Here she can be such a contradiction. She does ask us to be quiet a lot. She cannot stand either me or Melanie singing, though we're not really any worse than anyone else. And sometimes she's just in a snit and can't even stand to hear us talk. Her play with her baby dolls frequently involves the whole household needing to adhere to a strict silence so her "baby" can "sleep", and breaches of this order can result in reactions equal to that of mothers of colicy infants in similar situations.
On the other hand, she makes so much noise herself that I sometimes fear I'll lose my mind! She has not really ever learned to whisper, and has none of the usual social inhibition that others naturally feel in quieter environments. She loves musical instruments and what she lacks in skill with them she makes up for in gusto and persistence.
It's one of the ironies of SPD that the very stimulation they cannot stand from the outside, they often can't get enough of if they create it themselves. It seems like they're experimenting with that type of stimuli in ways that feels safe because they are controlling it. It's also known that sensory disregulation often means that they don't experience the same stimuli the same way every time. What is too loud today may seem too soft to hear tomorrow. That's what's so stressful for these kids, their world is completely unpredictable!
Friday, March 11, 2011
Symptom- Bothered/distracted by background environmental sounds; i.e., lawn mowing or outdoor construction.
It's funny to me how some of the things they list just as examples fit Kate exactly. Living in a apartment complex, there is a rather larger mower used by the groundskeeper which can be heard from a long way off. As soon as she hears it Katie insists on closing all the windows and turning up the TV to cover up the sound. It's not just that it's loud though, she's actually afraid of it and refuses to go outside while it's running.
Last summer the complex had all the apartment balconies replaced, creating very close construction noises. She was terrified by their footsteps on the roof, but the couple days they were actually working on our own deck we had to leave the house. She was in perpetual fight-or-flight mode from the moment they arrived 'til they went home for the night. Even seeing what they were doing that made all the noise didn't help any, she just couldn't cope. Simple little things you never even think of with typical children.
Last summer the complex had all the apartment balconies replaced, creating very close construction noises. She was terrified by their footsteps on the roof, but the couple days they were actually working on our own deck we had to leave the house. She was in perpetual fight-or-flight mode from the moment they arrived 'til they went home for the night. Even seeing what they were doing that made all the noise didn't help any, she just couldn't cope. Simple little things you never even think of with typical children.
Symptoms: Fearful of the sound of a flushing toilet (especially in a public restroom), vacuum, hairdryer or dog barking. Excessively startled by loud or unexpected sounds.
All of the above! For a long time Kate refused to flush the toilet when she went, and still skips it quite frequently. But public restrooms are by far the worst. The hollow sound in multi-stall restrooms seems to echo and amplify the sound, causing her to scream.
These newer automatic flushing toilets add a whole new element of fear, as she's so small the sensor seems to lose her and they wind up flushing while she's still sitting! Oh the horror! The force with which they flush has her convinced she's about to be sucked right down. At the library one day she had to go, but it kept flushing prematurely, so she's hop off and claim to be done, but then still have to go about 5 minutes later, so we'd try again, but she'd get freaked before she was finished, again...after about 4-5 attempts we just had to go home so she could finish going in peace.
Hand dryers in restrooms are another source of panic, primarily because of the noise, but also because of the hot blast of air. She also hides when I use my hairdryer and the vacuum.
We got a beagle a year ago, and thankfully she's not too much of a barker, because Katie screams and practically jumps out of her skin at every little yelp, and nearly hyperventilates if Tess actually barks. This extreme reaction to loud sounds was one of the first things that got me thinking of SPD. Sometimes it's not even that a sound is too loud as much as if it's unexpected. Where another kids might jump, Katie's whole body convulses and she's in tears.
These newer automatic flushing toilets add a whole new element of fear, as she's so small the sensor seems to lose her and they wind up flushing while she's still sitting! Oh the horror! The force with which they flush has her convinced she's about to be sucked right down. At the library one day she had to go, but it kept flushing prematurely, so she's hop off and claim to be done, but then still have to go about 5 minutes later, so we'd try again, but she'd get freaked before she was finished, again...after about 4-5 attempts we just had to go home so she could finish going in peace.
Hand dryers in restrooms are another source of panic, primarily because of the noise, but also because of the hot blast of air. She also hides when I use my hairdryer and the vacuum.
We got a beagle a year ago, and thankfully she's not too much of a barker, because Katie screams and practically jumps out of her skin at every little yelp, and nearly hyperventilates if Tess actually barks. This extreme reaction to loud sounds was one of the first things that got me thinking of SPD. Sometimes it's not even that a sound is too loud as much as if it's unexpected. Where another kids might jump, Katie's whole body convulses and she's in tears.
Symptoms- Distracted (bothered) by sounds not normally noticed by others.
- Kate can be acutely aware of the humming of some electronics or ticking of clocks and can find it hard to ignore them once she has noticed. Frequently an excuse for not being able to fall asleep. She is terrifies of bugs, and nearly had a heart attack when she could hear a fly near her bedroom window that I could not locate and kill.
Occupational Therapy Evaluation
I don't remember what finally made me pick up the phone and make the initial appointment for the OT evaluation, but it wasn't automatic, I think I still didn't understand what difference the therapy would make. But eventually we got in to a rehab clinic in Maple Grove and met our therapist, whose name also happened to be Katie, and was therefore dubbed "the Katie-lady". This initial evaluation was in January 2010.
Regarding Kate's behavior during initial evaluation the therapist's reports states "Short attention span. Constant movement, difficulty to engage in structured activities. Patient needed movement breaks to sustain attention to tasks."
Regarding motor skills, the report noted that Katie "used compensatory movements to maintain balance" on one foot at a time, indicating "likely poor core/ upper body strength" and that her manual dexterity tested below average. "She is lacking both strength and coordination in her hands and fingers which is limiting her independence with dressing tasks."
Regarding visual-motor integration, Kate's visual perception tested in only the 6th percentile, and motor control only in the 19th, indicating "Katie demonstrates significant delay in fine motor integration skills. She is lacking in visual perception as well as motor coordination. She also appears to have weak hands which would limit her coordination skills." It was noted that she used a "thumb-wrap" grasp for writing, which "offers more stability and is often used by children with weak hand muscles."
The Sensory Profile questionnaire I filled out indicated a definite difference in Kate's Auditory, Touch and Vestibular processing, as well as in her Emotional/Social responses, the Behavioral outcomes of sensory processing, Emotional Reactivity and Sensory Sensitivity, with most of her scores in these areas only half of the average. The report states, "These sensory processing issues also affect her ability to get along and play with peers as she has the need to always be in control of her environment so as to limit unexpected noise and touch. These issues also affect her ability to attend, learn and improve her fine motor skills."
Based on this evaluation, treatment goals were set as follows:
-Katie would engage in upper extremity strength activities 3 minutes without fatigue
- would demonstrate appropriate tripod grasp on pencil without adaptive equipment
- would demonstrate age appropriate motor control by completing a certain type of maze
- would be able to attend to therapist directed activity at the table for 5 minutes
- would be able to follow directions to complete a 3 step obstacle course, after demonstration
Grooming Groans
From infancy Katie had a serious aversion to having her nails trimmed. (Probably not helped at all by the time I cut a huge chunk out of the tip of her finger while she was flailing around trying to elude me, poor thing!) At first I thought it was just because her little infant nail beds were a little irregular, and they'd get better as she grew. But it didn't, she continued to scream like I was taking off the fingers (or toes) themselves. I started having to clip them while she was asleep.
Combing/brushing hair was much the same. Thank goodness she was so bald for so long, because as soon as there was anything to comb out it was like torture. She wanted to have long "princess" hair, but couldn't stand for me to touch it. As mentioned in the post about bathing, she absolutely could not cope with having her hair washed either, so her scalp got a thick brown waxy build up all over it. It was truly disgusting and embarrassing.
She never had a real haircut at a salon until she was almost 4, because I knew she'd flip out if anyone tried to come near her head. We finally managed it by going to Kid's Cuts, where she could be pampered and distracted by movies. Shampooing there, of course, was out of the question, as was the noisy hair dryer. But all in all we managed without too many tears. She still cries every morning when I brush out her hair, and though her fingernails aren't so sensitive anymore, she still swears it hurts when I have to do her toes.
Combing/brushing hair was much the same. Thank goodness she was so bald for so long, because as soon as there was anything to comb out it was like torture. She wanted to have long "princess" hair, but couldn't stand for me to touch it. As mentioned in the post about bathing, she absolutely could not cope with having her hair washed either, so her scalp got a thick brown waxy build up all over it. It was truly disgusting and embarrassing.She never had a real haircut at a salon until she was almost 4, because I knew she'd flip out if anyone tried to come near her head. We finally managed it by going to Kid's Cuts, where she could be pampered and distracted by movies. Shampooing there, of course, was out of the question, as was the noisy hair dryer. But all in all we managed without too many tears. She still cries every morning when I brush out her hair, and though her fingernails aren't so sensitive anymore, she still swears it hurts when I have to do her toes.
Bathing Battles
In her journal I wrote that Katie enjoyed water play throughout the summer before her second birthday. I can't remember when or how things started to go south, but within in a few months bath time became an all out war. Katie developed an intense dread of bathing, an abject terror of the water or even the suggestion of it. I wondered if something traumatic happened at their dad's house to cause the sheer terror, but I never heard of anything.
When bath time came around Kate would absolutely LOSE IT! I always ran the water before she came into the bathroom to avoid the rushing water being loud and frightening, and I never filled it very full at all. But the minute Kate saw the tub she just freaked out. As I lifted her over the edge of the tub she'd pull her legs all the way up to her body in a tiny ball to avoid any part of her touching the water. She'd cling to me, scratching and clawing and trying to climb out of the tub, screaming frantically for her life. It was unbelievable! Heartbreaking! As if I was dropping her into acid or boiling water! My ears would ring for half an hour after it was over. And it took her almost that long to recover from the sobbing and hyperventilating.
Thankfully Katie had very little hair, so it didn't need frequent shampooing. I resorted to basically just giving her sponge baths, saving tub baths for rare occasions. When we moved to our apartment I hoped maybe things might be a bit better, (maybe Mom's bathroom had something to do with the terror?) but no such luck. Every time I gave her a bath I feared a knock on the door from child services, imaging what it must sound like to the neighbors. Gradually, the terror of the water itself ebbed, as long as I kept it very shallow, but shampooing continued to be a nightmare. She developed horrible cradle cap because I just could not wash her hair frequently enough or well enough. It became really disgusting and embarrassing.
When bath time came around Kate would absolutely LOSE IT! I always ran the water before she came into the bathroom to avoid the rushing water being loud and frightening, and I never filled it very full at all. But the minute Kate saw the tub she just freaked out. As I lifted her over the edge of the tub she'd pull her legs all the way up to her body in a tiny ball to avoid any part of her touching the water. She'd cling to me, scratching and clawing and trying to climb out of the tub, screaming frantically for her life. It was unbelievable! Heartbreaking! As if I was dropping her into acid or boiling water! My ears would ring for half an hour after it was over. And it took her almost that long to recover from the sobbing and hyperventilating.
Thankfully Katie had very little hair, so it didn't need frequent shampooing. I resorted to basically just giving her sponge baths, saving tub baths for rare occasions. When we moved to our apartment I hoped maybe things might be a bit better, (maybe Mom's bathroom had something to do with the terror?) but no such luck. Every time I gave her a bath I feared a knock on the door from child services, imaging what it must sound like to the neighbors. Gradually, the terror of the water itself ebbed, as long as I kept it very shallow, but shampooing continued to be a nightmare. She developed horrible cradle cap because I just could not wash her hair frequently enough or well enough. It became really disgusting and embarrassing.
Potty Training
Melanie was fully potty trained by 20 months. I knew kids each had their own time schedules so I didn't put any pressure on Kate, but she got interested fairly early just from observing Melanie use the bathroom. We got her an Elmo potty that said encouraging phrases when she sat (in English & Spanish!) and she liked it at first, sitting on it all the time, in her clothes. But she did not like to sit without her diaper on, so that was a bit problematic, though I just let it go, figuring she'd get around to it eventually. We moved into our own apartment and got a special child seat that could sit on the regular toilet seat since she wanted to be a big girl. But she refused to use it or the Elmo seat anymore.
She was now able to come tell me when her diaper was wet or dirty and insisted on being changed immediately, but still refused to sit on either potty. She became familiar with her body's signals and would go in a corner to hide while having bowel movements, but refused to come do it in the bathroom. We got an Elmo Uses the Potty DVD, which she loved, but no inspiration. I recognized that she was a very willful child, so I just let it be and never put any pressure on her, knowing she would just dig in her heels if I did.
Her 3rd birthday came and went, and about a week later she walked up and told me she didn't need diapers anymore, because she was a big girl now. I seized the moment and took her straight to her dresser to pick out a pair of her pretty new princess panties which had been waiting there for her. She picked out Sleeping Beauty, her absolute favorite and "best friend" at the time, and was extremely cautious the rest of the day to keep Aurora from getting wet. Those first 2-3 days, we set a system by which she got to have a Skittle every time she sat on the potty (to encourage trying) and another one if she actually went. She knew enough to stop her urine flow after a little dribble, wipe and leave the bathroom, claiming her Skittle, and then come back in 15 minutes to do it again! She only had one accident that day, and only one the next, and was through with diapers just like that!
Stubborn little dickens! Her ability to work the system for as much candy as possible proved she was more than capable of controlling things and must have been for a while, she just didn't want to be bothered until she was good and ready!
She was now able to come tell me when her diaper was wet or dirty and insisted on being changed immediately, but still refused to sit on either potty. She became familiar with her body's signals and would go in a corner to hide while having bowel movements, but refused to come do it in the bathroom. We got an Elmo Uses the Potty DVD, which she loved, but no inspiration. I recognized that she was a very willful child, so I just let it be and never put any pressure on her, knowing she would just dig in her heels if I did.
Her 3rd birthday came and went, and about a week later she walked up and told me she didn't need diapers anymore, because she was a big girl now. I seized the moment and took her straight to her dresser to pick out a pair of her pretty new princess panties which had been waiting there for her. She picked out Sleeping Beauty, her absolute favorite and "best friend" at the time, and was extremely cautious the rest of the day to keep Aurora from getting wet. Those first 2-3 days, we set a system by which she got to have a Skittle every time she sat on the potty (to encourage trying) and another one if she actually went. She knew enough to stop her urine flow after a little dribble, wipe and leave the bathroom, claiming her Skittle, and then come back in 15 minutes to do it again! She only had one accident that day, and only one the next, and was through with diapers just like that!
Stubborn little dickens! Her ability to work the system for as much candy as possible proved she was more than capable of controlling things and must have been for a while, she just didn't want to be bothered until she was good and ready!
Early morning blowup
Rough start this morning for seemingly no reason.
Katie has been sleeping in my bed for a couple weeks now since she was really sick and fussing all night. Then, once she was better, she continued to want to sleep in my bed, and actually goes to bed voluntarily and stays in the bed in there, so I've let her stay rather than have our nightly battles. She's easy to sleep with because she doesn't like to be touched in her sleep (and neither do I!) so she stays as far away from me as physically possible, so it's almost like she's not even there. Poor Melanie is jealous, as she likes to snuggle and always wants to sleep with me, but she is very clingy at night, and thrashes and kicks so I get no sleep! Trying to point out to her that at least this way it's like she has her own bedroom.
Anyhoo- with the brighter light in the mornings, Kate's been waking plenty early (6:30-7:00 instead of 8:00 or later). 6:50 this morning she decided she wanted the Kid's Cuisine frozen meal she had refused last night. I, however, was not willing to make said meal for breakfast and told her she could have it for dinner. This was highly objectionable to Katie and she absolutely lost it! She sat on the bed and screamed at the top of her lungs! "I want it! I want it! I want it!' and just plain all-out blood curdling scream. I picked her up and placed her in the hall, telling her she could not be in my bed if she chose to act that way. So she screamed even more forcefully, as I closed my eyes to pretend to ignore her.
In a few seconds she gave up on impressing me and went into the other room to scream at Melanie, hoping to get a reaction I'd have to respond to. Mel did well though and didn't get sucked in (way to go baby!) and pretty soon Kate was back in my room, complaining that she just could not stop crying, which I did not fall for, and eventually asking me not to say anything if/when she calmed herself down. This is quite an improvement from a year ago at this time when she would have carried this fit on for an hour or more. Sucks that it happens at all, and in the moment my eardrums were about to burst it felt like an eternity, but she is finally learning to calm down on her own in a comparably short time.
This is one of the incidents where I can't see a clear connection to the SPD, she shouldn't have been overwhelmed first thing in the morning. These incidents still make me think there might be something more underlying the SPD, and still shake my self confidence as a parent, wondering if she really is a brat too. Believe me, I don't have all the answers yet, this blog is about my ongoing journey.
Katie has been sleeping in my bed for a couple weeks now since she was really sick and fussing all night. Then, once she was better, she continued to want to sleep in my bed, and actually goes to bed voluntarily and stays in the bed in there, so I've let her stay rather than have our nightly battles. She's easy to sleep with because she doesn't like to be touched in her sleep (and neither do I!) so she stays as far away from me as physically possible, so it's almost like she's not even there. Poor Melanie is jealous, as she likes to snuggle and always wants to sleep with me, but she is very clingy at night, and thrashes and kicks so I get no sleep! Trying to point out to her that at least this way it's like she has her own bedroom.
Anyhoo- with the brighter light in the mornings, Kate's been waking plenty early (6:30-7:00 instead of 8:00 or later). 6:50 this morning she decided she wanted the Kid's Cuisine frozen meal she had refused last night. I, however, was not willing to make said meal for breakfast and told her she could have it for dinner. This was highly objectionable to Katie and she absolutely lost it! She sat on the bed and screamed at the top of her lungs! "I want it! I want it! I want it!' and just plain all-out blood curdling scream. I picked her up and placed her in the hall, telling her she could not be in my bed if she chose to act that way. So she screamed even more forcefully, as I closed my eyes to pretend to ignore her.
In a few seconds she gave up on impressing me and went into the other room to scream at Melanie, hoping to get a reaction I'd have to respond to. Mel did well though and didn't get sucked in (way to go baby!) and pretty soon Kate was back in my room, complaining that she just could not stop crying, which I did not fall for, and eventually asking me not to say anything if/when she calmed herself down. This is quite an improvement from a year ago at this time when she would have carried this fit on for an hour or more. Sucks that it happens at all, and in the moment my eardrums were about to burst it felt like an eternity, but she is finally learning to calm down on her own in a comparably short time.
This is one of the incidents where I can't see a clear connection to the SPD, she shouldn't have been overwhelmed first thing in the morning. These incidents still make me think there might be something more underlying the SPD, and still shake my self confidence as a parent, wondering if she really is a brat too. Believe me, I don't have all the answers yet, this blog is about my ongoing journey.
Subscribe to:
Posts (Atom)