Before anyone ever uttered "The A Word", "The S Word" (Sensory Integration Dysfunction or Sensory Processing Disorder, as it is now called) was suggested. Sensory whaty? Exactly!
Since all my friends and family thought I was nuts I decided to discuss my concerns with our fabulous pediatrician (who by the way also thinks I'm nuts, but he's not allowed to say that, at least not to my face). It didn't take much convincing. If you read my first blog post about Ryan's well visit, you know the pediatrician's office is not his favorite place at age 11 and it wasn't when he was 2 either.
After discussing my concerns and seeing first hand Ryan's "reluctance" (abhorrence) with being poked, prodded and touched and hearing his blood curdling wails to assure us of his dismay, the pediatrician wanted details about his sensory "sensitivities". Well, let me get out my list (of course I had a list, hypochondriacs always have a list). After discussing the page long length of my concerns, he wrote down the words "concerns re: Sensory Integration".
Since all my friends and family thought I was nuts I decided to discuss my concerns with our fabulous pediatrician (who by the way also thinks I'm nuts, but he's not allowed to say that, at least not to my face). It didn't take much convincing. If you read my first blog post about Ryan's well visit, you know the pediatrician's office is not his favorite place at age 11 and it wasn't when he was 2 either.
After discussing my concerns and seeing first hand Ryan's "reluctance" (abhorrence) with being poked, prodded and touched and hearing his blood curdling wails to assure us of his dismay, the pediatrician wanted details about his sensory "sensitivities". Well, let me get out my list (of course I had a list, hypochondriacs always have a list). After discussing the page long length of my concerns, he wrote down the words "concerns re: Sensory Integration".
My heart sank and I thought I might throw up on my favorite pediatrician's nice shoes. Ok, it wasn't "The A Word", but a "disorder" of some type was written on a piece of paper with various instructions on who to call next (as you can see, this note has been in the trenches with me which is evidenced by it's condition. The fact that I still have it may indicate that hoarding should be added to my list of "issues"). This wasn't how it works. I'm a neurotic nut bag who "awfulizes" (my mother created that word for me, it's quite accurate) a scenario and then time after time I'm proven wrong. That's how this goes EVERY time. Apparently, the pediatrician didn't get the memo.
Never in my life have I wanted to be the Neurotic, Hypochondriac Mom who cried wolf more. I truly wanted to scream "you don't know what the he** you are talking about", flip him off and run out the door, but since my heart felt he did in fact know what he was talking about, I couldn't find the words or the hand gestures (thank God, because I now know this wonderful doctor has a son with Asperger's Syndrome and the number of times he has saved me from my own madness are endless).
I barely heard anything he said after he handed me that slip of paper. The
kind nurse who saw me silently weeping and wiping my nose on my sleeve, offered
me a tissue and Ryan a sticker. I gratefully accepted the tissue while Ryan
quickly threw the basket of stickers on the floor wailing "no, no, no" through
his hiccuppy tears. You see stickers are, well, sticky, and from the first time
he discovered that yucky sticky feeling and to this day he despises
them. We were a pitiful mess.
Dan and Kyle were waiting in the car for us to travel out of town to visit my
in-laws. I got in the car feeling broken, scared and confused. I did feel
somewhat relieved though because he did not say "The A Word". Whatever this
sensory processing thingy was at least it wasn't (whispery voice) Autism.
This was before the days of smart phones so I did not have immediate access to WebMd, symptomchecker, or diagnoseme.com (which of course are all bookmarked on
my iPhone today) so I had to wait days before my cycle of worry could come to an anxiety exploding head.
Ryan with his "sheshe" (blankie) and sippy cup of apple juice in hand, of course had completely recovered. The only evidence of the trauma was his tear streaked face and his constant self assurances of "all done, all done, all done" repeated at least 20 times (I'm not exaggerating), in the backseat. I think we can rule out a career in the
medical field for him as he thinks all medical personnel...dentists, doctors,
ophthalmologists, etc are all trying to "destroy" him.
My friend, Denial, helped me get through the weekend. "Well, it's not
'The A Word'", Denial reassured me, so all these "concerns" I had were explained away with this sensory problem. When he looked out of the corner of his eyes instead of
directly at me it was because he is so "sensitive" (or possibly because I hadn't
put makeup on yet). When he freaked out every time the baby wipes touched
his bottom (yes I had a wipe warmer, but convinced myself it was a fire hazard
and promptly disposed of it...AWEnestly, I am nuts) it was because they were too
cold for his "sensitive" little bum. When he cried hysterically at just the
sight of the vacuum cleaner and nearly broke through the door to get out of the
room when it was running it was because he had Bionic Woman sensitive hearing
(Wow, maybe he will be famous!) not because he was autistic.
So, this sensitivity must also explain why he would only eat certain foods, he had extra sensitive taste buds (it surely was not my cooking). Of course we all know that "sensitive" kids tend to be bright, so this must be why he melted down if I ever varied our routine in the grocery store. If I skipped aisle 5 or heaven forbid, I went to aisle 6 before aisle 5 he would get highly agitated, crying out whichever aisle number I
missed. It wasn't because I varied our routine and he craved sameness, it was
because he was so smart and knew I would be devastated without Miracle Whip this
week. It was all making sense (no pun intended)! Yes, I do so love my BFF
Denial.
Imagine how betrayed I felt by my BFF when I finally had access to a computer
and Googled, "Sensory Processing Disorder" and found it was often linked to that
freaking "A Word"! Sensory Processing Disorder, previously known as
Sensory Integration Dysfunction is still somewhat controversial. Some experts
believe it is a condition in and of itself, while others believe it is a feature
of various other diagnoses, the most common being (whispery voice) autism.
What I read was that it was a neurological disorder that caused difficulties in
taking in, processing and responding to sensory stimuli both in the environment
and from within one's own body. Well, sure that sucks, but what I still wanted
to know was if the DSM-IV, the holy grail of "Mental Disorders", does not
recognize SPD as a diagnosis, how could a hypochondriac who relied on all
medical answers to be black and white, preferably, "no you don't have (insert latest disease obsession here)", kind of black and white, accept this as a diagnosis for my Ryan?
I would love to tell you that since I'm such a great mother, all that I cared
about was getting my beautiful, lovable boy help and that it didn't matter what
we called "it", but I wouldn't be being AWEnest, because what "it" was called
mattered a lot, like '"checking the over 20 million websites on autism" a lot.
After spending years as a juvenile probation officer and knowing the
significance and impact of a "label", what we called "it" was vital to us, and most importantly to my son and his future.
You know how your mother always knew which friends were bad for you? Well, if my mother would have known how tight Denial and I had become, she would have warned me to stay away. This time, I didn't need my mother to tell me that it was time to get AWEnest and accept that not only was Denial bad for me, Denial was hurting this beautiful boy and it was my job to protect him.
And just like the bad influence, partying, cursing, school skipping friend who wanted you to sneak out of your house to go to a party, I knew that Denial was leading me down the wrong path, but, oh how I enjoyed hangin' with Denial so much more than my new Class President, Honor Roll, brown nosing friend AWEnesty. With that said, Mama bear mode kicked into high gear as I slowly, oh so very slowly, began breaking ties with my BFF, Denial, and slowly started to accept the path that was laying out in front of me.
kind nurse who saw me silently weeping and wiping my nose on my sleeve, offered
me a tissue and Ryan a sticker. I gratefully accepted the tissue while Ryan
quickly threw the basket of stickers on the floor wailing "no, no, no" through
his hiccuppy tears. You see stickers are, well, sticky, and from the first time
he discovered that yucky sticky feeling and to this day he despises
them. We were a pitiful mess.
Dan and Kyle were waiting in the car for us to travel out of town to visit my
in-laws. I got in the car feeling broken, scared and confused. I did feel
somewhat relieved though because he did not say "The A Word". Whatever this
sensory processing thingy was at least it wasn't (whispery voice) Autism.
This was before the days of smart phones so I did not have immediate access to WebMd, symptomchecker, or diagnoseme.com (which of course are all bookmarked on
my iPhone today) so I had to wait days before my cycle of worry could come to an anxiety exploding head.
Ryan with his "sheshe" (blankie) and sippy cup of apple juice in hand, of course had completely recovered. The only evidence of the trauma was his tear streaked face and his constant self assurances of "all done, all done, all done" repeated at least 20 times (I'm not exaggerating), in the backseat. I think we can rule out a career in the
medical field for him as he thinks all medical personnel...dentists, doctors,
ophthalmologists, etc are all trying to "destroy" him.
My friend, Denial, helped me get through the weekend. "Well, it's not
'The A Word'", Denial reassured me, so all these "concerns" I had were explained away with this sensory problem. When he looked out of the corner of his eyes instead of
directly at me it was because he is so "sensitive" (or possibly because I hadn't
put makeup on yet). When he freaked out every time the baby wipes touched
his bottom (yes I had a wipe warmer, but convinced myself it was a fire hazard
and promptly disposed of it...AWEnestly, I am nuts) it was because they were too
cold for his "sensitive" little bum. When he cried hysterically at just the
sight of the vacuum cleaner and nearly broke through the door to get out of the
room when it was running it was because he had Bionic Woman sensitive hearing
(Wow, maybe he will be famous!) not because he was autistic.
So, this sensitivity must also explain why he would only eat certain foods, he had extra sensitive taste buds (it surely was not my cooking). Of course we all know that "sensitive" kids tend to be bright, so this must be why he melted down if I ever varied our routine in the grocery store. If I skipped aisle 5 or heaven forbid, I went to aisle 6 before aisle 5 he would get highly agitated, crying out whichever aisle number I
missed. It wasn't because I varied our routine and he craved sameness, it was
because he was so smart and knew I would be devastated without Miracle Whip this
week. It was all making sense (no pun intended)! Yes, I do so love my BFF
Denial.
Imagine how betrayed I felt by my BFF when I finally had access to a computer
and Googled, "Sensory Processing Disorder" and found it was often linked to that
freaking "A Word"! Sensory Processing Disorder, previously known as
Sensory Integration Dysfunction is still somewhat controversial. Some experts
believe it is a condition in and of itself, while others believe it is a feature
of various other diagnoses, the most common being (whispery voice) autism.
What I read was that it was a neurological disorder that caused difficulties in
taking in, processing and responding to sensory stimuli both in the environment
and from within one's own body. Well, sure that sucks, but what I still wanted
to know was if the DSM-IV, the holy grail of "Mental Disorders", does not
recognize SPD as a diagnosis, how could a hypochondriac who relied on all
medical answers to be black and white, preferably, "no you don't have (insert latest disease obsession here)", kind of black and white, accept this as a diagnosis for my Ryan?
I would love to tell you that since I'm such a great mother, all that I cared
about was getting my beautiful, lovable boy help and that it didn't matter what
we called "it", but I wouldn't be being AWEnest, because what "it" was called
mattered a lot, like '"checking the over 20 million websites on autism" a lot.
After spending years as a juvenile probation officer and knowing the
significance and impact of a "label", what we called "it" was vital to us, and most importantly to my son and his future.
You know how your mother always knew which friends were bad for you? Well, if my mother would have known how tight Denial and I had become, she would have warned me to stay away. This time, I didn't need my mother to tell me that it was time to get AWEnest and accept that not only was Denial bad for me, Denial was hurting this beautiful boy and it was my job to protect him.
And just like the bad influence, partying, cursing, school skipping friend who wanted you to sneak out of your house to go to a party, I knew that Denial was leading me down the wrong path, but, oh how I enjoyed hangin' with Denial so much more than my new Class President, Honor Roll, brown nosing friend AWEnesty. With that said, Mama bear mode kicked into high gear as I slowly, oh so very slowly, began breaking ties with my BFF, Denial, and slowly started to accept the path that was laying out in front of me.
No wonder Denial was my BFF. Who could ever label this sweet, happy face with any kind of "A word" except Amazing!!
RSS Feed
