The holidays are certainly a time of stress for our family, but specifically for Shelby (and more and more Brody too). The change in routine, the crowds of people -- in our house--, the excitement that her brain just can't grasp a handle on, people touching her things, people wanting her to 'be quiet' or worse "just sit still".
Thankfully I came across an amazing mother and blogger, Hartley. Hartley has 3 amazing children...she blogs about her family's sensational life at her blog Hartley's Life with 3 Boys. She can also be found on facebook under the same name...check her out. Today on Facebook she posted "Do you struggle with family visits during the holidays?"... Hartley's mother Helen Nickelson wrote a post on Hartley's blog and I wanted to share pieces of it here with you. You can find the whole piece on Hartley's blog HERE. Here are just the highlights that I wanted to share that REALLY stuck out to me. Please if you know a sensational child... take the time to read the article in full at Hartley's blog. Thank you!!
Believe your child. Firstly and most importantly, believe your daughter or son when they tell you what challenges their child(ren) face and what accommodations they need. Seriously, they KNOW what’s going on. They are not making this stuff up. I realize it’s difficult because you don’t see it. You’re not there every day and most kids can “keep it together” for short periods…like when they are with their grandparents.
Understand that your child and her family may not be able to come to your home for holidays because the trip would be nearly impossible for your grandchild. The change in routine, the lack of structure may be too much. Understand, too, that when you come to visit, you may need to stay in a hotel, because the disruption could be too much. There are many things we need to understand.
Understand when her child has a meltdown, that it is much different than a “fit” and is NOT the result of bad parenting or lack of discipline. And it shouldn’t be embarrassing to anyone other than the judgmental bystander. You know, the one who shakes her head or rolls her eyes. One day, you won’t even notice that person. That will be, as Oprah would say, an “aha moment” for you. I hope it comes quickly for you. It is a wonderful feeling.
Remember, this is not your problem to solve. Your child is fully capable and the best person to know what needs to be done. Your job is to listen, to actually hear what she is saying, to be there for her, both emotionally and physically. Understand when she tells you they cannot do something, or go somewhere, you desperately wanted the whole family to do, that she isn’t trying to punish you; that she is only doing what’s needed to keep her child calm & regulated. Don’t show your disappointment, it only makes her feel worse.
Acceptance. Finally, accept that life is what it is. Just because it’s different than what you imagined or experienced as a child or parent, doesn’t make it less than. If your grandchild is comfortable, calm and regulated, any experience will be enjoyable for him and that will make it enjoyable for his parents -- and THAT should make it enjoyable for you.
All priting in italics is taken directly from the article by Helen Nickelson with is posted on the blog Hartley's Life with 3 Boys. For the Complete article pleas visit HERE.
A special thank you to both Hartley and her mother, Helen for sharing this with us. The two of you are amazing and I wish I personally had more people like the two of you in my life and in the lives of my sensational children. THANK YOU!!!!
Showing posts with label sensory processing disorder. Show all posts
Showing posts with label sensory processing disorder. Show all posts
Monday, November 15, 2010
Wednesday, March 24, 2010
Saturday, February 20, 2010
SPD - please help in recognizing this disorder.
Many of you may not know that SPD (Sensory Processing Disorder) hasn't been recogzined as an official disorder, so it makes it VERY difficult for parents to get treatment.
By now, you may know that Sensory Processing Disorder (SPD) is on the list of conditions still under consideration for the DSM-5, the reference work that physicians and others use to diagnose mental health disorders and many developmental disorders.
Did you know the American Psychiatric Association (APA) is soliciting comments on recognizing these conditions?
The Sensory Processing Disorder Foundation is coordinating an international comment campaign to show the APA there is widespread, informed support for including SPD in the revised Diagnostic and Statistical Manual that will be published in 2013 (DSM-5).
YOU can help promote recognition of Sensory Processing Disorder by submitting a comment on the APA website!
To make commenting as simple as possible, we have created a web page that includes instructions for reaching the comment area of the APA site. You’ll also find topic suggestions/sample language for different groups of supporters (parents, OTs, physicians, diagnosticians, etc.) based on what we know the APA is considering in their final deliberations.
Use our ideas or use your own - it doesn't matter. What matters is commenting. The most persuasive comments will be the ones that provide concrete, evidence-based information and/or observation based on your own personal or clinical experience.
Every letter counts! The deadline for commenting is April 20, but please act now. Numbers matter. A mountain of immediate, supportive comments will make a significant impression on the committee.
And please help us pass the word! Forward this message and/or the link to our comment page to colleagues, physicians (especially important!), family, teachers, clients, friends - anyone in a position to make an informed comment on the value of recognizing Sensory Processing Disorder in DSM-5. If you have a website, blog or social networking page, those are great places to get the word out, too. The more people who comment supportively, the better.
For years, people have asked us, “What can I do to help get Sensory Processing Disorder into the DSM?” Now is the time when individuals everywhere can help and what they do will matter. Support the movement to get Sensory Processing Disorder included in the DSM-5. Post your comments today. This is our last chance to be included in the DSM until 2025!
By now, you may know that Sensory Processing Disorder (SPD) is on the list of conditions still under consideration for the DSM-5, the reference work that physicians and others use to diagnose mental health disorders and many developmental disorders.
Did you know the American Psychiatric Association (APA) is soliciting comments on recognizing these conditions?
The Sensory Processing Disorder Foundation is coordinating an international comment campaign to show the APA there is widespread, informed support for including SPD in the revised Diagnostic and Statistical Manual that will be published in 2013 (DSM-5).
YOU can help promote recognition of Sensory Processing Disorder by submitting a comment on the APA website!
To make commenting as simple as possible, we have created a web page that includes instructions for reaching the comment area of the APA site. You’ll also find topic suggestions/sample language for different groups of supporters (parents, OTs, physicians, diagnosticians, etc.) based on what we know the APA is considering in their final deliberations.
Use our ideas or use your own - it doesn't matter. What matters is commenting. The most persuasive comments will be the ones that provide concrete, evidence-based information and/or observation based on your own personal or clinical experience.
Every letter counts! The deadline for commenting is April 20, but please act now. Numbers matter. A mountain of immediate, supportive comments will make a significant impression on the committee.
And please help us pass the word! Forward this message and/or the link to our comment page to colleagues, physicians (especially important!), family, teachers, clients, friends - anyone in a position to make an informed comment on the value of recognizing Sensory Processing Disorder in DSM-5. If you have a website, blog or social networking page, those are great places to get the word out, too. The more people who comment supportively, the better.
For years, people have asked us, “What can I do to help get Sensory Processing Disorder into the DSM?” Now is the time when individuals everywhere can help and what they do will matter. Support the movement to get Sensory Processing Disorder included in the DSM-5. Post your comments today. This is our last chance to be included in the DSM until 2025!
Tuesday, December 8, 2009
Sensory Processing Disorder....
this story was originally printed in TIME magazine in November 2007... Please read it and help spread awareness of this condition that is currently 'just' a list and not an actual diagnosis. If you'd like to be connected to the actual printed story please click HERE
"The Next Attention Deficit Disorder?" by Claudia Wallis November 2007
With a teacher for a mom and a physician's assistant for a dad, Matthew North had two experts on the case from birth, but his problems baffled them both. "Everything was hard for Matthew," says Theresa North, of Highland Ranch, Colo. He didn't speak until he was 3. In school, he'd hide under a desk to escape noise and activity. He couldn't coordinate his limbs well enough to catch a big beach ball.
Matthew, now 10, was evaluated for autism and attention deficit hyper-activity disorder, but the labels didn't fit. "We filled out those ADHD questionnaires a million times, and he always came out negative," Theresa recalls. "When we found this place, I cried. It was the first time someone said they could help."
This place is the Sensory Therapies and Research [STAR] Center, just south of Denver, which treats about 50 children a week for a curious mix of problems. Some can't seem to get their motors in gear: they have low muscle tone and a tendency to respond only minimally to conversation and invitations to play. Others are revved too high: they annoy other children by crashing into them or hugging too hard. Many can't handle common noises or the feel of clothing on their skin. A number just seem clumsy. Adults can remember kids like these from their own childhood. They were the ones called losers, loners, klutzes and troublemakers. At STAR Center they wear a more benign label: children with sensory processing disorder (SPD).
Never heard of it? You're in good company. Neither have many pediatricians, neurologists, psychologists and teachers. But in the parallel universe of occupational therapy, which focuses on the more primal "occupations" of life--dressing, eating, working, playing--SPD is commonly treated. Last month, at a conference on SPD in New York City, 350 occupational therapists (OTs) and others gathered to hear about the latest research and therapies.
OTs have been treating SPD, also known as sensory integration dysfunction, since 1972, when A. Jean Ayres, a University of Southern California (USC) psychologist and occupational therapist, published the first book on the condition. As defined by Ayres and others, SPD is a mixed bag of syndromes, but all involve difficulty handling information that comes in through the senses--not merely hearing, sight, smell, taste and touch, but also the proprioceptive and vestibular senses, which tell us where our arms and legs are in relation to the rest of us and how our body is oriented toward gravity. Some kids treated for SPD can't maintain an upright position at a desk; some are so sensitive to touch that they shriek when their fingernails are trimmed or if they get oatmeal on their face. Sounds and smells can be overwhelming. When lawn mowers roar outside the home of Lizzie Cave, 4, a STAR child, she's been known to vomit.
Families that find their way to the STAR Center and other groups that treat SPD typically have traveled a long road to get there. Their common refrains: My doctor doesn't believe in SPD; teachers can't handle it; insurance won't pay for therapy. There's good reason for that. SPD is not listed in medical texts or in the Diagnostic Statistical Manual (DSM), the bible of psychiatric disorders. Doctors acknowledge sensory issues as a common feature of autism and a frequent feature of ADHD but not as a stand-alone disorder. Lucy Jane Miller, a former protégé of Ayres and head of the STAR Center, is spearheading a campaign to change that. She has organized a national effort to have SPD added to the next edition of the DSM, the fifth, due out in 2012. Earning a spot in the DSM V would make it easier for researchers to win grants, kids to get accommodations at school and families to be reimbursed for a course of treatment, which, at the STAR Center, often costs $4,000.
To receive recognition, advocates must provide persuasive evidence that "this is not just part of autism or ADHD, that it's a better definition of what these kids are experiencing," says Dr. Darrel Regier, director of research for the American Psychiatric Association and vice chair of the DSM V task force. What's needed, says Regier, is a body of peer-reviewed studies that defines "a core set of symptoms, a typical clinical course" and, if possible, good treatment data.
SPD research so far is provocative but limited. "It's hard to get grants for a disorder that doesn't exist," laments Miller, whose recent book, Sensational Kids, offers a guide to both research and treatment. Many studies are flawed by vague criteria for identifying the condition, samples that include kids with other disorders, and an utter lack of standardized treatment.
But Miller and others have been slowly building a research base. Studies at her SPD Research Institute, adjacent to the STAR clinic, have identified neurological differences between children with sensory-processing problems and typical kids. In one set of experiments, electrodes are attached to children's hands to measure nervous-system activity in response to a series of stimuli that include a siren, a powerful wintergreen scent, the brush of a feather against the cheek--each repeated eight times. A healthy child will show a strong electrodermal response--basically a measure of sweating or stress--to the first exposure but will quickly habituate, showing little response to the final repetitions. Kids with one brand of SPD jump through the roof with every repetition. "It's as if they are stuck in fight-or-flight mode," says researcher Sarah Schoen.
Other experiments at the University of Colorado have found that kids with sensory problems have atypical brain activity when simultaneously exposed to sound and touch. And a 2006 study of twins at the University of Wisconsin gave evidence that hypersensitivity to noise and touch have a strong genetic component.
No one can say with certainty how many kids are severely affected by sensory problems, though preliminary work by Miller suggests it may be 1 in 20. A critical question is where to draw the line between what's normal and what's pathological (see sidebar). Studies conducted by Alice Carter, professor of psychology at the University of Massachusetts, Boston, suggest that 40% of children ages 7 to 10 are so sensitive to touch that tags in clothing annoy them, and 11% overreact to sirens. But no one would claim that all these kids have a sensory disorder. Carter thinks SPD is too vaguely defined for prime time in the DSM. Instead, she favors adding it to a section at the back of the manual on disorders that warrant further study. Granting it such provisional status would open the door to more research funds. Then, if validated, SPD could have a shot at being included in the DSM VI--due out somewhere around 2025.
But parents of children who are struggling today are not inclined to wait 18 years, so they spring for therapy that has only anecdotal validation. Treatment is highly individualized, but much of it involves guiding the kids to do more of the things they don't do easily and respond less to the things they can't abide. Lizzie Cave works on noise sensitivity by listening to a calibrated series of audiotapes. Jacob Turner, 3, improves his tolerance for food textures by playing with gooey concoctions and allowing a therapist to put them ever nearer his mouth.
Families get instructions on how to adjust their children's "sensory diets" to help them function better at home and in school. Christopher Medema, 7, now puts a weighted blanket on his lap when he's doing seatwork at school. The steady pressure meets some of his need for tactile input and helps him focus. His family has learned to accommodate his craving for motion. "He likes doing math flash cards standing on his head," says his dad, Steven.
As for Matthew North? He still looks a little limp while dangling from gym equipment, and the blue eyes peering above a sprinkling of freckles gaze warily at people he doesn't know. But the boy who couldn't catch a beach ball last summer is now learning Tae Kwon Do and even soccer. "I saved a couple of goals," he admits, with a little prompting from Mom. That sounds an awful lot like recovery--from whatever it is that ails him.n
The original version of this article misidentified occupational therapist A. Jean Ayres as having been on the faculty of UCLA. In fact, Ayres taught and did her groundbreaking research on Sensory Processing Disorder at the University of Southern California (USC).
"The Next Attention Deficit Disorder?" by Claudia Wallis November 2007
With a teacher for a mom and a physician's assistant for a dad, Matthew North had two experts on the case from birth, but his problems baffled them both. "Everything was hard for Matthew," says Theresa North, of Highland Ranch, Colo. He didn't speak until he was 3. In school, he'd hide under a desk to escape noise and activity. He couldn't coordinate his limbs well enough to catch a big beach ball.
Matthew, now 10, was evaluated for autism and attention deficit hyper-activity disorder, but the labels didn't fit. "We filled out those ADHD questionnaires a million times, and he always came out negative," Theresa recalls. "When we found this place, I cried. It was the first time someone said they could help."
This place is the Sensory Therapies and Research [STAR] Center, just south of Denver, which treats about 50 children a week for a curious mix of problems. Some can't seem to get their motors in gear: they have low muscle tone and a tendency to respond only minimally to conversation and invitations to play. Others are revved too high: they annoy other children by crashing into them or hugging too hard. Many can't handle common noises or the feel of clothing on their skin. A number just seem clumsy. Adults can remember kids like these from their own childhood. They were the ones called losers, loners, klutzes and troublemakers. At STAR Center they wear a more benign label: children with sensory processing disorder (SPD).
Never heard of it? You're in good company. Neither have many pediatricians, neurologists, psychologists and teachers. But in the parallel universe of occupational therapy, which focuses on the more primal "occupations" of life--dressing, eating, working, playing--SPD is commonly treated. Last month, at a conference on SPD in New York City, 350 occupational therapists (OTs) and others gathered to hear about the latest research and therapies.
OTs have been treating SPD, also known as sensory integration dysfunction, since 1972, when A. Jean Ayres, a University of Southern California (USC) psychologist and occupational therapist, published the first book on the condition. As defined by Ayres and others, SPD is a mixed bag of syndromes, but all involve difficulty handling information that comes in through the senses--not merely hearing, sight, smell, taste and touch, but also the proprioceptive and vestibular senses, which tell us where our arms and legs are in relation to the rest of us and how our body is oriented toward gravity. Some kids treated for SPD can't maintain an upright position at a desk; some are so sensitive to touch that they shriek when their fingernails are trimmed or if they get oatmeal on their face. Sounds and smells can be overwhelming. When lawn mowers roar outside the home of Lizzie Cave, 4, a STAR child, she's been known to vomit.
Families that find their way to the STAR Center and other groups that treat SPD typically have traveled a long road to get there. Their common refrains: My doctor doesn't believe in SPD; teachers can't handle it; insurance won't pay for therapy. There's good reason for that. SPD is not listed in medical texts or in the Diagnostic Statistical Manual (DSM), the bible of psychiatric disorders. Doctors acknowledge sensory issues as a common feature of autism and a frequent feature of ADHD but not as a stand-alone disorder. Lucy Jane Miller, a former protégé of Ayres and head of the STAR Center, is spearheading a campaign to change that. She has organized a national effort to have SPD added to the next edition of the DSM, the fifth, due out in 2012. Earning a spot in the DSM V would make it easier for researchers to win grants, kids to get accommodations at school and families to be reimbursed for a course of treatment, which, at the STAR Center, often costs $4,000.
To receive recognition, advocates must provide persuasive evidence that "this is not just part of autism or ADHD, that it's a better definition of what these kids are experiencing," says Dr. Darrel Regier, director of research for the American Psychiatric Association and vice chair of the DSM V task force. What's needed, says Regier, is a body of peer-reviewed studies that defines "a core set of symptoms, a typical clinical course" and, if possible, good treatment data.
SPD research so far is provocative but limited. "It's hard to get grants for a disorder that doesn't exist," laments Miller, whose recent book, Sensational Kids, offers a guide to both research and treatment. Many studies are flawed by vague criteria for identifying the condition, samples that include kids with other disorders, and an utter lack of standardized treatment.
But Miller and others have been slowly building a research base. Studies at her SPD Research Institute, adjacent to the STAR clinic, have identified neurological differences between children with sensory-processing problems and typical kids. In one set of experiments, electrodes are attached to children's hands to measure nervous-system activity in response to a series of stimuli that include a siren, a powerful wintergreen scent, the brush of a feather against the cheek--each repeated eight times. A healthy child will show a strong electrodermal response--basically a measure of sweating or stress--to the first exposure but will quickly habituate, showing little response to the final repetitions. Kids with one brand of SPD jump through the roof with every repetition. "It's as if they are stuck in fight-or-flight mode," says researcher Sarah Schoen.
Other experiments at the University of Colorado have found that kids with sensory problems have atypical brain activity when simultaneously exposed to sound and touch. And a 2006 study of twins at the University of Wisconsin gave evidence that hypersensitivity to noise and touch have a strong genetic component.
No one can say with certainty how many kids are severely affected by sensory problems, though preliminary work by Miller suggests it may be 1 in 20. A critical question is where to draw the line between what's normal and what's pathological (see sidebar). Studies conducted by Alice Carter, professor of psychology at the University of Massachusetts, Boston, suggest that 40% of children ages 7 to 10 are so sensitive to touch that tags in clothing annoy them, and 11% overreact to sirens. But no one would claim that all these kids have a sensory disorder. Carter thinks SPD is too vaguely defined for prime time in the DSM. Instead, she favors adding it to a section at the back of the manual on disorders that warrant further study. Granting it such provisional status would open the door to more research funds. Then, if validated, SPD could have a shot at being included in the DSM VI--due out somewhere around 2025.
But parents of children who are struggling today are not inclined to wait 18 years, so they spring for therapy that has only anecdotal validation. Treatment is highly individualized, but much of it involves guiding the kids to do more of the things they don't do easily and respond less to the things they can't abide. Lizzie Cave works on noise sensitivity by listening to a calibrated series of audiotapes. Jacob Turner, 3, improves his tolerance for food textures by playing with gooey concoctions and allowing a therapist to put them ever nearer his mouth.
Families get instructions on how to adjust their children's "sensory diets" to help them function better at home and in school. Christopher Medema, 7, now puts a weighted blanket on his lap when he's doing seatwork at school. The steady pressure meets some of his need for tactile input and helps him focus. His family has learned to accommodate his craving for motion. "He likes doing math flash cards standing on his head," says his dad, Steven.
As for Matthew North? He still looks a little limp while dangling from gym equipment, and the blue eyes peering above a sprinkling of freckles gaze warily at people he doesn't know. But the boy who couldn't catch a beach ball last summer is now learning Tae Kwon Do and even soccer. "I saved a couple of goals," he admits, with a little prompting from Mom. That sounds an awful lot like recovery--from whatever it is that ails him.n
The original version of this article misidentified occupational therapist A. Jean Ayres as having been on the faculty of UCLA. In fact, Ayres taught and did her groundbreaking research on Sensory Processing Disorder at the University of Southern California (USC).
Saturday, October 10, 2009
Sensory Processing Disorder Conference
Yesterday a friend of mine and I went to an amazing conference on SPD… it was overwhelming. I can speak for myself when I said that while I left with a lot of additional knowledge in what I can do to help my precious sensational child, I also left with a very heavy/hurting heart and in fact my head was hurting too.
I learned amazing things that I can do to help Shelby to not exhibit the symptoms that get her labeled as “naughty” or “hyper” , but I also received a lot of amazing information that I am going to beat her teacher over with the head with and down her throat it if I have to, to get the teacher to listen. You see Shelby has come home several of the days saying “ Teacher XXX hates me”, and Chad and I have been trying to tell her that isn’t the case and that her teacher loves her…well that is hard to continue to say to her when Avery (who is in the same class thank God), says “No really mommy…Teacher XXX doesn’t like her”.
So I will be calling this teacher and setting up a meeting to give her this information, and to also tell her what I expect from the situations because frankly… preschool is WAY too early for this bull crud!! I will fight for this child as well as for the rest of my children (Hell I’ll fight for YOUR babies too if need be)…and apparently giving the teacher the information hasn’t been going well since apparently nothing has changed…except Shelby NOT wanting to go to school, and having to be made feel like crap in a world that already thinks she is a brat.
I also want to put a little shout out to Dr. John Taylor who is the physician who gave the conference…he is AMAZING… absolutely amazing. He specializing in SPD/ADD/ADHD/Autism Spectrum, and frankly it was the best $$ I have ever spent… HANDS DOWN AMAZING… you can find more on Dr Taylor and his work at his personal web site www.ADD-Plus.com . Again he was AMAZING!!! Another awesome thing that I learned at this conference is that hopefully when the 2012 DSM comes out SPD will be included so it will be an official psychiatric condition and rather a 'list of symptoms'.... and then I will be able to tell not only the schools system to take a big ole big of my rear end and help my baby... but others who struggle even worse with things like insurance etc will also be able to do the same thing...
Friday, June 12, 2009
This is the face.....
This is the face of SPD… Sensory Processing Disorder. If you saw her on a good day you would never know there was anything ‘wrong’ (and I use that term loosely because frankly… I think she is perfect). But if you saw her on an off day… you would write her off as the biggest brat and me (or my husband) as the worst parent on the face of the earth.I am sad. I am angry. I am ungrateful. I am confused. I mourn. But mostly I am frustrated.
My child has sensory processing disorder. This disorder is not as uncommon as people think (it just seems that no one famous has told us their child suffers from it so therefore it doesn’t exist). There are several tools and therapies that can help a child who suffers from this life altering disorder. The therapies and tools that can help with this disorder are expensive, hard to find and mostly NOT COVERED BY INSURANCE.
I watch my daughter struggle daily because of things that other children pay no attention to. For example…today she was at the park she was able to climb the bars up to the top of the slide…but once she got to the top, she realized that the ‘floor’ that she was standing on was a grate (covered in rubber and posed no real threat to her safety). This grate cause my child who just moments later had the biggest smile radiating the greatest sense of accomplishment --- 6 months ago she would have never been able to pull her body weight up with her arms to climb the rungs of the ladder), now had her paralyzed with fear…because she now knew she wasn’t (in her mind) on solid ground.
She loves to swing high, run fast and spin faster. She wakes up rip raring to go and doesn’t stop until she literally drops exhausted from the way her ‘engine’ has been driving her all day long. Her bones are light and thankfully flexible, her tendons are so loose she sprains her ankles and wrists several times a day – but thankfully does not get injured--, she goes so fast that her little body can just not keep up with her, she falls daily—several times in fact, she CRAVES touch and cannot get close enough but needs to be in control of just who is touching her. She is fearless but is so scared.
Today I crumbled… today I cried… and I mean sobbed in the hospital hallway. You see Shelby had recently had to be ‘re-evaluated’ because SPD isn’t a ‘recognized diagnosis’ with our health insurance or our public school system—side note, if Shelby were to be labeled with her mild CP (yes Shelby does in fact have mild CP caused from a brain bleed prior to birth) or as autistic (which she is not... most children who are autistic do have SPD, but a child/person can have SPD without being on the Autism Spectrum) then our insurance or school system would not be able make us jump through hoops or do the damn dance that we have to, but because we have her ‘only’ labeled as SPD she is screwed—she has to undergo more than average amount of testing to make sure that she still ‘needs’ therapy. Well today I got the call from our AWESOME occupational therapist that our insurance had finally finished evaluating – it took them 3 weeks mind you--- 3 weeks she was not ‘allowed’ to go to therapy session—so that we could come in for therapy today. When I arrived I was given my copy of the report that the OT had sent to our insurance. It was because of this report that I was sobbing in the hallway of the hospital. If you read this report you not knowing my child you would think …. I don’t even know what you would think. It was just so much worse on paper than in real life. And it wasn’t even what was written… it was the fact that a lot of it is true. I won’t go into the specifics because that is obviously her story and since she is 3 she may not want it shared with the entire world… but it made me sad.
She is so much more than ‘just’ an SPD kid. Shelby has been a fighter from the very beginning of her life—since conception really and will continue to be...with Chad and I at her side. She (we are fairly certain) is the polar body that should have not fertilized. – Ok.. prior to fertilization my egg split in what is considered a polar body twinning, well in 99.5% of cases the polar body is supposed to die off… but in our case we were lucky enough to ‘get’ a Shelby out of the deal—she is the twin that wasn’t growing for awhile, she is the twin who’s placenta keep partially detaching, she is the twin who thought it would be fun to have decreases in heart rates and not respond AT ALL during non-stress tests during our pregnancy. She is the baby who thought it would be fun to not do anything that was expected of her…ever. She is our Shelby… she is a perfect and unique gift from God and she is ours. We are blessed beyond words to have her (and the rest of our children as well) in our lives.
As for my anger… I am angry that others think they can judge her because of an off day. I am angry because I and Chad have known since the very beginning that ‘something’ just wasn’t the way it was with our other children and were ignored--- time and time again. It wasn’t until the amazing Dr. Goldstein entered our lives did things start to click and make sense. Dr. Goldstein has been a godsend for Shelby and for us.
I have made it my mission to make myself SHELBY’S VOICE… and the voice of every other parent and child who is suffering from Sensory Processing Disorder. The treatment that my daughter, and other SPD children receive is NOT RIGHT … it is discrimination. It is my mission to make people aware of SPD and the children and families that it affects...it is my mission to make sure that MY CHILD, and ANY CHILD and FAMILY who is affected by SPD recieves the help they need.... I may not be famous... but I sure am LOUD :)
I AM A SENSATIONAL MOM OF A SENSATIONAL CHILD.... and I am happy that I am!
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