I stayed home last night and managed a few hours of sleep before we got up to go through the much-dreaded morning routine and fashion challenge. I was the one who woke her this morning and told her that I decided to stay home last night after she fell asleep and that I was here all night. She bounded up and said “Let’s get some breakfast, mommy.” As cooperative as I’ve dreamed, she ate her breakfast (one bowl of cereal, two donuts and a half-waffle), brushed her teeth voluntarily and then was dressed before I finished dressing myself. Her clothes miraculously fit perfectly today. I even asked her if they did. She adjusted her skirt slightly over her tucked-in shirt, smiled and said “Yes! They fit fine!”
I told her it was shoe time and she asked me if I could do her hair special first. We were ahead of schedule, so I had time to give her pig tails. She was on cloud nine. I had her fetch the shoes and she became briefly apprehensive. I stopped and had her take some deep breaths with me. Gleaming, she took some breaths and we put the first shoe on without incident. We repeated the same for the right foot. I told her I was proud of her and she bounded off into the kitchen to show her father how she was wearing her shoes without incident. Perplexed, he reassured her and out the door she skipped, ready to head back to school. All the way to school, we told her how great she was behaving and how we wished she acted like this every day. As she got out of the car, she skipped away, and waved hello to her principal. Even her principal looked at us perplexed, knowing the recent troubles we had. She gave us a “Who is this child??!” look. I shrugged to her and we parked the car.
It was 8:00 and time for our appointment. We were handed the aforementioned packet of paper to take to her new school to work on a 504 plan with them. We’re also armed with observations, definitions, and suggestions on how to go forth. I scheduled an appointment with her pediatrician for Monday, June 13. With luck, we’ll have more answers then.
Until then, we are to make note of negative stimulus that seems to set her off. We’re going to try applying pressure to her extremities with a brush to see if that helps.
We’re also feeling like we’re sitting on a ticking time bomb, wondering when it will go off next…