Monday, March 26, 2012

Acceptance Made Simple


Every day is an awareness day of some sort or another. Usually I can balance these in stride without too much stress—I wear a certain color, I post a status update, or I dedicate something on Caden’s Autism Heroes to the cause. April though is a month dedicated to awareness of both Autism Spectrum Disorders and Primary Immune Deficiencies. Obviously these are both conditions that affect not only my life every day, but also the lives of my children. The effects from these two conditions are as different as day and night; one makes life challenging while one challenges quality of life from day to day. In my experience, autism requires the most public awareness because it is usually the total and complete strangers who make comments or stare while primary immune deficiencies require more awareness on the part of the medical community and researchers who might develop a cure that will prevent my kiddos from having to deal with so many life threatening diseases on such a regular basis. But any way you look at it, both require awareness and I feel compelled to be a part of that awareness. Here’s the problem though…I only have so many hours in the day, so many blogs that I can write, so many awareness pages that I can run, and so many groups that I can talk with. Yep I know I’m not THE awareness savior, but I do feel compelled to do my part because I’m a mom and we do everything we can to improve our kids’ futures. So here’s what I propose to make awareness campaigns much easier and maybe even unnecessary……..

 

Stop assuming the worst case scenario.  That child who is out of control in the middle of the mall may actually be in pain---yep you heard me right. The lights and sounds and smells may actually be painful for someone with a sensory processing disorder or the child may have just had a seizure that makes everything seem brighter, louder, or bigger. Nope, you didn’t see anything that resembled a typical seizure—that’s my point, there are many different types of seizures. The individual who bumps into you may have perceptual difficulties, and that person who can’t quite make eye contact might be telling the total and complete truth but is struggling in the conversation because he or she has a social anxiety disorder.



Give people the benefit of the doubt. Instead of assuming those red sharps containers are for some political party’s drug enablement picture, stop and consider that at this very moment there may be someone in that bathroom stall checking their insulin levels and getting ready to give themselves one of many injections for the day that help to keep them alive. That person who just stumbled on the curb in the parking lot? Instead of assuming that he or she is drunk, why not consider that they might have a neurological condition that makes walking and balance very difficult or that those steps, no matter how awkward, might be a well fought recovery victory after a stroke.



Instead of offering misguided (and usually BAD) advice to a parent struggling, stop and ask yourself what you can do. Let me tell you from experience, we know that other people don’t want to listen to our child screaming, screeching, and wailing. We know that other people don’t find it amusing that our child is lying in the middle of the isle or has pulled an entire shelf of merchandise off in a raging fit. We know all of this and much more but I’ll let you in on a little clue….we don’t enjoy it either but it is often our lives 24/7. We don’t always have that miracle village to watch our kids for us nor do we have the money to pay for a babysitter so that we can pick up the groceries that our family needs for the week. And honestly, we need to give our kids chances to learn because if we isolate them, they will never learn the coping skills that they need to be successful or as successful as they can later in life. While it may seem easy for you to say just put them in an institution, these children ARE our lives and we’ll dedicate every last breath to giving them the best life possible even if that is an inconvenience to you or even ourselves. So instead of criticizing, maybe hold the door for us because carrying a child who has stiffened straighter than a board and has turned to a dead weight isn’t easy. Maybe offer to push the grocery cart out and help us unload the bags in the car because I can guarantee that same child isn’t going to be any easier to get strapped into the car seat. 



If you are really busy, and we understand that you are, just offer a smile or some words of encouragement because it is amazing how much that can counter all of the negative comments and stares that we encounter on a daily basis.



If you are friends with those parents, regardless of the condition, volunteer to help however you are comfortable. I have friends who would love to take a shower every few days but they can’t leave their child unattended long enough to do that. Make an extra casserole for the freezer—having something premade can be a huge relief after a long day of trying medical appointments. Take a coffee or snack to that parent whose child has been in the hospital room for a few days—I’ll let you in on another secret… we don’t leave their bedside even if means skipping food or drinks or sleep. Offer to sit with that single parent while their child is having a medical procedure or surgery; I can’t think of a lonelier time than watching the clock wondering and worrying about your child. Invite our child to a playdate or birthday party; you won’t ever know how much it means to us.





If you are really busy, and we understand that you are, just offer a smile or some words of encouragement because it is amazing how much that can counter all of the negative comments and stares that we encounter on a daily basis.



I guess it boils down to treating each other, even those with visible differences, humanely. And it doesn’t hurt if you remember that not all disabilities are visible. If we could try a little harder to treat other people the way we’d like to be treated, maybe myself and everyone like me wouldn’t have to stress so much over how we’ll be participating in various awareness days. Maybe instead we could just focus on finding cures for all of the diseases and conditions that are affecting our children at an epidemic rate. I know it sounds cliché but when it boils down to it, it really can be that easy.  I want a better future for my children and every other child. My pledge is to work on being less judgmental of others, to assume the best until I know otherwise and to work on day to day acceptance. What will you pledge?

Acceptance Made Simple


Every day is an awareness day of some sort or another. Usually I can balance these in stride without too much stress—I wear a certain color, I post a status update, or I dedicate something on Caden’s Autism Heroes to the cause. April though is a month dedicated to awareness of both Autism Spectrum Disorders and Primary Immune Deficiencies. Obviously these are both conditions that affect not only my life every day, but also the lives of my children. The effects from these two conditions are as different as day and night; one makes life challenging while one challenges quality of life from day to day. In my experience, autism requires the most public awareness because it is usually the total and complete strangers who make comments or stare while primary immune deficiencies require more awareness on the part of the medical community and researchers who might develop a cure that will prevent my kiddos from having to deal with so many life threatening diseases on such a regular basis. But any way you look at it, both require awareness and I feel compelled to be a part of that awareness. Here’s the problem though…I only have so many hours in the day, so many blogs that I can write, so many awareness pages that I can run, and so many groups that I can talk with. Yep I know I’m not THE awareness savior, but I do feel compelled to do my part because I’m a mom and we do everything we can to improve our kids’ futures. So here’s what I propose to make awareness campaigns much easier and maybe even unnecessary……..
 
Stop assuming the worst case scenario.  That child who is out of control in the middle of the mall may actually be in pain---yep you heard me right. The lights and sounds and smells may actually be painful for someone with a sensory processing disorder or the child may have just had a seizure that makes everything seem brighter, louder, or bigger. Nope, you didn’t see anything that resembled a typical seizure—that’s my point, there are many different types of seizures. The individual who bumps into you may have perceptual difficulties, and that person who can’t quite make eye contact might be telling the total and complete truth but is struggling in the conversation because he or she has a social anxiety disorder.

Give people the benefit of the doubt. Instead of assuming those red sharps containers are for some political party’s drug enablement picture, stop and consider that at this very moment there may be someone in that bathroom stall checking their insulin levels and getting ready to give themselves one of many injections for the day that help to keep them alive. That person who just stumbled on the curb in the parking lot? Instead of assuming that he or she is drunk, why not consider that they might have a neurological condition that makes walking and balance very difficult or that those steps, no matter how awkward, might be a well fought recovery victory after a stroke.

Instead of offering misguided (and usually BAD) advice to a parent struggling, stop and ask yourself what you can do. Let me tell you from experience, we know that other people don’t want to listen to our child screaming, screeching, and wailing. We know that other people don’t find it amusing that our child is lying in the middle of the isle or has pulled an entire shelf of merchandise off in a raging fit. We know all of this and much more but I’ll let you in on a little clue….we don’t enjoy it either but it is often our lives 24/7. We don’t always have that miracle village to watch our kids for us nor do we have the money to pay for a babysitter so that we can pick up the groceries that our family needs for the week. And honestly, we need to give our kids chances to learn because if we isolate them, they will never learn the coping skills that they need to be successful or as successful as they can later in life. While it may seem easy for you to say just put them in an institution, these children ARE our lives and we’ll dedicate every last breath to giving them the best life possible even if that is an inconvenience to you or even ourselves. So instead of criticizing, maybe hold the door for us because carrying a child who has stiffened straighter than a board and has turned to a dead weight isn’t easy. Maybe offer to push the grocery cart out and help us unload the bags in the car because I can guarantee that same child isn’t going to be any easier to get strapped into the car seat. 

If you are really busy, and we understand that you are, just offer a smile or some words of encouragement because it is amazing how much that can counter all of the negative comments and stares that we encounter on a daily basis.

If you are friends with those parents, regardless of the condition, volunteer to help however you are comfortable. I have friends who would love to take a shower every few days but they can’t leave their child unattended long enough to do that. Make an extra casserole for the freezer—having something premade can be a huge relief after a long day of trying medical appointments. Take a coffee or snack to that parent whose child has been in the hospital room for a few days—I’ll let you in on another secret… we don’t leave their bedside even if means skipping food or drinks or sleep. Offer to sit with that single parent while their child is having a medical procedure or surgery; I can’t think of a lonelier time than watching the clock wondering and worrying about your child. Invite our child to a playdate or birthday party; you won’t ever know how much it means to us.


If you are really busy, and we understand that you are, just offer a smile or some words of encouragement because it is amazing how much that can counter all of the negative comments and stares that we encounter on a daily basis.

I guess it boils down to treating each other, even those with visible differences, humanely. And it doesn’t hurt if you remember that not all disabilities are visible. If we could try a little harder to treat other people the way we’d like to be treated, maybe myself and everyone like me wouldn’t have to stress so much over how we’ll be participating in various awareness days. Maybe instead we could just focus on finding cures for all of the diseases and conditions that are affecting our children at an epidemic rate. I know it sounds cliché but when it boils down to it, it really can be that easy.  I want a better future for my children and every other child. My pledge is to work on being less judgmental of others, to assume the best until I know otherwise and to work on day to day acceptance. What will you pledge?

Monday, March 19, 2012

The Tale of a Super Service Dog

Yesterday something happened that we haven’t been able to do for a very, very long time---years in fact. We were able to make an appointment at a portrait studio, keep the appointment, and actually get pictures taken.  Not just any pictures—pictures of both kids together, and even more amazingly pictures of both kids INDIVIDUALLY. Yep, I mean Caden had his picture taken totally and completely by himself. And we walked out without any tears, if you don’t count the ones that my husband shed as he was looking over the receipt. 



Oh don’t get me wrong, we had limitations. Caden wasn’t going to lay down for any pictures and he was pretty determined that he was sitting criss-cross applesauce, but he was smiling and at least looking in the direction of the camera.  In fact, on our way out, he wanted to know when we could get pictures again. Then my husband cried some more because he knows that this may be the beginning of a very long and expensive relationship between me and the portrait studio because there isn’t much I enjoy more in the world than planning and executing pictures of my beautiful kiddos. And honestly I’ve got years to make up when it comes to Caden, but I probably won’t push my luck……..too much.



So what’s changed? Yes, Caden has gotten older, but the one thing we are finding out the hard way is that autism just gets older too. Challenges exist, they just change over time.  Once we figure out one thing, there is something new to deal with. But maybe that also means that we are dealing with the old things well enough to make them…well…old things that we already dealt with. Maybe the stars and moon were perfectly aligned. Maybe the luck-of-the-Irish was still with us even though we aren’t even close to being Irish. 



My best explanation though is that 7 months ago we met Caden’s “bestest” friend Elf. I know people probably get sick of me saying it, but the dog has truly been a miracle in our lives. He has given Caden so much peace and security in a way we haven’t been able to that it has allowed Caden to explore life a little. We’ve had several successful trips to the mall. We have had some major medical procedures that I’m not sure we would have handled so well pre-Elf. His anxiety level has significantly decreased in public, and even before and after school transitions (something that has always been an ugly process) have become smooth…most days. Most nights he stays in his room, and we haven’t had nearly the number of night terrors that we were dealing with last summer. Meltdowns still occur, but they don’t seem to last as long because Elf’s kisses and “over” seem to have him giggling quicker than any other tactic we’ve tried over the years.



Don’t get me wrong, Elf has not cured Caden’s autism. We still have a good ol’ fashion case of the communication challenged, social interacting nightmarish combination of repetitive behaviors that define autism so clearly. We still, without a doubt, have all of the sensory processing challenges that we have struggled with for years. We are still very much in a fight to give our son the brightest future possible. We are still very much in a fight against autism.



What’s different though is that we have someone else, a furry mass of unconditional love, to help us in the battle. He’s exactly the additional tool that we were hoping for. The more we practice the better Elf gets at hide-and-find (tracking), he and Caden tether well together, and Elf has figured out behavior disruption more impressively than we ever imagined. In fact, he heard Caden’s screech the other day at the playground even though the entire Children’s House (20ish kids), E1 (15ish kids), and E2 (15ish kids) were at the park screaming and having fun as well. What can I say…he knows his boy.



All of this and he also just happens to be Caden’s best friend too.



The Tale of a Super Service Dog

Yesterday something happened that we haven’t been able to do for a very, very long time---years in fact. We were able to make an appointment at a portrait studio, keep the appointment, and actually get pictures taken.  Not just any pictures—pictures of both kids together, and even more amazingly pictures of both kids INDIVIDUALLY. Yep, I mean Caden had his picture taken totally and completely by himself. And we walked out without any tears, if you don’t count the ones that my husband shed as he was looking over the receipt. 

Oh don’t get me wrong, we had limitations. Caden wasn’t going to lay down for any pictures and he was pretty determined that he was sitting criss-cross applesauce, but he was smiling and at least looking in the direction of the camera.  In fact, on our way out, he wanted to know when we could get pictures again. Then my husband cried some more because he knows that this may be the beginning of a very long and expensive relationship between me and the portrait studio because there isn’t much I enjoy more in the world than planning and executing pictures of my beautiful kiddos. And honestly I’ve got years to make up when it comes to Caden, but I probably won’t push my luck……..too much.

So what’s changed? Yes, Caden has gotten older, but the one thing we are finding out the hard way is that autism just gets older too. Challenges exist, they just change over time.  Once we figure out one thing, there is something new to deal with. But maybe that also means that we are dealing with the old things well enough to make them…well…old things that we already dealt with. Maybe the stars and moon were perfectly aligned. Maybe the luck-of-the-Irish was still with us even though we aren’t even close to being Irish. 

My best explanation though is that 7 months ago we met Caden’s “bestest” friend Elf. I know people probably get sick of me saying it, but the dog has truly been a miracle in our lives. He has given Caden so much peace and security in a way we haven’t been able to that it has allowed Caden to explore life a little. We’ve had several successful trips to the mall. We have had some major medical procedures that I’m not sure we would have handled so well pre-Elf. His anxiety level has significantly decreased in public, and even before and after school transitions (something that has always been an ugly process) have become smooth…most days. Most nights he stays in his room, and we haven’t had nearly the number of night terrors that we were dealing with last summer. Meltdowns still occur, but they don’t seem to last as long because Elf’s kisses and “over” seem to have him giggling quicker than any other tactic we’ve tried over the years.

Don’t get me wrong, Elf has not cured Caden’s autism. We still have a good ol’ fashion case of the communication challenged, social interacting nightmarish combination of repetitive behaviors that define autism so clearly. We still, without a doubt, have all of the sensory processing challenges that we have struggled with for years. We are still very much in a fight to give our son the brightest future possible. We are still very much in a fight against autism.

What’s different though is that we have someone else, a furry mass of unconditional love, to help us in the battle. He’s exactly the additional tool that we were hoping for. The more we practice the better Elf gets at hide-and-find (tracking), he and Caden tether well together, and Elf has figured out behavior disruption more impressively than we ever imagined. In fact, he heard Caden’s screech the other day at the playground even though the entire Children’s House (20ish kids), E1 (15ish kids), and E2 (15ish kids) were at the park screaming and having fun as well. What can I say…he knows his boy.

All of this and he also just happens to be Caden’s best friend too.