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!
"Motherhood brings as much joy as ever, but it still brings boredom, exhaustion, and sorrow too. Nothing else ever will make you as happy or as sad, as proud or as tired, for nothing is quite as hard as helping a person develop his own individuality especially while you struggle to keep your own." -- Marguerite Kelly and Elia Parsons
Showing posts with label Public awarness. Show all posts
Showing posts with label Public awarness. Show all posts
Saturday, February 20, 2010
Tuesday, November 17, 2009
Who Will Fight For Preemies???
"We need to fight-- because Babies shouldn't have to"
Today is National Prematurity Awareness Day and if you know ANYTHING about the Krumwiede family -- ours and extended-- prematurity is a cause that is VERY near and dear to our hearts... Did you know that every year over half a million babies will be born premature (meaning prior to 37 weeks gestation) in the United States, and in North Dakota alone EACH WEEK 20 babies will be born preterm, 3 of those being very preterm (which means prior to 32 weeks), 11 babies will be born low birth weight (less than 2500 grams) and 2 babies will be born very low birth weight (less than 1500 grams).
These are SCARY numbers...Being the mom of 4 preemies, and the auntie to 4 more (Kellen and Shea were born at 29 weeks 5 days, Hailee was born at 36 weeks, and Our Precious Ella* was born at 24 weeks gestation). I feel that sharing the mission of the March of Dimes is my way to give thanks for the miracles in my life, it is my way to give back...IT IS MY DUTY.
A very special THANK YOU to the March of Dimes for all that you do. It is because of the March of Dimes and the awesome work that they do that more and more children at being born healthy ** every day, and going home with their parents as every child should. It is because of the March of Dimes that polio has almost been irradicated, it is because of the March of Dimes that there is testing for metabolic diseases such as PKU in newborns, it is because of the March of Dimes that surfactant has come about, it is because of the March of Dimes that synagys vaccines are here to help preterm infants fight off the deadly disease of RSV. THANK YOU MARCH OF DIMES....THANK YOU!!!
** being born 'healthy' in the eyes of the March of Dimes does not mean the definition of 'perfect' as society has labeled it... Healthy means as close to term as possible...**
Sunday, October 11, 2009
Bill of Rights for Parents of Kids with Special Needs
I stole this from a friend who stole it from a friend who is the author but I felt the need to steal it as well because it NEEDS to be shared... Please read and pass along (with credit to the author of course)...
We, the parents, in order to form a more perfect union, establish justice, ensure tranquility (and sanity) and promote the general welfare of our families, do ordain and establish this Bill of Rights.
* We have the right to expect our kids to be seen for who they are as individuals, not as labels or diagnoses.
* We have a right to trust our instincts about our kids and realize that experts don't always know best.
* We have a right to ignore the remarks, questions and stares and not give explanations or excuses for why our children are the way they are.
* We have a right to choose alternative therapies for our kids.
* We have a right to roll our eyes straight out of our heads when we encounter certain mothers who brag nonstop that their kids are the smartest students/best athletes ever.
* We have a right to wonder “What if…” every so often.
* We have a right to play aimlessly with our children. Not for therapeutic or educational purposes—just for fun.
* We have a right to blast Bruce Springsteen/Tom Petty/Any Rocker, down a glass of Pinot Grigio, get a pedicure, go out with the girls or do all of the aforementioned at once if that's what it takes to avoid burnout.
* We have a right to react to people’s ignorance in whatever way we feel necessary.
* We have a right to not always have our child be the poster child for his/her disability and some days be just a child.
* We have a right to go through the grieving process and realize we may never quite be "over it."
* We have the right to give our kids chores. Even better if they can learn to make breakfast in bed for us.
* We have a right to stretch the truth when we fail to do the exercises the therapist asked us to do this week because we were too darn tired or overwhelmed.
* We have a right to have yet more Pinot Grigio.
* We have a right to fire any doctor or therapist who's negative, unsupportive or who generally says suck-y things.
* We have a right to tell family and friends that everything may not be OK—at least not how they mean it, anyway.
* We have a right to hope for an empty playground so we don’t have to look into another child’s eyes and answer the question, “What’s wrong with him?”
* We have a right to bawl on the way back from the playground, the birthday party, the mall or anyplace where our children’s challenges become glaringly obvious in the face of all the other kids doing their typical-development things.
* We have the right to give our children consequences for their behavior. They may be “special” but they can still be a royal pain in the ass.
* We have a right to take a break from Googling therapies, procedures, medicine and treatments for our kids to research upcoming concerts, exotic teas or anything not related to our children’s disabilities.
* We have a right to talk about how great our kids are when people don’t get it.
* We have the right to not always behave as inspirational icons who never complain or gripe about the sometimes awful realities of raising a child with special needs.
* We have a right to expect quality services for our children not just when they’re infants, preschoolers and elementary school age, but when they’re in older grades and adults, too.
* We have a right to adequate funding for those services and to not have to kick, scream or endure a wait for them.
* We have a right to get tired of people saying, as they give that sympathy stare, "I don't know how you do it."
* We have a right to wish that sometimes things could be easier.
* We have a right to cheer like crazy anytime our children amaze us—or weep like lunatics.
* We have a right to push, push and push some more to make sure our children are treated fairly by the world.
We, the parents, in order to form a more perfect union, establish justice, ensure tranquility (and sanity) and promote the general welfare of our families, do ordain and establish this Bill of Rights.
* We have the right to expect our kids to be seen for who they are as individuals, not as labels or diagnoses.
* We have a right to trust our instincts about our kids and realize that experts don't always know best.
* We have a right to ignore the remarks, questions and stares and not give explanations or excuses for why our children are the way they are.
* We have a right to choose alternative therapies for our kids.
* We have a right to roll our eyes straight out of our heads when we encounter certain mothers who brag nonstop that their kids are the smartest students/best athletes ever.
* We have a right to wonder “What if…” every so often.
* We have a right to play aimlessly with our children. Not for therapeutic or educational purposes—just for fun.
* We have a right to blast Bruce Springsteen/Tom Petty/Any Rocker, down a glass of Pinot Grigio, get a pedicure, go out with the girls or do all of the aforementioned at once if that's what it takes to avoid burnout.
* We have a right to react to people’s ignorance in whatever way we feel necessary.
* We have a right to not always have our child be the poster child for his/her disability and some days be just a child.
* We have a right to go through the grieving process and realize we may never quite be "over it."
* We have the right to give our kids chores. Even better if they can learn to make breakfast in bed for us.
* We have a right to stretch the truth when we fail to do the exercises the therapist asked us to do this week because we were too darn tired or overwhelmed.
* We have a right to have yet more Pinot Grigio.
* We have a right to fire any doctor or therapist who's negative, unsupportive or who generally says suck-y things.
* We have a right to tell family and friends that everything may not be OK—at least not how they mean it, anyway.
* We have a right to hope for an empty playground so we don’t have to look into another child’s eyes and answer the question, “What’s wrong with him?”
* We have a right to bawl on the way back from the playground, the birthday party, the mall or anyplace where our children’s challenges become glaringly obvious in the face of all the other kids doing their typical-development things.
* We have the right to give our children consequences for their behavior. They may be “special” but they can still be a royal pain in the ass.
* We have a right to take a break from Googling therapies, procedures, medicine and treatments for our kids to research upcoming concerts, exotic teas or anything not related to our children’s disabilities.
* We have a right to talk about how great our kids are when people don’t get it.
* We have the right to not always behave as inspirational icons who never complain or gripe about the sometimes awful realities of raising a child with special needs.
* We have a right to expect quality services for our children not just when they’re infants, preschoolers and elementary school age, but when they’re in older grades and adults, too.
* We have a right to adequate funding for those services and to not have to kick, scream or endure a wait for them.
* We have a right to get tired of people saying, as they give that sympathy stare, "I don't know how you do it."
* We have a right to wish that sometimes things could be easier.
* We have a right to cheer like crazy anytime our children amaze us—or weep like lunatics.
* We have a right to push, push and push some more to make sure our children are treated fairly by the world.
Monday, September 28, 2009
Fall TV
With fall also comes new shows and series on TV, normally I don't get to addicted to any of these shows because quite frankly I don't like to 'waste' the time I have after the kids go to bed to watch the tv shows that I have dvrd... but there are always some exceptions like "Drop Dead Diva" and "Army Wives".
The other night while I was flipping through our tv stations (yes, we have hundreds of tv channels and I was still channel surfing) I happened upon a new program on Wetv. This network would hands down be called a 'chick channel' by my husband, but there was this marathon of these new series on and I couldn't pull myself away from it. It is called "Adoption Diaries". I have been watching different adoption and birth shows since far before I was a mom, and the one that I most recently watched was called "Adoption Stories". But Adoption Diaries are different than the other shows that I have watched in the past because this show shows/follows the process of an Open Adoption. I think it is amazing.
We know several friends/family members who have gone through (or are going through) different types of adoption and it was amazing to see the way that one more area of this process works. I found myself crying along with both the adoptive and birth families as I watched these episodes because frankly... you can SEE their emotion... Hands down and amazing new program... MUST WATCH TV if you ask me :)
The other night while I was flipping through our tv stations (yes, we have hundreds of tv channels and I was still channel surfing) I happened upon a new program on Wetv. This network would hands down be called a 'chick channel' by my husband, but there was this marathon of these new series on and I couldn't pull myself away from it. It is called "Adoption Diaries". I have been watching different adoption and birth shows since far before I was a mom, and the one that I most recently watched was called "Adoption Stories". But Adoption Diaries are different than the other shows that I have watched in the past because this show shows/follows the process of an Open Adoption. I think it is amazing.
We know several friends/family members who have gone through (or are going through) different types of adoption and it was amazing to see the way that one more area of this process works. I found myself crying along with both the adoptive and birth families as I watched these episodes because frankly... you can SEE their emotion... Hands down and amazing new program... MUST WATCH TV if you ask me :)
Thursday, September 24, 2009
Calling all my buddies for a movie night...
We totally need to go see this movie... And I have to ask my 'girlfriends' to go because after the last pick of movie I made Chad go to he has been given a pass on ANY movie I pick until the new Harry Potter comes out... ;)
Wednesday, September 23, 2009
Moving...
This is a video that was presented at the Autism Speaks Convention a few days ago...
Many people ask when we tell them about Shelby and her SPD if she is Autistic... she is not, but that doesn't mean that we don't relate to others in the autism community. We have banned with the Autism community because they (like us) struggle for people to understand their child and their 'specialness'. Many people who are on the autism spectrum have sensory issues, and in fact having sensory issues diagnosed is often one of the first steps in getting a diagnosis of a spectrum disorder.... I am certainly not an expect nor will I ever claim to be... but I am a MOTHER of a SENSATIONAL child and I will be her advocate and the advocate of any other child who like her, struggles with life because she doesn't fit in YOUR box...
Labels:
Autism Awareness,
Kristin,
Public awarness,
Shelby,
SPD
Wednesday, April 22, 2009
LET OUR VOICES BE HEARD!!!

Here is the email that I sent my State Representative today... I understand that many of us don't see eye to eye on the 'issue' of sexual orientation and gender identity, but even those who disagree with me (and many others) KNOW that NO ONE should be discrimiated against.... So if you are in Bismarck tomorrow.. PLEASE feel free to join me and my little 'lefty' children at the capital....
Hello!
My name is Kristin Wentz-Krumwiede and I am one of your constituents, which frankly I have not be very proud to admit lately. I can not believe that you voted against HUMAN RIGHTS when it comes to the GLBT Community. Some people have being claiming their ‘religious’ believes, others have been claiming ‘moral’ believes… but excuse me but you were not elected to push your own personal beliefs…. You were supposed to speak for ME and the other citizens of your district.
I am a strict Democrat, and have been since before I was even old enough to vote. In fact my friend Elizabeth and I (you may know her father Senator Robert Stenehjem) used to discuss politics in 8th grade government class… so even then I had my own views. You actually spoke to me during this past election race… you told me you were different than the ‘rest’ you told me that you would fight for me and the other citizens of North Dakota, so for the first time EVER in the 10 years that I have been legal to vote, I crossed party lines and voted for you. You claimed that you would fight for the rights and liberties of the people of Burleigh County, District 35… do you realize that when you voted NO on Senate Bill 2278 that you voted AGAINST the same people that you swore that you would protect and fight for?
Even if you do not agree with the GLBT community, you have got to realize that ANY kind of discrimination is wrong… just think less than 100 years ago… YOU COULDN’T EVEN VOTE… and here you are now making change with your seat in the North Dakota House of Representatives. Good thing someone had the sense to vote FOR A MINORITY CASE… WOMEN!!! I can only hope and pray (yes even Democrats believe in God and have faith) that some day people who really have the RIGHTS of their constituents in their mind and work in THEIR best interest will one day be elected to the North Dakota Government.
So tomorrow when you hear the many voices of the North Dakota people telling you THAT ALL PEOPLE IN NORTH DAKOTA should not be discriminated against KNOW that my voice will FINALLY be heard…
Thank you for your time-
Kristin Wentz-Krumwiede
My name is Kristin Wentz-Krumwiede and I am one of your constituents, which frankly I have not be very proud to admit lately. I can not believe that you voted against HUMAN RIGHTS when it comes to the GLBT Community. Some people have being claiming their ‘religious’ believes, others have been claiming ‘moral’ believes… but excuse me but you were not elected to push your own personal beliefs…. You were supposed to speak for ME and the other citizens of your district.
I am a strict Democrat, and have been since before I was even old enough to vote. In fact my friend Elizabeth and I (you may know her father Senator Robert Stenehjem) used to discuss politics in 8th grade government class… so even then I had my own views. You actually spoke to me during this past election race… you told me you were different than the ‘rest’ you told me that you would fight for me and the other citizens of North Dakota, so for the first time EVER in the 10 years that I have been legal to vote, I crossed party lines and voted for you. You claimed that you would fight for the rights and liberties of the people of Burleigh County, District 35… do you realize that when you voted NO on Senate Bill 2278 that you voted AGAINST the same people that you swore that you would protect and fight for?
Even if you do not agree with the GLBT community, you have got to realize that ANY kind of discrimination is wrong… just think less than 100 years ago… YOU COULDN’T EVEN VOTE… and here you are now making change with your seat in the North Dakota House of Representatives. Good thing someone had the sense to vote FOR A MINORITY CASE… WOMEN!!! I can only hope and pray (yes even Democrats believe in God and have faith) that some day people who really have the RIGHTS of their constituents in their mind and work in THEIR best interest will one day be elected to the North Dakota Government.
So tomorrow when you hear the many voices of the North Dakota people telling you THAT ALL PEOPLE IN NORTH DAKOTA should not be discriminated against KNOW that my voice will FINALLY be heard…
Thank you for your time-
Kristin Wentz-Krumwiede
Tuesday, March 31, 2009
A Tale of Two Mothers
This story was posted about on a blog that I follow and I want for others to understand what it is like...while Shelby is not autistic...she does have the sensory processing issues that can lead to the same looks, stares and NASTY comments when we are out in public... so please... take the time to read a tale of two mothers...
A Tale of Two Mothers
By Lisa Belkin
Mary P. Jones is the mother of two children, one of whom has been diagnosed with autism. She writes about helping her boy navigate through his challenges on her blog, A Room of Mama’s Own, and she does so anonymously (Mary Jones is her pseudonym) to protect her son (and the rest of her family, as you will see if you visit her blog.) Her goal is to shield the boy from prying eyes, not subject him to them. Because, as she writes in today’s guest blog, Mary knows a lot more than she would like about the stares of strangers.
A TALE OF TWO MOTHERSBy MARY P. JONES
I.
A mother and her son are in line at a grocery store. They boy looks like he’s about nine or ten. The mother looks a little tense as the boy starts to fidget in line. At this age he really should be able to stand still. And watch where he’s going. He almost bumped the person behind him. His mother does nothing.
“When are we going?” he asks.
“In about two minutes. We’re almost done, buddy,” she says.
“No, not about. Zero minutes! I want to go now. Right now! Right! Now!” he says and stomps his foot.
Again, his mother does nothing to make him stop his rude behavior.
Fortunately, the cashier has finished ringing up the groceries and now the boy starts hopping up and down in place as the mother reaches into her purse for her credit card. He practically snatches the card from her and then after he swipes it, he starts shouting at her, “No! No! You do it my way!” She leans down and whispers something to him and he stops yelling, but he still hops up and down again, glaring at her and pulling on her and making those grunting noises rude teenagers do when they’re disgusted with you. No doubt she’s told him she’ll give him the candy she bought if he keeps quiet: rewarding and reinforcing his unacceptable behavior as bad parents do.
The cashier hands her the receipt and says, “Thank you, Mrs. Jones,” and the boy screams at the cashier as they leave, “No! You’re terrible!” The mother leaves without a word as the next customer in line rolls her eyes sympathetically at the cashier.
II.
Today, I’m going to take my son Austen to the grocery store with me. It’s school break, and we need milk, the only thing Austen drinks.
Austen is autistic, which can make these trips hard for him. As a result, I schedule the bulk of my grocery shopping for times when he is in school or being cared for by someone else. However, sometimes I plan short trips like this one to help him get used to grocery stores (a skill he’ll need if he is going to live independently) or, like today, because we need some essential item at a time when I have no childcare options for him. When he does come along I make every effort to keep the visits to what we can both handle, so that they remain a positive experience for him.
To prepare for the trip, I’ve made sure that he is well fed, and I’ve arranged for his sister to play at her friend’s house so that I can focus on him. Since he thrives on routine and predictability, on sameness and scripts, I’ve reviewed what is going to happen when we’re in the store, so he knows what to expect. I’m also keeping the visit short; we’re going to get only what we need and then leave.
As part of his autism, Austen has sensory integration issues, which means that the way that his brain processes the information from his senses can turn a whisper into a scream or a tickle into a burn. Because of this, so much that goes unnoticed by others on these outings is painful to him: the store’s softly flickering fluorescent lights can look like a strobe and the incessant piped in music can sound like a rock concert, the aisles can seem breathlessly crowded with people, and the sight and smell of all these different foods can be nauseating; his own diet is self-limited to just a handful of items.
In spite of this, he does really well as we walk through the store. He stays close to me and doesn’t run off. He even talks about some of the items he sees on the shelves and points out some candy that he knows his sister likes, so we add it to the cart to bring home to her as a treat. He wouldn’t eat the candy himself even you bribed him with an XBox, so it’s wonderful that he thought of her. In fact, there are some who posit that autistics have no “theory of mind” at all — that they are incapable of realizing that others think differently. For Austen, it seems to be difficult, but not impossible, to see things from someone else’s point of view, and I celebrate it when he does.
As we pass through the produce section on our way out, a clerk says ‘hi’ and asks a question about the cartoon character on Austen’s t-shirt; they have a brief, polite conversation, although Austen has to pause a bit to gather his thoughts between sentences. At age two, Austen was not speaking at all and doctors first began to tell us that it was possible he was autistic. It took intensive speech therapy in his preschool years and the work of several loving and dedicated special education teachers to get him to the point where he can have this conversation today. Austen is tall for his age and the clerk is surprised to learn he’s only seven.
He’s handling this whole trip really well. All the work we’ve been doing to help him get comfortable is paying off. “You’re doing such an awesome job of helping me today, buddy,” I say.
All we have left to do is pay, but I get tense when I see there’s just one register open and the cashier is engaged in a complicated transaction ahead of us. We do the best we can, but even after a short, positive visit, waiting in line is hard. I think (hope) we can make it through the line without a meltdown. If we leave now, we’ll have to come back again later to get what we came for and the second trip is unlikely to go this well. After a little while, Austen starts circling me, which is what he does when he’s tired and anxious. He’s not hurting anyone by doing it, and he’s keeping himself calm. So, I breathe and hope the line moves quickly, since I can tell he’s used up almost all of his resources to make it this far. If we were finishing up and walking to the car now, as I had expected, the trip would have been perfect for everyone. I try to remind myself that sometimes, in spite of all my best planning, life happens.
At last he rolls his head back and sighs, “When are we going?”
“In about two minutes. We’re almost done, buddy,” I say. Oops, I’m tired and anxious too now, and I slip. This is the wrong time to say “about.” That’s a trigger word. Austen craves precision. We can work on estimates and inexactness like this at home, but the grocery store is the wrong place for it: just as running across a busy freeway would be the wrong time to stop and work on tying your shoe.
He also — as is the case in so much of the obsessive compulsive behavior that is common with autism — reacts to anxiety by becoming even more rigid and insistent on rules and routine in order to quell his rising panic. The more chaotic and unstable he feels his world becoming, the more he clings to the solidity and familiarity of the rules he’s created to soothe himself. That means the very public situations in which he’s expected to be most flexible are the very situations in which he most desperately wants the world to conform to his rules. Predictably, he protests my vagueness.
“No, not ‘about.’ Zero minutes! I want to go now. Right now! Right! Now!” he says and stomps his foot. Damn, he’s really had more than he can handle already. I didn’t think we’d have to wait so long in line. He’s been working so hard to make it this far, and I know he’ll feel better once he’s back in the quiet, familiar car away from the people and the lights and a whole store full of nauseating, offensive foods.
Fortunately, we’re at the front of the line by now and the cashier rings up our groceries quickly. Obsessive interests are another hallmark of autism, and a longstanding passion for numbers is one of Austen’s. He loves to work the ATM/credit machine, so his participation in this process is a way to end trips on a positive note. After some practice, we’ve gotten pretty smooth with it. He likes to push in the PIN numbers, and has finally reached a point where he no longer feels compelled to say my PIN out loud as he types it. We only run into problems when we have to use the card as credit, because he doesn’t like to see my signature. It’s incomprehensible and extremely upsetting to him that the bank wants me to scribble instead of printing my name in block letters like at school. Everything goes well at first, he takes the card eagerly, swipes it just right and gets ready to enter the PIN, but the cashier makes an error and we have to reprocess the transaction as credit.
Austen, overwhelmed by the wait, anxious that things aren’t going as planned and distraught at the thought that I’m going to have to sign rather than punch in a PIN, starts shouting, “No! No! You do it my way!” I lean down and remind him that when he gets upset in these situations, he’s supposed to signal me and let out his anxiety by squeezing my hand really hard instead of yelling. So, he hops up and down again, frowning and grunting slightly with the effort of squeezing my hand tightly.
At last, we’re almost finished. The cashier hands me the receipt and says, “Thank you, Mrs. Jones,” and I do my best to rush us out. Austen, exhausted and triggered by the formal use of my last name (“only teachers are called Mrs. and you’re not a teacher”) is practically in tears as we move toward the door. Unable to soothe himself with the hand squeezing any longer, he screams at the cashier as we walk away, “No! You’re terrible!” I smile weakly and shrug an apology from near the door.
All in all, it was a very successful trip, and once we’re clear of the store, I say, “I know that was really hard, but we’re all done now. You did great this time, buddy, even better than last time. High five!”
A Tale of Two Mothers
By Lisa Belkin
Mary P. Jones is the mother of two children, one of whom has been diagnosed with autism. She writes about helping her boy navigate through his challenges on her blog, A Room of Mama’s Own, and she does so anonymously (Mary Jones is her pseudonym) to protect her son (and the rest of her family, as you will see if you visit her blog.) Her goal is to shield the boy from prying eyes, not subject him to them. Because, as she writes in today’s guest blog, Mary knows a lot more than she would like about the stares of strangers.
A TALE OF TWO MOTHERSBy MARY P. JONES
I.
A mother and her son are in line at a grocery store. They boy looks like he’s about nine or ten. The mother looks a little tense as the boy starts to fidget in line. At this age he really should be able to stand still. And watch where he’s going. He almost bumped the person behind him. His mother does nothing.
“When are we going?” he asks.
“In about two minutes. We’re almost done, buddy,” she says.
“No, not about. Zero minutes! I want to go now. Right now! Right! Now!” he says and stomps his foot.
Again, his mother does nothing to make him stop his rude behavior.
Fortunately, the cashier has finished ringing up the groceries and now the boy starts hopping up and down in place as the mother reaches into her purse for her credit card. He practically snatches the card from her and then after he swipes it, he starts shouting at her, “No! No! You do it my way!” She leans down and whispers something to him and he stops yelling, but he still hops up and down again, glaring at her and pulling on her and making those grunting noises rude teenagers do when they’re disgusted with you. No doubt she’s told him she’ll give him the candy she bought if he keeps quiet: rewarding and reinforcing his unacceptable behavior as bad parents do.
The cashier hands her the receipt and says, “Thank you, Mrs. Jones,” and the boy screams at the cashier as they leave, “No! You’re terrible!” The mother leaves without a word as the next customer in line rolls her eyes sympathetically at the cashier.
II.
Today, I’m going to take my son Austen to the grocery store with me. It’s school break, and we need milk, the only thing Austen drinks.
Austen is autistic, which can make these trips hard for him. As a result, I schedule the bulk of my grocery shopping for times when he is in school or being cared for by someone else. However, sometimes I plan short trips like this one to help him get used to grocery stores (a skill he’ll need if he is going to live independently) or, like today, because we need some essential item at a time when I have no childcare options for him. When he does come along I make every effort to keep the visits to what we can both handle, so that they remain a positive experience for him.
To prepare for the trip, I’ve made sure that he is well fed, and I’ve arranged for his sister to play at her friend’s house so that I can focus on him. Since he thrives on routine and predictability, on sameness and scripts, I’ve reviewed what is going to happen when we’re in the store, so he knows what to expect. I’m also keeping the visit short; we’re going to get only what we need and then leave.
As part of his autism, Austen has sensory integration issues, which means that the way that his brain processes the information from his senses can turn a whisper into a scream or a tickle into a burn. Because of this, so much that goes unnoticed by others on these outings is painful to him: the store’s softly flickering fluorescent lights can look like a strobe and the incessant piped in music can sound like a rock concert, the aisles can seem breathlessly crowded with people, and the sight and smell of all these different foods can be nauseating; his own diet is self-limited to just a handful of items.
In spite of this, he does really well as we walk through the store. He stays close to me and doesn’t run off. He even talks about some of the items he sees on the shelves and points out some candy that he knows his sister likes, so we add it to the cart to bring home to her as a treat. He wouldn’t eat the candy himself even you bribed him with an XBox, so it’s wonderful that he thought of her. In fact, there are some who posit that autistics have no “theory of mind” at all — that they are incapable of realizing that others think differently. For Austen, it seems to be difficult, but not impossible, to see things from someone else’s point of view, and I celebrate it when he does.
As we pass through the produce section on our way out, a clerk says ‘hi’ and asks a question about the cartoon character on Austen’s t-shirt; they have a brief, polite conversation, although Austen has to pause a bit to gather his thoughts between sentences. At age two, Austen was not speaking at all and doctors first began to tell us that it was possible he was autistic. It took intensive speech therapy in his preschool years and the work of several loving and dedicated special education teachers to get him to the point where he can have this conversation today. Austen is tall for his age and the clerk is surprised to learn he’s only seven.
He’s handling this whole trip really well. All the work we’ve been doing to help him get comfortable is paying off. “You’re doing such an awesome job of helping me today, buddy,” I say.
All we have left to do is pay, but I get tense when I see there’s just one register open and the cashier is engaged in a complicated transaction ahead of us. We do the best we can, but even after a short, positive visit, waiting in line is hard. I think (hope) we can make it through the line without a meltdown. If we leave now, we’ll have to come back again later to get what we came for and the second trip is unlikely to go this well. After a little while, Austen starts circling me, which is what he does when he’s tired and anxious. He’s not hurting anyone by doing it, and he’s keeping himself calm. So, I breathe and hope the line moves quickly, since I can tell he’s used up almost all of his resources to make it this far. If we were finishing up and walking to the car now, as I had expected, the trip would have been perfect for everyone. I try to remind myself that sometimes, in spite of all my best planning, life happens.
At last he rolls his head back and sighs, “When are we going?”
“In about two minutes. We’re almost done, buddy,” I say. Oops, I’m tired and anxious too now, and I slip. This is the wrong time to say “about.” That’s a trigger word. Austen craves precision. We can work on estimates and inexactness like this at home, but the grocery store is the wrong place for it: just as running across a busy freeway would be the wrong time to stop and work on tying your shoe.
He also — as is the case in so much of the obsessive compulsive behavior that is common with autism — reacts to anxiety by becoming even more rigid and insistent on rules and routine in order to quell his rising panic. The more chaotic and unstable he feels his world becoming, the more he clings to the solidity and familiarity of the rules he’s created to soothe himself. That means the very public situations in which he’s expected to be most flexible are the very situations in which he most desperately wants the world to conform to his rules. Predictably, he protests my vagueness.
“No, not ‘about.’ Zero minutes! I want to go now. Right now! Right! Now!” he says and stomps his foot. Damn, he’s really had more than he can handle already. I didn’t think we’d have to wait so long in line. He’s been working so hard to make it this far, and I know he’ll feel better once he’s back in the quiet, familiar car away from the people and the lights and a whole store full of nauseating, offensive foods.
Fortunately, we’re at the front of the line by now and the cashier rings up our groceries quickly. Obsessive interests are another hallmark of autism, and a longstanding passion for numbers is one of Austen’s. He loves to work the ATM/credit machine, so his participation in this process is a way to end trips on a positive note. After some practice, we’ve gotten pretty smooth with it. He likes to push in the PIN numbers, and has finally reached a point where he no longer feels compelled to say my PIN out loud as he types it. We only run into problems when we have to use the card as credit, because he doesn’t like to see my signature. It’s incomprehensible and extremely upsetting to him that the bank wants me to scribble instead of printing my name in block letters like at school. Everything goes well at first, he takes the card eagerly, swipes it just right and gets ready to enter the PIN, but the cashier makes an error and we have to reprocess the transaction as credit.
Austen, overwhelmed by the wait, anxious that things aren’t going as planned and distraught at the thought that I’m going to have to sign rather than punch in a PIN, starts shouting, “No! No! You do it my way!” I lean down and remind him that when he gets upset in these situations, he’s supposed to signal me and let out his anxiety by squeezing my hand really hard instead of yelling. So, he hops up and down again, frowning and grunting slightly with the effort of squeezing my hand tightly.
At last, we’re almost finished. The cashier hands me the receipt and says, “Thank you, Mrs. Jones,” and I do my best to rush us out. Austen, exhausted and triggered by the formal use of my last name (“only teachers are called Mrs. and you’re not a teacher”) is practically in tears as we move toward the door. Unable to soothe himself with the hand squeezing any longer, he screams at the cashier as we walk away, “No! You’re terrible!” I smile weakly and shrug an apology from near the door.
All in all, it was a very successful trip, and once we’re clear of the store, I say, “I know that was really hard, but we’re all done now. You did great this time, buddy, even better than last time. High five!”
Saturday, February 28, 2009
Let's save some boobies....
The Breast Cancer site is having trouble getting enough people to click on their site daily to meet their quota of donating at least one free mammogram a day to an underprivileged woman. It takes less than a minute to go to their site and click on "donating a mammogram" for free (pink window in the middle). This doesn't cost you a thing. Their corporate sponsors/advertisers use the number of daily visits to donate mammogram in exchange for advertising. Here's the web site! Pass it along to people you know. http://www.thebreastcancersite.com/
Also, I have added a little tag on the side so that while this post may drop off the front page it will always be there to help us remember to save the boobies!
Tuesday, January 20, 2009
a thought provoking video
I have never made a secret of my 'pro-choice' stance on abortion, that being said I believe that there are MANY other options to people in the situation that abortion would need to be considered, and I am a HUGE advocate for those other options.
A friend posted this video message on her blog the other day and I felt that this is a message that I wanted to pass along.... enjoy
thankfully for the subject of 'this' video everything worked out....sadly that isn't normally the case.
A friend posted this video message on her blog the other day and I felt that this is a message that I wanted to pass along.... enjoy
thankfully for the subject of 'this' video everything worked out....sadly that isn't normally the case.
Thursday, January 15, 2009
(Starbucks) GO RED


Do something good every day in 2009. Every time you use your (STARBUCKS)RED Card to pay for purchases at participating Starbucks stores between 1/3/09 and 12/31/09, we’ll donate 5 cents to the Global Fund to help save lives in Africa. When you register your (STARBUCKS)RED Card, you also get Starbucks Card Rewards Find out more about the Global Fund at http://www.joinred.com/
YOU KNOW I BOUGHT ONE :)
Monday, January 12, 2009
Vomit and RSV....lucky me
As many may know, October - April is the time of the year that RSV is the worst....or maybe many of you do not know that but you certainly do if you are the parent of a child that was born prematurely. All of our children were born preterm...Delainey was 35 weeks gestation, Shelby and Avery were 34 weeks gestation, and Brody was 36 weeks gestation. Shelby and Avery had some NICU time (11 days), Brody was only in the NICU for observation following our c-section and thankfully Delainey needed no NICU time at all.
As the parents of preemies, our household has always been aware of RSV and even though we do all that we can to prevent it (because we have Delainey in preschool it would be VERY hard to go into lock-down as many preemie families do, I applaud all of you that are able to do that), it seems to hit us every year no matter what and this year Brody is the one that 'wins' the prize.... All three of the girls also have had a cold since Christmas but because they are over 2 it isn't as 'scarey' for them and it is just considered a cold.... Brody's prize in the game of Preemie Illness is breathing treatments every 3-4 hours and tylenol for the pain (his throat is extremely raw from the coughing) and also motrin for the fever. Pleae keep our little guy in your prayers.
Oh yea...and Shelby is throwing up AGAIN!!! Damn those enlarged tonsils combined with a nasty cough .... thankfully she has an ENT appointment on January 30th....here's hoping we can come up with a solution because frankly I am tired of vomit...in fact I am so sick of vomit I could puke... Although... I have to say that I am rather proud of the fact that my 3 year old knows to book it to the bathroom when she is going to puke... The things us moms get proud of huh?? :) I am also thankful that the only part of my entire home that has carpet is the living room and even that is easy to clean :)
Hopefully the germs have skipped all your homes!!! Here are healthy thoughts to you all
As the parents of preemies, our household has always been aware of RSV and even though we do all that we can to prevent it (because we have Delainey in preschool it would be VERY hard to go into lock-down as many preemie families do, I applaud all of you that are able to do that), it seems to hit us every year no matter what and this year Brody is the one that 'wins' the prize.... All three of the girls also have had a cold since Christmas but because they are over 2 it isn't as 'scarey' for them and it is just considered a cold.... Brody's prize in the game of Preemie Illness is breathing treatments every 3-4 hours and tylenol for the pain (his throat is extremely raw from the coughing) and also motrin for the fever. Pleae keep our little guy in your prayers.
Oh yea...and Shelby is throwing up AGAIN!!! Damn those enlarged tonsils combined with a nasty cough .... thankfully she has an ENT appointment on January 30th....here's hoping we can come up with a solution because frankly I am tired of vomit...in fact I am so sick of vomit I could puke... Although... I have to say that I am rather proud of the fact that my 3 year old knows to book it to the bathroom when she is going to puke... The things us moms get proud of huh?? :) I am also thankful that the only part of my entire home that has carpet is the living room and even that is easy to clean :)
Hopefully the germs have skipped all your homes!!! Here are healthy thoughts to you all
Monday, January 5, 2009
A picture is worth a thousand words....
Sunday, December 14, 2008
Worldwide Candle Lighting

Today is a day of rememberance... today is a day for families who have lost a child to be able to mourn properly without the stigma of having to 'act' like everything is fine and that life is other peoples definition of 'normal'.
For families who have lost a child, their lives will NEVER be 'normal' again. They have to learn to 'deal' with their new lives without their child(ren).
So tonight at 7pm, please light a candle for all the families who have lost a child... and say a little prayer for them all.
So hug your children a little bit tighter tonight and always remember to say I LOVE YOU...
Saturday, October 4, 2008
I WANT THE TRUTH!!!!
It has been passed around the internet that Obama has said "My Muslim Faith"...well for those of you who want to know the TRUTH...here is that whole section of the interview. Remember people, you need to be the judge of what is the WHOLE TRUTH...even if YOU CAN'T HANDLE THE TRUTH!!!
Thursday, October 2, 2008
Don't vote....unless
CHECK OUT THIS VIDEO!!! IT IS COMPLETELY IMPORTANT!!!
http://perezhilton.com/tv/index.php?ptvid=7756ee5463c41
Tuesday, September 16, 2008
Why WOMEN need to vote...
THIS IS MOVING. MANY OF US DON'T KNOW THE WHOLE STORY...LET'S NOT FORGET...... WHY WOMEN SHOULD VOTEThis is the story of our Grandmothers and Great-grandmothers; they lived only 90 years ago.
Remember, it was not until 1920 that women were granted the right to go to the polls and vote
The women were innocent and defenseless, but they were jailed nonetheless for picketing the White House, carrying signs asking for the vote.And by the end of the night, they were barely alive. Forty prison guards wielding clubs and their warden's blessing went on a rampage against the 33 women wrongly convicted of 'obstructing sidewalk traffic'. They beat Lucy Burns, chained her hands to the cell bars above her head and left her hanging for the night, bleeding and gasping for air.
They hurled Dora Lewis into a dark cell, smashed her head against an iron bed and knocked her out cold. Her cellmate, Alice Cosu, thought Lewis was dead and suffered a heart attack. Additional affidavits describe the guards grabbing, dragging, beating, choking, slamming, pinching, twisting and kicking the women.Thus unfolded the 'Night of Terror' on Nov. 15, 1917, when the warden at the Occoquan Workhouse in Virginia ordered his guards to teach a lesson to the suffragists imprisoned there because they dared to picket Woodrow Wilson's White House for the right to vote. For weeks, the women's only water came from an open pail. Their food--all of it colorless slop--was infested with worms.
(Alice Paul)
When one of the leaders, Alice Paul, embarked on a hunger strike, they tied her to a chair, forced a tube down her throat and poured liquid into her until she vomited. She was tortured like this for weeks until word was smuggled out to the press. http://memory.loc.gov/ammem/collections/suffrage/nwp/prisoners.pdf
(Alice Paul)When one of the leaders, Alice Paul, embarked on a hunger strike, they tied her to a chair, forced a tube down her throat and poured liquid into her until she vomited. She was tortured like this for weeks until word was smuggled out to the press. http://memory.loc.gov/ammem/collections/suffrage/nwp/prisoners.pdf
So, refresh my memory. Some women won't vote this year because--why, xactly? We have carpool duties? We have to get to work? Our vote doesn't matter? It's raining?
Last week, I went to a sparsely attended screening of HBO's new movie 'Iron Jawed Angels'. It is a graphic depiction of the battle these women waged so that I could pull the curtain at the polling booth and have my say. I am ashamed to say I needed the reminder.
All these years later, voter registration is still my passion. But the actual act of voting had become less personal for me, more rote. Frankly, voting often felt more like an obligation than a privilege. Sometimes it was inconvenient.
My friend Wendy, who is my age and studied women's history, saw the HBO movie, too. When she stopped by my desk to talk about it, she looked angry. She was--with herself. 'One thought kept coming back to me as I watched that movie,' she said. 'What would those women think of the way I use, or don't use, my right to vote? All of us take it for granted now, not just younger women, but those of us who did seek to learn.' The right to vote, she said, had become valuable to her 'all over again.'
HBO released the movie on video and DVD . I wish all history, social studies and government teachers would include the movie in their curriculum I want it shown on Bunco night, too, and anywhere else women gather. I realize this isn't our usual idea of socializing, but we are not voting in the numbers that we should be, and I think a little shock therapy is in order.
It is jarring to watch Woodrow Wilson and his cronies try to persuade a psychiatrist to declare Alice Paul insane so that she could be permanently institutionalized. And it is inspiring to watch the doctor refuse. Alice Paul was strong, he said, and brave. That didn't make her crazy. The doctor admonished the men: 'Courage in women is often mistaken for insanity.'
Please, if you are so inclined, pass this on to all the women you know. We need to get out and vote and use this right that was fought so hard for by these very courageous women. Whether you vote democratic, republican or independent party, remember to vote.
HISTORY IS BEING MADE!!!
Friday, August 15, 2008
Thought provoking music video
A dear internet friend posted this video on her blog...it brought tears to my eyes and has really made me think... I hope it can do the same for you.**YOU WILL HAVE TO TURN OFF THE MUSIC AT THE BOTTOM OF MY PAGE TO BE ABLE TO HEAR THE SONG PROPERLY**
Thursday, August 14, 2008
USS New York
Here SHE is, the USS New York, made from the World Trade Center!


It was built with 24 tons of scrap steel from the World Trade Center.It is the fifth in a new class of warship - designed for missions that include special operations against terrorists. It will carry a crew of 360 sailors and 700 combat-ready Marines to be delivered ashore by helicopters and assault craft.Steel from the World Trade Center was melted down in a foundry in Amite , LA to cast the ship's bow section. When it was poured into the molds on Sept 9, 2003, 'those big rough steelworkers treated it with total reverence,' recalled Navy Capt. Kevin Wensing, who was there. 'It was a spiritual moment for everybody there.'Junior Chavers, foundry operations manager, said that when the trade center steel first arrived, he touched it with his hand and the 'hair on my neck stood up.' 'It had a big meaning to it for all of us,' he said. 'They knocked us down. They can't keep us down. We're going to be back.'The ship's motto? 'Never Forget'Please keep this going so everyone can see what we are made of in this country!
Wednesday, June 18, 2008
Another year on the board...
Today was the start of a new "board" year for Mom's Club. I am the AVP again. My job is that to run the fundraisers for our group as well as arrange speakers etc. I love the fundraising side of it. I often hear from people that I really should go into fundraising as a career, but personally when it isn't something I enjoy it can get to stressful and that just takes all the fun out of it. This year's fundraising ideas that I have are:
- Pizza Corner Pizzas (this is a DEFINATE MUST as it was a HUGE profit maker for us last year)
- Tastefully Simple...this one is up in the air because I am considering becoming a a consultant and would LOVE to do this for our group.
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