People seem to think that having a child with special needs comes with
all sorts of wonderful advantages. The word "lucky" rolls off tongues
from uneducated people thinking that having a child with a disability
entitles us to red carpet treatment with champagne wishes and caviar dreams. The misconception that we want for nothing, and the needs of our child are continually met.
This isn't the Life of the Rich and Famous and
Robin Leach is not our host. Having a child with special needs is not a
luxury - of any kind. I don't even want to get started on the word
luxury. It's a word that significantly irritates me every time I think
about it. Life on easy street isn't found in our world - not ever.
And in many instances we are far worse off than the average typical
household is. Here are just a few special needs myths:
Myth #1: Those with special needs are subject to many discounts & promotions, and financial assistance.
These are the types of things we hear often:
The school system will take care of your child, all of their out of pocket therapy costs can be covered there.
(People fail to recognize that there are so many more therapies that are often needed besides SLP, PT and OT).
Children with special needs are subject to receiving SSI benefits, so what the mother is unable to work out of the home.
(SSI is based on a parental income and doesn't automatically guarantee a child benefits of any kind)
You get cool discounts and free access to all national parks.
(I
use the word "free" loosely while it doesn't cost to gain access to the
parks there is a minimal fee to apply for the pass and there are still
restrictions).
Discounts on meals, just like the elderly.
(These
days it's rare when you find a discount at a restaurant for meals for
those with special needs, typically only listing discounts for those in
their Golden Years).
Medicaid covers all medical, equipment and therapy costs.
(Medicaid
has all these great little rules that assist them with denying all that
they can get by with. You'll hear terms like non-medical necessity, no
restorative potential, not a covered benefit. Medicaid also does not
cover a majority of therapy modalities labeling them "alternative").
Grants for therapies are wildly given, and school supplies are donated.
(Finding help through a
grant or donation is very hard and often times requiring involved
applications to determine eligibility. This can be in the form of
covering only specific types of disabilities or based on financial
determinations. It certainly isn't guaranteed).
Myth#2: People shower you with free gifts
We're
all familiar with those feel good stories that the media reports; a
stranger paying a dinner bill for a family that has a child with special
needs, offering a child in a wheelchair a free cookie, loving
foundations that throw gifts your way at Christmas and businesses
donating handicapped accessible wheelchair vans. But here's the thing -
those instances are Rare with a capital R. Everyone loves a feel good
story and while these types of heartwarming reports restore my faith in
humanity they are not the norm. Five and a half years into special
needs parenting no one has yet to pay our dinner bill. When they see my
child in a wheelchair who is clearly non-verbal they're afraid to offer
him a treat of any kind, and while we've been blessed to find some help
at the holidays it is very difficult as so many families are scrambling
to do the same and help is not something you can rely upon. If you
stalk any special needs group on social media you'll see hundreds of
families begging for handicapped accessible van assistance. In fact you
don't have to look any further than the National Mobility Equipment Dealers Association (NMEDA) site yearly to find thousands of people scrambling to win what is
essentially a voting popularity contest to obtain a handicapped
accessible van.
Myth #3: You receive special treatment
Having
a child with special needs doesn't shoot you to celebrity status. Many
people think if you get to move to the front of the line at Disney, or
get great seats at a baseball game that must mean you're benefiting from
special treatment. The reality is you can't place a wheelchair just
anywhere and often times the designated wheelchair areas happen to be up
front for access purposes. Having a child with special needs also
comes with a variety of challenges. Sensory issues, behavioral issues,
many of children are medically fragile and they simply cannot handle
long waits in line. It becomes not an advantage or "perk" so much as
often a health and safety need and the only potential way of offering
inclusion of any kind.
Myth #4: Accessible Parking
Don't
you wish you could park up front? Likely if you asked most able-bodied
people blindly on the street what they thought the number one
disability perk is, hands down they'd say accessible parking. It's not a
perk, it's a necessity. The reality is you simply just cannot unload a
wheelchair in conventional parking spaces. It also happens to be a
safety issue as those with mobility disabilities sit at a level that
cannot be seen at rear view mirror levels. Many people without a
disability find the urge to often steal these parking spaces and park
illegally, much like they felt the need to be first in line to the water
fountain in grade school. Some people just have that "I must be first"
problem. If you asked a person with a disability how they felt about
you stealing their spot, they'd likely tell you they wish you'd steal
their disability too.
Myth #5: Free Money!
The
fundraising myth. Insurance denies you help, your family says they
can't help you. No problem right? Just have a fundraiser of any kind. A
bake sale, a car wash, an online fundraiser, a jewelry or candle party,
or a restaurant benefit fundraiser and people will just throw money
your way. Or tell your boss how hard up life is because your child
needs a new wheelchair and insurance has denied it because it hasn't
been five years since they last paid for one and your office will take
up a collection to help. The truth is the saddest stories bring in the
most funding, (those families facing near-death situations or funeral
expenses) while the rest of us really don't see a huge success from most
fundraising efforts. And it's not always free, often times special
needs families find themselves giving a "commission" or part of their
fundraising proceeds, to a t-shirt company, a jewelry consultant, or an
online site. Remember in life nothing is free - not even if you have a child with special needs.
The
only one true perk really is that people tend to show their true colors
quicker around special needs. It serves as a fabulous filter for
weeding out true assholes from angels.
Love,
Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.
Friday, July 25, 2014
Thursday, July 24, 2014
Troubleshooting the Unknown
Take a deep breath I tell myself. Determine how serious this might be,
or how minor it could be. Figure out how to make it better. Deep down
the basic parenting drive... above all else find a way to make it all
better. There are so many things that seem to be an enigma when it
comes to Noah. I have yet to solve his chronic sleeping disturbances,
and while some nights are better than others without fail Noah and I
together seem to survive on less sleep than any person possibly could.
I keep going through the same thoughts: Is he too cold? Too hot? Stuck and can't roll over? Sick? In pain? Merely getting comfortable and making lots of noise? Hungry? Thirsty? My mind races at 1am, 3am, 5am.... my body finally exhausted from troubleshooting tries to drift off for a moment of sleep only to realize Noah's little brother is ready for breakfast, and I must get up... now!
And it's not just sleep that I spend my time trying to find a solution for. Two weeks ago at therapy Noah was cradled like a baby and spun around in circles in the pool. I was at the opposite end of the pool taking notes, like I always do, only to look up when I hear the therapist ask Noah what is wrong and if he's okay. My stomach drops thinking what did I miss? What happened that I didn't see? Noah is quickly joined back to the side of the pool where I am and I immediately notice that he is clinching his teeth feverishly. He cannot stop, not even for a second. Constant non-stop grinding and clenching. I try to dismiss it, thinking maybe it's just Noah being Noah. But deep down I know that whatever "vestibular" motion the therapist was seeking by spinning him around triggered something to happen to Noah. I don't know if it was "sensory overload" I don't know if it caused pressure in his head, or his ears, or if it was a defense mechanism to not having control over his own movement. I have no idea. It was the first time Noah has ever experienced motion of this kind. While he was accustomed to jumping up and down a bit in the pool he was never spun around in super fast circles. Most often times we spend the beginning working on self-calming of Noah's body in a Nemo floaty... one that has been deflated and broken for several weeks and likely will never be replaced (as I had to replace the last one myself and "donate" it).
I thought that Noah would eventually relax and that the clinching and grinding would stop. I remember Noah having a touch of bruxism as a young baby and toddler but it's been gone for several years. My concern prompted a doctor's visit, where it is still anyone's guess as to why Noah cannot stop grinding his teeth. A motion that he seems to be doing by moving his jaw side to side a bit rather than clinching by simply biting down directly. And I have zero clue on what to do for him or why it's still continuing to happen now, or how to get him to stop.
I'll admit there is a lot of guilt to the unknown as well. You feel like you failed to protect your child or fix the problem that your child is experiencing. Having a non-verbal child is particularly hard when it comes to this. A child that lacks the ability to communicate and explain what they are feeling, experiencing or need. It takes problem-solving as a parent to a whole new level. You find yourself wishing that if aliens do exist that they would pay you a visit so you could beg for extra-terrestrial powers like reading someone's mind, or the power to heal.
All the while you try to tell yourself not to worry too much. After all he doesn't seem to be in discomfort and his spirits for the most part are happy - unless of course you want to take his games away at speech therapy. Then he'll really tell you how he feels about not getting his way. Yet, I still keep searching for answers for all of the unknown.
Love,
Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.
I keep going through the same thoughts: Is he too cold? Too hot? Stuck and can't roll over? Sick? In pain? Merely getting comfortable and making lots of noise? Hungry? Thirsty? My mind races at 1am, 3am, 5am.... my body finally exhausted from troubleshooting tries to drift off for a moment of sleep only to realize Noah's little brother is ready for breakfast, and I must get up... now!
And it's not just sleep that I spend my time trying to find a solution for. Two weeks ago at therapy Noah was cradled like a baby and spun around in circles in the pool. I was at the opposite end of the pool taking notes, like I always do, only to look up when I hear the therapist ask Noah what is wrong and if he's okay. My stomach drops thinking what did I miss? What happened that I didn't see? Noah is quickly joined back to the side of the pool where I am and I immediately notice that he is clinching his teeth feverishly. He cannot stop, not even for a second. Constant non-stop grinding and clenching. I try to dismiss it, thinking maybe it's just Noah being Noah. But deep down I know that whatever "vestibular" motion the therapist was seeking by spinning him around triggered something to happen to Noah. I don't know if it was "sensory overload" I don't know if it caused pressure in his head, or his ears, or if it was a defense mechanism to not having control over his own movement. I have no idea. It was the first time Noah has ever experienced motion of this kind. While he was accustomed to jumping up and down a bit in the pool he was never spun around in super fast circles. Most often times we spend the beginning working on self-calming of Noah's body in a Nemo floaty... one that has been deflated and broken for several weeks and likely will never be replaced (as I had to replace the last one myself and "donate" it).
I thought that Noah would eventually relax and that the clinching and grinding would stop. I remember Noah having a touch of bruxism as a young baby and toddler but it's been gone for several years. My concern prompted a doctor's visit, where it is still anyone's guess as to why Noah cannot stop grinding his teeth. A motion that he seems to be doing by moving his jaw side to side a bit rather than clinching by simply biting down directly. And I have zero clue on what to do for him or why it's still continuing to happen now, or how to get him to stop.
I'll admit there is a lot of guilt to the unknown as well. You feel like you failed to protect your child or fix the problem that your child is experiencing. Having a non-verbal child is particularly hard when it comes to this. A child that lacks the ability to communicate and explain what they are feeling, experiencing or need. It takes problem-solving as a parent to a whole new level. You find yourself wishing that if aliens do exist that they would pay you a visit so you could beg for extra-terrestrial powers like reading someone's mind, or the power to heal.
All the while you try to tell yourself not to worry too much. After all he doesn't seem to be in discomfort and his spirits for the most part are happy - unless of course you want to take his games away at speech therapy. Then he'll really tell you how he feels about not getting his way. Yet, I still keep searching for answers for all of the unknown.
Love,
Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.
Thursday, July 17, 2014
Rear View Mirror
We made the decision to venture out to the Mopar Block Party tonight.
It's something we did for years before Noah was born, and several times
after. The event that pretty much kicks off the three days of the Mile
High Nationals of NHRA drag racing. I don't think Chris and I ever
completely abandoned our love of racing and it's always been a fun
night, to walk around look at cars, obtain autographs and talk to
drivers.
I remember taking Noah the very first year. He was 6 months old, and it was a completely nightmare for him and for us. Noah was never a good car traveler. He got so upset on the way home. We figured like most parents he'd just cry it out. We had no idea that he was causing himself to vomit over and over again, while hysterically crying, grunting, snorting, all the while serving for the perfect storm for aspirating on his vomit. The entire backseat was covered, and he was so young he was rear facing in the car, so we didn't really know the gravity of the situation until we had reached home. We felt terrible. It was the last time we ever contemplated the cry it out method for anything. We quickly realized cry it out equaled life-threatening. If Noah so much as even whimpered we pulled over until he stopped. To say the least we didn't get very far from home - if at all because of that.
You'd think we'd be crazy to do it again after that first experience with Noah, but we've learned the art of assisting Noah. While one person drives, the other is on Noah duty. Coming to his rescue if his movie ends and he needs another for self-soothing, if he gets upset, if he needs anything at all. I rarely, if ever travel long distances alone with Noah just for that reason.
Over the years the Mopar Party has changed a bit, now there are not that many cars and food vendors have been replaced with beer stands forcing hungry people into nearby restaurants. The music is just as loud, but this year I didn't find it wheelchair friendly. People were just oblivious to a wheelchair trying to navigate the crowd, sidewalk access remained blocked not only by vendors but also by people who just gathered there refusing to move Lifting a wheelchair over curbs isn't all that fun. And Noah was agitated that people would not part for him like the Red Sea blocking his ability to move anywhere.
We wound up walking to the creek and abandoning the block party altogether. The creek was peaceful, but the water was running high so you could hear the rush and force of it hitting the rocks. I used to walk that creek a lot, especially when I used to work in that area so many years ago. A different lifetime. It feels like looking in the rear view mirror. Everything feels so different. Stores, businesses, and restaurants have come and gone. As much as you wish things stayed the same they just don't. Life goes on without you.
This may have been our last year going - I don't really know. Chris loves it, and I know before our boys were born we always dreamed they'd share our love of cars and racing. But the reality is Noah will never be able to race, we can't even comfortably take him to the Mile High Nationals in excessive heat with no suitable shelter from the sun, and it's doubtful we'll ever be lucky enough to obtain tower seats behind the Christmas tree (race language for the lights that count down before you punch the gas). And we're a family that really believes in staying together. Our belief has always been, no one gets left behind. As much as you once loved something in your life, occasionally you have to say goodbye to it and that's okay.
Love,
Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.
NHRA drivers signing autographs |
I remember taking Noah the very first year. He was 6 months old, and it was a completely nightmare for him and for us. Noah was never a good car traveler. He got so upset on the way home. We figured like most parents he'd just cry it out. We had no idea that he was causing himself to vomit over and over again, while hysterically crying, grunting, snorting, all the while serving for the perfect storm for aspirating on his vomit. The entire backseat was covered, and he was so young he was rear facing in the car, so we didn't really know the gravity of the situation until we had reached home. We felt terrible. It was the last time we ever contemplated the cry it out method for anything. We quickly realized cry it out equaled life-threatening. If Noah so much as even whimpered we pulled over until he stopped. To say the least we didn't get very far from home - if at all because of that.
You'd think we'd be crazy to do it again after that first experience with Noah, but we've learned the art of assisting Noah. While one person drives, the other is on Noah duty. Coming to his rescue if his movie ends and he needs another for self-soothing, if he gets upset, if he needs anything at all. I rarely, if ever travel long distances alone with Noah just for that reason.
Over the years the Mopar Party has changed a bit, now there are not that many cars and food vendors have been replaced with beer stands forcing hungry people into nearby restaurants. The music is just as loud, but this year I didn't find it wheelchair friendly. People were just oblivious to a wheelchair trying to navigate the crowd, sidewalk access remained blocked not only by vendors but also by people who just gathered there refusing to move Lifting a wheelchair over curbs isn't all that fun. And Noah was agitated that people would not part for him like the Red Sea blocking his ability to move anywhere.
We wound up walking to the creek and abandoning the block party altogether. The creek was peaceful, but the water was running high so you could hear the rush and force of it hitting the rocks. I used to walk that creek a lot, especially when I used to work in that area so many years ago. A different lifetime. It feels like looking in the rear view mirror. Everything feels so different. Stores, businesses, and restaurants have come and gone. As much as you wish things stayed the same they just don't. Life goes on without you.
Walking Clear Creek |
This may have been our last year going - I don't really know. Chris loves it, and I know before our boys were born we always dreamed they'd share our love of cars and racing. But the reality is Noah will never be able to race, we can't even comfortably take him to the Mile High Nationals in excessive heat with no suitable shelter from the sun, and it's doubtful we'll ever be lucky enough to obtain tower seats behind the Christmas tree (race language for the lights that count down before you punch the gas). And we're a family that really believes in staying together. Our belief has always been, no one gets left behind. As much as you once loved something in your life, occasionally you have to say goodbye to it and that's okay.
Love,
Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.
Tuesday, July 15, 2014
Why I Am Now "That Mom"
No matter how you try, inevitably you will look backwards when you look at your life with a child has special needs.
There are some really difficult parts to looking in the past. Some parts of exceptionally haunting and they never go away. I can still find myself up in the middle of the night listening to Noah breathing and I can be transported back to the NICU listening to those beeps and watching his oxygen saturation and heart monitor, my stomach sinking with that part that made you feel like you could vomit and pass out each time you'd hear an alarm sound. Never knowing if this was the last breath Noah would take. The smells are still there too. That darn sterile smell combined with new baby blanket scent, and I can still taste the tears that I cried. The salt and the pain etched in my soul that will never ever heal properly. I've accepted to some degree I will always be the walking wounded. It is impossible to live through that kind of living nightmare in your life and not walk out of it a completely altered person.
And at 1am after you've relived those memories that linger, You start evaluate how your life was before and after living through that moment in time.
Sometimes I think about the person that I was before Noah. I started out as this super quiet, easy going person. Who hated conflict. I mean hated it. I'd avoid it any cost and would rather walk away from something that confront anything that could start tension. I'd never debate how I felt about any given topic, I kept my opinions and feelings much to myself. You certainly would have never known where I stood on any given topic as I was selective with personal disclosure. I never found anything worth a battle or a challenge of any kind.
Then you look at today... where now I have gained that reputation as "That Mom." You know... "That Mom," that every equipment vendor shutters at the name of, that some therapists roll their eyes at, that suppliers and vendors dread because they know I'll call them out for tardiness, that caseworkers don't want to deal with because I challenge them on the "rules" that they make up along the way. The mom that no one really wants to deal with. Because you aren't afraid to challenge them on everything if need be.
How did I get that way? How did I go from the introvert to the extrovert?
It started out initially from people pushing my special needs buttons one too many times. You can only lie to a parent so many times, you can only find so many ways of avoiding helping their child so many times, you can only fail to do you job one too many times before "That Mom" is born. Sometimes being a loud voice is the only thing that will get anyone's attention. And if that means you have to step on some toes and deal with supervisors and managers or even government agencies or politicians... then you do it. I can guarantee you that no one is losing sleep over the fact that they aren't helping your child. It is just a job to them. To you this is about your child's life. This isn't about how to Win Friends and Influence People. Although as a side note that book authored by Dale Carnagie has good value. However, I'm certainly really not all that concerned with arousing resentment or making people like me along the way, and when dealing with the government system specifically I am convinced there is no way to win them to my way of thinking. My focus is on making sure Noah is taken care of and that others are doing the best job the they can to assist him, and in the end if that doesn't make me very popular, then so be it.
Trust me, I'm not the only one of my kind out there. There are lots of us out there.
Now my "That Mom" reputation should not be confused with being a difficult person to handle or get along with or even being a genuinely likeable person. It's simply the mom that calls you out the balderdash you feed her. A special needs mother's biggest pet peeve is when you are working against her, and not for the benefit of her child. Without question it will make us put on our combat gear each and every time. We are hardly hesitant to wage war on those not doing their jobs or are standing in our way. If you're doing your job, and doing it well you'll never have to worry about us barking up your tree.
Personally I wear that title as a beautiful badge. It means that I'm doing my job well as a special needs parent. I'm proud that I am "That Mom." Because it means that I will insist that you do right by my child and do your job as a professional working with those who have disabilities.
Although I'll admit I am still nursing my sadness from losing the fight for a piece of equipment that would have really made a tremendous difference in Noah's life. I know that I must carry on and be "That Mom."
(If you feel led to help Noah on his quest to crawl please feel free to visit his online fundraiser here): http://www.youcaring.com/medical-fundraiser/help-noah-with-a-chance-to-crawl-/202638
Love,
Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.
There are some really difficult parts to looking in the past. Some parts of exceptionally haunting and they never go away. I can still find myself up in the middle of the night listening to Noah breathing and I can be transported back to the NICU listening to those beeps and watching his oxygen saturation and heart monitor, my stomach sinking with that part that made you feel like you could vomit and pass out each time you'd hear an alarm sound. Never knowing if this was the last breath Noah would take. The smells are still there too. That darn sterile smell combined with new baby blanket scent, and I can still taste the tears that I cried. The salt and the pain etched in my soul that will never ever heal properly. I've accepted to some degree I will always be the walking wounded. It is impossible to live through that kind of living nightmare in your life and not walk out of it a completely altered person.
And at 1am after you've relived those memories that linger, You start evaluate how your life was before and after living through that moment in time.
Sometimes I think about the person that I was before Noah. I started out as this super quiet, easy going person. Who hated conflict. I mean hated it. I'd avoid it any cost and would rather walk away from something that confront anything that could start tension. I'd never debate how I felt about any given topic, I kept my opinions and feelings much to myself. You certainly would have never known where I stood on any given topic as I was selective with personal disclosure. I never found anything worth a battle or a challenge of any kind.
Then you look at today... where now I have gained that reputation as "That Mom." You know... "That Mom," that every equipment vendor shutters at the name of, that some therapists roll their eyes at, that suppliers and vendors dread because they know I'll call them out for tardiness, that caseworkers don't want to deal with because I challenge them on the "rules" that they make up along the way. The mom that no one really wants to deal with. Because you aren't afraid to challenge them on everything if need be.
How did I get that way? How did I go from the introvert to the extrovert?
It started out initially from people pushing my special needs buttons one too many times. You can only lie to a parent so many times, you can only find so many ways of avoiding helping their child so many times, you can only fail to do you job one too many times before "That Mom" is born. Sometimes being a loud voice is the only thing that will get anyone's attention. And if that means you have to step on some toes and deal with supervisors and managers or even government agencies or politicians... then you do it. I can guarantee you that no one is losing sleep over the fact that they aren't helping your child. It is just a job to them. To you this is about your child's life. This isn't about how to Win Friends and Influence People. Although as a side note that book authored by Dale Carnagie has good value. However, I'm certainly really not all that concerned with arousing resentment or making people like me along the way, and when dealing with the government system specifically I am convinced there is no way to win them to my way of thinking. My focus is on making sure Noah is taken care of and that others are doing the best job the they can to assist him, and in the end if that doesn't make me very popular, then so be it.
Trust me, I'm not the only one of my kind out there. There are lots of us out there.
Now my "That Mom" reputation should not be confused with being a difficult person to handle or get along with or even being a genuinely likeable person. It's simply the mom that calls you out the balderdash you feed her. A special needs mother's biggest pet peeve is when you are working against her, and not for the benefit of her child. Without question it will make us put on our combat gear each and every time. We are hardly hesitant to wage war on those not doing their jobs or are standing in our way. If you're doing your job, and doing it well you'll never have to worry about us barking up your tree.
Personally I wear that title as a beautiful badge. It means that I'm doing my job well as a special needs parent. I'm proud that I am "That Mom." Because it means that I will insist that you do right by my child and do your job as a professional working with those who have disabilities.
Although I'll admit I am still nursing my sadness from losing the fight for a piece of equipment that would have really made a tremendous difference in Noah's life. I know that I must carry on and be "That Mom."
(If you feel led to help Noah on his quest to crawl please feel free to visit his online fundraiser here): http://www.youcaring.com/medical-fundraiser/help-noah-with-a-chance-to-crawl-/202638
Love,
Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.
Thursday, July 10, 2014
Never Good Enough
Be still my aching heart...
After five and a half years, I've done my best to stand tall - that tree you cannot shake. That mom that never stops fighting... advocating... trying. But it doesn't matter how hard much I struggle, how hard I work, the countless hours I spend drafting paperwork, writing emails, all the phone conversations, coordinating therapies and in the middle of it caring for two very young boys, one of which requires hands on care for all of his daily living needs.
I project that faith and confidence that I can conquer it all. And time and time again I stand defeated. I find myself thinking of ways to conceal my pain. I purposely avoid discussing my feelings, the difficulties each day brings. I know that if I openly poured my heart out there, I'd sound like that broken record that plays my heart is bleeding over and over again if I went down that road. And I'm Noah's mom. I'm the strong one. The one everyone looks to for help, support and advice. I am the rock. I'd let everyone down if they knew their life-line was often times a crumbling mess behind the scenes, having her own pity party.
The fight for the Krabat Pilot Crawling device has officially come to an end. I submitted a nearly 20 page Motion for Reconsideration with 11 Exhibits. I spent off and on two days drafting it. My last chance for Noah. I poured all the positive energy I could find into it. Noah's win was reversed on a "safety" question of the device, and I spent so much time documenting safety, right down to calling Norway to get all the safety testing results, trials and FDA approval documentation. The State did not to even file a Response to my Motion for Reconsideration. They likely knew they didn't have to respond. The decision was already written on the walls before I even had a chance to type my first word. It was denied on the basis that I failed to demonstrate "a showing that the Final Agency Decision was based upon a clear or plain error or fact of law. " I dedicated 10 months towards fighting for a crawling device opportunity for Noah. I even watched that precious child get up on all fours for the first time in his life two weeks ago and said yes baby momma's going to come through for you so you can take off....
And I failed.
I don't know if Noah will ever understand how truly sorry I am for all of it.
I am not sure what to do next. My fundraising efforts have seriously sucked lately. I don't have time to bake brownies, or after all make potato salad. I'm doing my best to try to find a foundation or grant to help me, but I've used so many along the way, that it is now like finding a needle in a haystack.
In the middle of all this I am also trying to find a way to convince Medicaid to fund Noah's bathroom modification. Even though it's listed as a covered benefit under his Medicaid waiver, a "luxury" they all say.
NEWSFLASH *** My life is anything but luxurious *** Although I love Noah with every fiber of my being, having a child with such severe disabilities is the hardest thing I've ever experienced in my life. And I've been through some really hard times during my life. And this hands down is the hardest thing God has ever laid before me. I try to bring grace, tenderness and incredible love to each task before me, while doing my best not to complain about the hardships.
I'm not even sure where to start with discussing what all is starting to be involved in a bathroom modification request, other than to say that I already feel very defeated, and I haven't even touched the surface yet on all I'm going to have to draft, research and submit. The writing already seems to be on the wall for that too... you just wait on those words... DENIED. There is no positive feeling about any of it. I've just done this dance way too many times to know the probability of how it will end. In a way it makes me feel so stupid for trying. It shouldn't be this hard to provide for Noah's needs. Society has this misconception that the government just provides for children like Noah. If you could only feel my tears at this moment and really understand what this is all like. Have a firm realization of what our reality is with a child with special needs. Everyday is an uphill battle and I'm always going to war on Noah's behalf. In the end it's so cliche that the harder you try, the harder you fall.
"The human spirit is never finished when it's defeated... it is finished when it surrenders." Ben Stein.
Love,
Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.
After five and a half years, I've done my best to stand tall - that tree you cannot shake. That mom that never stops fighting... advocating... trying. But it doesn't matter how hard much I struggle, how hard I work, the countless hours I spend drafting paperwork, writing emails, all the phone conversations, coordinating therapies and in the middle of it caring for two very young boys, one of which requires hands on care for all of his daily living needs.
I project that faith and confidence that I can conquer it all. And time and time again I stand defeated. I find myself thinking of ways to conceal my pain. I purposely avoid discussing my feelings, the difficulties each day brings. I know that if I openly poured my heart out there, I'd sound like that broken record that plays my heart is bleeding over and over again if I went down that road. And I'm Noah's mom. I'm the strong one. The one everyone looks to for help, support and advice. I am the rock. I'd let everyone down if they knew their life-line was often times a crumbling mess behind the scenes, having her own pity party.
The fight for the Krabat Pilot Crawling device has officially come to an end. I submitted a nearly 20 page Motion for Reconsideration with 11 Exhibits. I spent off and on two days drafting it. My last chance for Noah. I poured all the positive energy I could find into it. Noah's win was reversed on a "safety" question of the device, and I spent so much time documenting safety, right down to calling Norway to get all the safety testing results, trials and FDA approval documentation. The State did not to even file a Response to my Motion for Reconsideration. They likely knew they didn't have to respond. The decision was already written on the walls before I even had a chance to type my first word. It was denied on the basis that I failed to demonstrate "a showing that the Final Agency Decision was based upon a clear or plain error or fact of law. " I dedicated 10 months towards fighting for a crawling device opportunity for Noah. I even watched that precious child get up on all fours for the first time in his life two weeks ago and said yes baby momma's going to come through for you so you can take off....
And I failed.
I don't know if Noah will ever understand how truly sorry I am for all of it.
I am not sure what to do next. My fundraising efforts have seriously sucked lately. I don't have time to bake brownies, or after all make potato salad. I'm doing my best to try to find a foundation or grant to help me, but I've used so many along the way, that it is now like finding a needle in a haystack.
In the middle of all this I am also trying to find a way to convince Medicaid to fund Noah's bathroom modification. Even though it's listed as a covered benefit under his Medicaid waiver, a "luxury" they all say.
NEWSFLASH *** My life is anything but luxurious *** Although I love Noah with every fiber of my being, having a child with such severe disabilities is the hardest thing I've ever experienced in my life. And I've been through some really hard times during my life. And this hands down is the hardest thing God has ever laid before me. I try to bring grace, tenderness and incredible love to each task before me, while doing my best not to complain about the hardships.
I'm not even sure where to start with discussing what all is starting to be involved in a bathroom modification request, other than to say that I already feel very defeated, and I haven't even touched the surface yet on all I'm going to have to draft, research and submit. The writing already seems to be on the wall for that too... you just wait on those words... DENIED. There is no positive feeling about any of it. I've just done this dance way too many times to know the probability of how it will end. In a way it makes me feel so stupid for trying. It shouldn't be this hard to provide for Noah's needs. Society has this misconception that the government just provides for children like Noah. If you could only feel my tears at this moment and really understand what this is all like. Have a firm realization of what our reality is with a child with special needs. Everyday is an uphill battle and I'm always going to war on Noah's behalf. In the end it's so cliche that the harder you try, the harder you fall.
"The human spirit is never finished when it's defeated... it is finished when it surrenders." Ben Stein.
Love,
Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.
Wednesday, July 9, 2014
Contributing to Nothing
You may have heard in the media recently about a Kickstarter campaign
recently to make Potato Salad. For those of you who aren't familiar
with Kickstarter, it is a crowd-funding site geared towards raising
funds for creative projects. For instance I could say that I want to
make a documentary about what it's like to raise Noah, make my
Kickstarter with a hypothetical goal of $100,000 to produce it and sit
and wait for people to throw a donation towards my creative idea with
the hopes I meet my hopeful financial goal. Along the way I can offer
incentives for your donation. I'll give you a pin with Noah's picture
on it if you donate $10, and if you donate $1,000 I'll give you an
autographed copy of my video signed by Noah himself.... that kind of
thing.
While I'm sure there are some great inventions and ideas just floating out there in cyberspace, this idea that the Potato Salad Campaign was listed at $71,000 (now adjusted back to $42,000) towards a raised hopeful goal of $10 is starting to stir up some valid feelings for special needs families that are often primarily dependent upon donations and fundraising methods to cover uninsured therapy, medical, equipment, home modification and handicapped accessible vehicle costs. While many special needs fundraisers find some success, others might find a handful of help, and some other fundraisers go unnoticed thereby being completely unsuccessful. But rarely if ever will you find a special needs fundraiser that even gets close to $42,000 and currently growing in success at this very moment.
As a collective society, we're totally messed up. Clearly if you stack any medically fragile child up against making potato salad and potato salad wins, we have a big problem. People would rather contribute to the idea of someone wanting to make potato salad than putting hard earned dollars towards making a difference in someone else's life. You think it would be an easy decision to make. Contribute to an absurd online fundraiser or do something life changing. And at the end of the day you can say what? I gave money to some dude on the internet to make potato salad? Or do you want to wake up in the morning and say you know what I gave some help towards a child in need.
I've heard the argument lots of times before. Who do I really know that I'm donating to needs it? What about fake fundraisers with children that don't really need it. Maybe there are a few scams out there, but I can tell you living this life that most all of the pleas for help that you see are very real and very valid. If you are willing to throw money at potato salad then it shouldn't matter to you if you happen gamble on a special needs fundraiser and not personally knowing the child or family in which you are donating to.
The internet is full of buzz...
"You're helping this guy live his dreams"
"He's funny and charming"
"He promised us all a pizza party!"
"He's a hero"
So that's what we're missing when we ask for people to make precious donations towards something our children need that we can't otherwise obtain without generous and loving donations? Last time I checked all of our little special needs children were heroes. You are most certainly helping these children live their dreams. Our children are both funny and charming and bonus come with a multitude of other amazing characteristics. And I'll promise anyone a pizza party if you help my child with special needs.
So why potato salad? https://www.kickstarter.com/projects/324283889/potato-salad
Noah's Fundrazr started 6 months ago, continues to sit at zero donated dollars http://fnd.us/c/af9P5/sh/5Djae
Love,
Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.
While I'm sure there are some great inventions and ideas just floating out there in cyberspace, this idea that the Potato Salad Campaign was listed at $71,000 (now adjusted back to $42,000) towards a raised hopeful goal of $10 is starting to stir up some valid feelings for special needs families that are often primarily dependent upon donations and fundraising methods to cover uninsured therapy, medical, equipment, home modification and handicapped accessible vehicle costs. While many special needs fundraisers find some success, others might find a handful of help, and some other fundraisers go unnoticed thereby being completely unsuccessful. But rarely if ever will you find a special needs fundraiser that even gets close to $42,000 and currently growing in success at this very moment.
As a collective society, we're totally messed up. Clearly if you stack any medically fragile child up against making potato salad and potato salad wins, we have a big problem. People would rather contribute to the idea of someone wanting to make potato salad than putting hard earned dollars towards making a difference in someone else's life. You think it would be an easy decision to make. Contribute to an absurd online fundraiser or do something life changing. And at the end of the day you can say what? I gave money to some dude on the internet to make potato salad? Or do you want to wake up in the morning and say you know what I gave some help towards a child in need.
I've heard the argument lots of times before. Who do I really know that I'm donating to needs it? What about fake fundraisers with children that don't really need it. Maybe there are a few scams out there, but I can tell you living this life that most all of the pleas for help that you see are very real and very valid. If you are willing to throw money at potato salad then it shouldn't matter to you if you happen gamble on a special needs fundraiser and not personally knowing the child or family in which you are donating to.
The internet is full of buzz...
"You're helping this guy live his dreams"
"He's funny and charming"
"He promised us all a pizza party!"
"He's a hero"
So that's what we're missing when we ask for people to make precious donations towards something our children need that we can't otherwise obtain without generous and loving donations? Last time I checked all of our little special needs children were heroes. You are most certainly helping these children live their dreams. Our children are both funny and charming and bonus come with a multitude of other amazing characteristics. And I'll promise anyone a pizza party if you help my child with special needs.
So why potato salad? https://www.kickstarter.com/projects/324283889/potato-salad
Noah's Fundrazr started 6 months ago, continues to sit at zero donated dollars http://fnd.us/c/af9P5/sh/5Djae
Love,
Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.
Monday, July 7, 2014
Think Before You Park
After driving up and down a 4 level car garage for over a half an hour
just to find a parking space of any kind, I've had my fill of abuse of
handicapped parking spots. 1 out of every 2 cars didn't possess a
handicapped parking plate or tag. And the parking space I finally
wound up in was completely inadequate for unloading a wheelchair or
needing room for a 4 foot ramp. But it is all I could work with
because of the growing trend in everyone thinking they are all entitled
to these handicapped parking spots.
Invisible versus Visible Disabilities:
As a mother who is highly involved in the special needs community, I have a high level of respect for all disabilities regardless of diagnosis, condition and physical or cognitive abilities. However, I think this invisible disability thing with handicapped parking spaces is just out of control. Sure there are invisible disabilities, but not when it comes to disabled parking. Disability parking spaces have stringent guidelines that provide for mobility problems and challenges. These days anyone can say they have an invisible disability and find an enabling doctor who is tired of hearing about how their migraines affect them walking into a store and sign off on it. I have issues carrying and transferring a severely disabled child with very little sleep that often gives me sciatic nerve and back pain, but that does not make me disabled. Not at all. Doctors really need to start cracking down on those who need these spaces from those who are simply whining, lazy, hypochondriacs who hide behind the label "invisible disability." These are just some types of invisible disabilities: Diabetes, dyslexia, hearing impairments, sleep disorders, chronic pain or arthritis, and post-traumatic stress disorder (PTSD). And yes, people with these types of conditions are going to think that they need to park in handicapped parking spaces.
Here are some common things I hear when it comes to the argument why invisible disabilities should be entitled to handicapped parking spaces:
"I need to conserve my energy"
"I could have a seizure at any time"
"My child might run from me."
It is astonishing that someone who needs to conserve their energy feels the need to park in handicapped parking, but has the energy and physical capabilities to walk three miles around the zoo, showing no signs of exhaustion. Yet we're completely supposed to accept that person needs to conserve their energy and can't possibly walk five spaces more in a parking lot to the front door? Yes you might have a seizure in the parking lot, you also might have a seizure while driving, or in the check out lane. You are taking a handicapped spot from someone who doesn't have a "maybe" situation attached to their condition and is always confined to a wheelchair. I hear from parents of Autism frequently... my child might run from me. Yes, well so does my three year old typical child, therefore I use a toddler leash (which are also made for all ages of children with special needs). Having a front row parking space does not guarantee that they are any safer than parking 2 or 3 more spots away from the front door of an establishment.
I could wake up tomorrow, illegally use Noah's parking tag leaving him at home with his daddy and claim I have an invisible disability while running into the store just because I dropped Noah's wheelchair on my foot. It's that simple. And completely that wrong. And this kind of abuse is happening all the time. When do we stop people who clearly have zero problems with mobility feeling like they are more deserving to take a handicapped parking space than from someone who really needs it? Everyone feels so entitled to these spots that the people they were truly designed to serve cannot access them.
Temporary Conditions:
"I sprained my ankle mowing the yard. Therefore I am entitled to a parking spot until I feel better."
"Broke my leg in a skiing accident."
"I'm pregnant and my feet are swollen."
"I'm overweight, I get winded easier."
First, it's illegal to park without a handicapped license or tag regardless of your temporary condition. And a disability is a permanent life altering condition. If you can walk the mall with your pregnant swollen feet then parking 10 feet closer to the door isn't going to help you any. Putting your feet up will and finding some great compression stockings will. I know from personal experience. Although I feel bad you broke your leg having a good time, doesn't mean you need to park in handicapped at your favorite restaurant while you brag about how you acquired your injury. And so what you sprained your ankle mowing the yard, doesn't qualify you to take a handicapped spot so you can limp your way through the store. And if you are overweight a bit of walking will likely do you good.
Borrowing a License
Just because your Grandpa has a handicapped parking tag after a car accident left him paraplegic and you're going to a concert that will be jammed packed with very little parking does not mean you can legally borrow the parking tag. This unfortunately seems to be a growing problem. If Noah is not physically with me, I cannot legally park in handicapped parking. The license is in his name, and without him as a passenger I am entitled to one big fat ticket. I can walk. Noah cannot. If the person who's name is on the handicapped license or attached to the tag and is not with you, it is illegal to park in handicapped parking.
Just Plain Lazy
I'll only be in the store a minute. No one will ever notice.
This is video is a disturbing example of that kind of arrogance and how that disregard for those who need handicapped parking spaces are impacted by the ego and inconsiderate actions of others:
Look at my New Ride
I just bought a new car, it deserves a front row spot so no one hits it with a grocery cart.
True story, that really happened. A young lady in a store, bragging about her new car that her brother bought her as a gift free and clear, describing the make and model of it. You are taught to be respectful and happy for the success that other people find in life. You congratulate this stranger on their new wonderful gift only to find that the exact car that was described to you is sitting without a license or tag on your way out to your car.
And don't even get me started on the new proposed handicapped wheelchair logo with a figure that implies you have the ability to stand and get out of that wheelchair. Why change the logo? To make people who are literally stealing these precious spots from people who truly need them feel justified in doing so? These days everyone seems to think they have an invisible disability.
Ever wonder why handicapped parking spots have a loading zone, and curb cuts and access isles? Here is a great video that explains all of these features and why they are so important for those with visible disabilities.
You may not realize that wheelchair users also happen to travel in a blind spot, below the field of vision of rear view mirrors, often going unseen by drivers and even pedestrians. Here is an informative video about a wheelchair user and his need for handicapped parking spaces.
Think before you park again in a handicapped spot that is much needed by a wheelchair user. And do your part to stop the abuse. Don't be afraid to confront an able bodied person who is jogging into the store, or a car that doesn't have a handicapped tag or license plate. If they are someone who accidentally forgot to post their tag in the window they'll likely appreciate the fact you cared enough to intervene and patrol these spaces on their behalf and for others like them. And if you have extra time call your local law enforcement agency so that deserving tickets can be issued. We all can play a part in starting to take action to preserve handicapped parking spots for those who truly need them.
Love,
Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.
Invisible versus Visible Disabilities:
As a mother who is highly involved in the special needs community, I have a high level of respect for all disabilities regardless of diagnosis, condition and physical or cognitive abilities. However, I think this invisible disability thing with handicapped parking spaces is just out of control. Sure there are invisible disabilities, but not when it comes to disabled parking. Disability parking spaces have stringent guidelines that provide for mobility problems and challenges. These days anyone can say they have an invisible disability and find an enabling doctor who is tired of hearing about how their migraines affect them walking into a store and sign off on it. I have issues carrying and transferring a severely disabled child with very little sleep that often gives me sciatic nerve and back pain, but that does not make me disabled. Not at all. Doctors really need to start cracking down on those who need these spaces from those who are simply whining, lazy, hypochondriacs who hide behind the label "invisible disability." These are just some types of invisible disabilities: Diabetes, dyslexia, hearing impairments, sleep disorders, chronic pain or arthritis, and post-traumatic stress disorder (PTSD). And yes, people with these types of conditions are going to think that they need to park in handicapped parking spaces.
Here are some common things I hear when it comes to the argument why invisible disabilities should be entitled to handicapped parking spaces:
"I need to conserve my energy"
"I could have a seizure at any time"
"My child might run from me."
It is astonishing that someone who needs to conserve their energy feels the need to park in handicapped parking, but has the energy and physical capabilities to walk three miles around the zoo, showing no signs of exhaustion. Yet we're completely supposed to accept that person needs to conserve their energy and can't possibly walk five spaces more in a parking lot to the front door? Yes you might have a seizure in the parking lot, you also might have a seizure while driving, or in the check out lane. You are taking a handicapped spot from someone who doesn't have a "maybe" situation attached to their condition and is always confined to a wheelchair. I hear from parents of Autism frequently... my child might run from me. Yes, well so does my three year old typical child, therefore I use a toddler leash (which are also made for all ages of children with special needs). Having a front row parking space does not guarantee that they are any safer than parking 2 or 3 more spots away from the front door of an establishment.
I could wake up tomorrow, illegally use Noah's parking tag leaving him at home with his daddy and claim I have an invisible disability while running into the store just because I dropped Noah's wheelchair on my foot. It's that simple. And completely that wrong. And this kind of abuse is happening all the time. When do we stop people who clearly have zero problems with mobility feeling like they are more deserving to take a handicapped parking space than from someone who really needs it? Everyone feels so entitled to these spots that the people they were truly designed to serve cannot access them.
Temporary Conditions:
"I sprained my ankle mowing the yard. Therefore I am entitled to a parking spot until I feel better."
"Broke my leg in a skiing accident."
"I'm pregnant and my feet are swollen."
"I'm overweight, I get winded easier."
First, it's illegal to park without a handicapped license or tag regardless of your temporary condition. And a disability is a permanent life altering condition. If you can walk the mall with your pregnant swollen feet then parking 10 feet closer to the door isn't going to help you any. Putting your feet up will and finding some great compression stockings will. I know from personal experience. Although I feel bad you broke your leg having a good time, doesn't mean you need to park in handicapped at your favorite restaurant while you brag about how you acquired your injury. And so what you sprained your ankle mowing the yard, doesn't qualify you to take a handicapped spot so you can limp your way through the store. And if you are overweight a bit of walking will likely do you good.
Borrowing a License
Just because your Grandpa has a handicapped parking tag after a car accident left him paraplegic and you're going to a concert that will be jammed packed with very little parking does not mean you can legally borrow the parking tag. This unfortunately seems to be a growing problem. If Noah is not physically with me, I cannot legally park in handicapped parking. The license is in his name, and without him as a passenger I am entitled to one big fat ticket. I can walk. Noah cannot. If the person who's name is on the handicapped license or attached to the tag and is not with you, it is illegal to park in handicapped parking.
Just Plain Lazy
I'll only be in the store a minute. No one will ever notice.
This is video is a disturbing example of that kind of arrogance and how that disregard for those who need handicapped parking spaces are impacted by the ego and inconsiderate actions of others:
Look at my New Ride
I just bought a new car, it deserves a front row spot so no one hits it with a grocery cart.
True story, that really happened. A young lady in a store, bragging about her new car that her brother bought her as a gift free and clear, describing the make and model of it. You are taught to be respectful and happy for the success that other people find in life. You congratulate this stranger on their new wonderful gift only to find that the exact car that was described to you is sitting without a license or tag on your way out to your car.
And don't even get me started on the new proposed handicapped wheelchair logo with a figure that implies you have the ability to stand and get out of that wheelchair. Why change the logo? To make people who are literally stealing these precious spots from people who truly need them feel justified in doing so? These days everyone seems to think they have an invisible disability.
Ever wonder why handicapped parking spots have a loading zone, and curb cuts and access isles? Here is a great video that explains all of these features and why they are so important for those with visible disabilities.
You may not realize that wheelchair users also happen to travel in a blind spot, below the field of vision of rear view mirrors, often going unseen by drivers and even pedestrians. Here is an informative video about a wheelchair user and his need for handicapped parking spaces.
Think before you park again in a handicapped spot that is much needed by a wheelchair user. And do your part to stop the abuse. Don't be afraid to confront an able bodied person who is jogging into the store, or a car that doesn't have a handicapped tag or license plate. If they are someone who accidentally forgot to post their tag in the window they'll likely appreciate the fact you cared enough to intervene and patrol these spaces on their behalf and for others like them. And if you have extra time call your local law enforcement agency so that deserving tickets can be issued. We all can play a part in starting to take action to preserve handicapped parking spots for those who truly need them.
Love,
Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.
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