The Special Needs Journey: Moving Forward When Others Leave You Behind

Special needs parents often report that they have strong feelings of being left behind. Relationships that once existed prior to their child with special needs dissolve, friends and family have children meeting milestones, where theirs does not – they feel stuck watching life go by for others while life for them stands still. How do you learn to cope with being left behind?

Have A Talk With Yourself:
There is a tendency to feel a sense of not belonging when others leave you behind. You long to be included and thought of – a phone call - an invite for coffee – a play date for your child. The absolutely worst thing you can do is feel sorry for yourself. You need to have that talk with yourself that says could I really participate even if I was included? Could my overwhelmed sensory sensitive child even handle a play date? Would I even be able to get a wheelchair up the fifteen stairs to my neighbor’s front door? If there are more no’s to all the questions you are asking yourself – then you are missing nothing except an extra hassle. Consider that the universe kind of did you a hidden favor because even if you were included could you really participate?

Proper Assignment of Forgiveness:
Sometimes it is necessary to absolve people from not fully understanding how them moving forward without us hurts. Although it doesn’t excuse everyone, sometimes people simply don’t know how to properly incorporate you into their lives or activities and in their apprehension make the decision to put forth no effort at all. Leaving you behind is easier for them, but harder for you. When we recognize this we have two options: one being we attempt to initiate contact and put forth all the effort, or two: let things be and realize that our special needs life simply makes them too uncomfortable to be a supportive relationship in our life and let them go.

Realizing You Deserve Better:
It can be a very emotionally painful experiences when those closest to you – who you always thought would be there in both good times and in bad disappear – when you needed them the most. Here you are are; sleep deprived, your heart torn into a million pieces, a child that you can’t seem to soothe, doctor’s appointments, specialists, therapists, and then adaptive equipment, your financial stability takes a dive that you realize you will never recover from. You realize that you’re no longer part of the living the perfect fairy tale life club. But rather than put the blame back on yourself for why others can’t rise to the occasion and be a good friend or family member – be kind to yourself and remember you deserve better. You deserve to surround yourself with the best and strongest support system you can find. And if there are people who can’t cut it, then don’t chase after them. It’s a blessing in disguise that they made the decision to leave you behind.

Don’t Give It Much Thought:
Realistically our days are so busy with the everyday extensive needs and care of our child with special needs that we really don’t have the extra time to dwell on the dissolution of relationships. Focus all your positive energy where it matters – your child. Sometimes that means that you have to bury the pain and hurt of others leaving you behind just for a bit. But you have one of the most important jobs ever – and that is the care of your child who is fully dependent upon you. Think to yourself, all those who left you behind are missing out on knowing such an amazing child and family. Their loss, not yours.

Fill That Lonely Spot
We all crave companionship, friendship, and acceptance by others. We always want at least one person that we can run to when the chips are down, and someone who will help celebrate the joys along the way. Sometimes you can’t replace a relationship – especially when it comes to family members. But what you can do is fill that void in your life. Love yourself with the time that you’d invest with others. Take a yoga class to meet with new moms, search out support groups in the community with other special needs parents who are experiencing the same left behind phenomenon that you are, or search out a retreat that you and your child with special needs can attend that will make you feel a part of others and the community.

No matter what just Keep Moving Forward.

Love,



Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.

A Real Life Episode of Black Mirror: Welcome to Electronic Visit Verification for Individuals with Disabilities

It is like the science fiction anthology television series called Black Mirror.  A show that targets the unanticipated consequences of new technologies.  It's generally a dark series with disturbing endings.  Except this time it's not science fiction.  It's real.  The nightmare is real.  A new term that every special needs parent in this country will come to know called Electronic Visit Verification (EVV).  A new federally mandated computer-based telephone program that electronically verifies service visits.

A law signed by President Obama in December 2016, with the disguise of bringing new efficiencies, cost savings, and care improvements to personal care and home healthcare sectors.  This law is known as the 21st Century Cures Act (Section 12006) and includes a wide ranger of measures one of which is the implement of Electronic Visit Verification (EVV) to manage personal care services to start no later than January 1, 2019 and all other home healthcare services by January of 2023.  Per Section 12006 (a)(4)(B) of the Cures Act reduction will not be made to the states that can demonstrate good faith efforts to comply with the technology and adopt it or if they encountered "unavoidable delay" with implementing the system.

Any state that is in non-compliance of EVV starting January of 2019, will lose 1% of Medicaid funding.  So States have an incentive to participate and comply.  In the 21st Century Cures Act provides up to 90 percent federal funding for development and implementation of an EVV system and contract, and up to 75 percent of federal funding for operation and maintenance of the system and software.  Funding is uniquely available to all states that operate their own EVV system or have a contractor (i.e. 3rd party businesses operate the system for them).  Colorado has already contracted with Sandata, an EVV software monitoring agency.

So how does EVV work exactly?  Now that's the dark Black Mirror plot.  It's a phone device that will have GPS, it also has video and sound capabilities.  It will track care provider time by a "check in" and a "check out."  Your location will be linked to a home caller ID with a home phone number, and will require Wi-Fi.   Your location will be monitored at all times.  It's a good sell.  They'll tell you all this:

It's non-invasive
It's not at all an invasion of privacy
It' does not go against HIPAA because it's monitoring all home health care in a home setting
It will reduce fraud and prevent providers for billing for time they aren't with the client
It will provide better client care because big brother is watching
It prevents inaccuracy and double billing
It makes sure the care provider is indeed following all stipulated care plans
It gives the State control over overlapping services and unauthorized services and audits of providers can be conducted remotely via submission of their original data

What they aren't telling you:
It has camera and microphone capabilities on software directly invading privacy and 4th amendment rights (in many software cases these features cannot be disabled for care plan visits and logged care, meaning you are recorded the entire time see a video here for demonstration and verify-ability
The excessive amount of money invested and cost in implementing EVV.
The NCIL (National Council of Independent Living) is opposed to this as discriminatory, an undermining of independent living and consumer direction, and and an invasion of privacy of those with disabilities receiving in home care and PCA services.
It is expensive, burdensome and less effective than traditional methods that are currently in place.
It involves random checks
It will restrict access for those with disabilities in the community since they are being monitored at home via GPS
This will drive providers to quit who wish to protect their privacy over providing care to those with disabilities leaving these individuals at a higher risk for institutionalization rather than being cared for in a home setting.
EVV systems put people on house arrest because they are not allowed to leave home as their attendants will not be paid otherwise
It could cause those with disabilities to lose their services if they are even so much a minute late to be scheduled at home for care
You will be tied to a phone if your battery suddenly dies there is no back up plan and you will go without documented services and provider will not be paid and potentially accused of fraud.
EVV will require voice and speech recognition and if a client has difficulties with speech could also be accused of fraud.
EVV may impose significant liability on States in the form of joint employment.  For instance in our state many parents are managed by home health care agencies and our wages are paid through Medicaid to provide in home care to our own children.  The State may be found to be a joint employer under the FSLA.  The new FLSA companionship rule provides: joint employers are required to pay overtime to personal care and home health workers. As a result, States are likely to encounter a significant financial liability for unpaid overtime costs.
EVV inevitably is going to lead to countless class action lawsuits and violates current laws
Personal data is required to be turned over and managed by 3rd party agencies on behalf of the State.  Meaning your social security number is handed over, your home phone number is handed over, your personal email is required, your voice and and in some cases facial recognition required. 

EVV stands to violates every "invasion of privacy" category that exists.  Modern Tort Law includes for categories that fall under the invasion of privacy. 

• Intrusion of solitude: physical or electronic intrusion into one's private quarters
• Public disclosure of private facts: the dissemination of truthful private information which a reasonable person would find objectionable
• False light: the publication of facts which place a person in a false light, even though the facts themselves may not be defamatory
• Appropriation: the unauthorized use of a person's name or likeness to obtain some benefits
  

Critical: " Intrusion upon seclusion occurs when a perpetrator intentionally intrudes, physically, electronically, or otherwise, upon the private space, solitude, or seclusion of a person, or the private affairs or concerns of a person, by use of the perpetrator's physical senses or by electronic device or devices to oversee or overhear the person's private affairs, or by some other form of investigation, examination, or observation intrude upon a person's private matters if the intrusion would be highly offensive to a reasonable person."

Sandata EVV phones one for each child with special needs that resides in the home provided by a family currently using the system.  Isn't that crazy - look at that!

All of this is going to impact our lives in a great way since I am Noah's in-home Certified Nursing Assistant and I am licensed to care for him in home.  A program designed and funded by Medicaid dollars to help keep children like Noah in a home setting and save the State money from needing to be institutionalized for daily care. Meaning that I will be housebound, I will lose all my privacy, Noah will lose his privacy and he deserves that even if he is disabled, his every move will be tracked and monitored.  All under some really fake umbrella of "reducing fraud."  We are the parents.  We are caring for for them on the front lines, there is no way for us to commit fraud as we're completing these tasks and reporting them by electronic signature and can can change nothing once our care plans have been submitted to the agency for verification of accuracy.  Our children would die otherwise if we weren't providing all the care in these care plans.  You are targeting parents who are on the front lines with their children and making things a million times more hard and complicated.  You are sending the message that our children need to monitored and protected against us.  You are an uninvited intrusion into our lives.  Our consent was never given, yet our rights not even considered with the immediate and fast and quiet implementation that our States are keeping very hush and doing their best to keep it off our field of vision.

I'm already participating in an electronic signature of care plans which is done through a health care agency plan however the terms of what we are doing now, compared to EVV are very different.  We are currently under a consumer directed plan, and not agency driven plan like EVV will be.  Under a consumer directed plan the client can go anywhere in the community (i.e. home, employment, to the grocery store, to get lunch etc.) under an Agency plan it's house arrest sometimes sprinkled with community approved sites if you've gotten prior permission.  But let's be clear you aren't likely leaving your home under an agency plan. Under consumer directed plan for instance a client can be out of the home while a caregiver is paid to assist with groceries and laundry.  You can't do that if you're under an agency directed plan that has a GPS on your every blink and requires you to be confined to home for every care plan and all services.  And does the government really need to know the intimate details of my son's incontinent care and bathing? Would you like the government to watch you pee or take a bath?  Would that sound appealing to you? Not to mention I homeschool his little brother - what about his brother's privacy rights?   It's not just Noah in the home.  I'm here, his brother is here, his dad is here.  We all have privacy rights too just because we happen to have a child that is severely disabled does not mean that any of our rights to privacy are automatically voided.

And I meanwhile the real perpetrators of fraud, the very caseworkers, non-profit community centered boards, CEO's and those managing tax payer dollars in Medicaid funded programs are dodging public audits to even show you where the money is all going.  In my state alone, a CCB caught with their hand in the cookie jar, with personal travel expenses, internet services, and Costco memberships, just to name a few.  You can familiarize yourself with that information by clicking this highlighted link and this highlighted link.

So ask yourself this.  Who is really causing fraud to occur.  And who should we really be looking at first?  I say we start at the top and demand a GPS of all caseworkers, what they are doing with their time get them to report where the money is going that doesn't come to our kids.  Because I'd like to know.  Would you like to know?  You should.  Your taxes should be going to the right place and not into the pockets of those managing Medicaid funding.  And if you want to know just how much Colorado is pouring into EVV rather than putting that towards the care of those with disabilities you can find that information here.

Fingers are certainly being pointed in the wrong direction.   Let's put a GPS on them and confine them in their homes.  That sounds just lovely doesn't it?  Turn about should be fair play right?  Let's see how this all feels if the shoe is on the other foot.   And that my friends would be the ultimate plot twist in this real life Black Mirror episode.  Let this GPS surveillance system be implemented for everyone nationwide and see how everyone likes it and let any and all content be submitted to the government to be used however they wish.

A quote that often comes up in the context of new technology and concerns about government surveillance is Benjamin Franklin's words:  "Those who would give up essential Liberty, to purchase a little temporary Safety, deserve neither Liberty nor Safety."

Love,




Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.

When Disability No Longer Pulls on Heartstrings

It's so cliche when they tell special needs parents that things get easier.  That's so much pure bullshit.  That's just fluff to make you feel better in the moment.  The raw and hard truth is that the entire journey is messy, complicated, and gets harder every single year.  Our cortisol stress levels are variable at best - but it's not smooth sailing when you get to age five or six or seven.   There are lots of elements that do change however.  In the beginning there is generally more support than you find in later years.  I remember back and it felt like I had so many hands reaching in to rescue me.   I had friends once upon a time that would hold church fundraisers, co-workers who rallied to pay for the thousands of dollars that it cost for Noah's flight for life bills to be transported to Children's to try to save his life when our insurance policy didn't cover it.  People fed us, restaurants hosted days to donate, people came to the hospital to visit, to pray, to hold my hand.  Gifts and prayer books poured in and served as comforting reminders that I'd find my way out of this - as I clung to the hope that my son wouldn't die.  I had people in my corner.  Lots of them.  Too many to count.  And needed every single one.  The truth is I still really do. 

And then things started to change.  The older Noah got people started to realize that all the support in the world wouldn't "cure" him or make him "better."  No amount of money in the world would fix Noah's catastrophic brain damage.  It became too hard for those closest to me to witness my pain and to see a little boy in their eyes that struggled physically.  People drifted both casually and quietly.  It didn't happen all at once.  People disappeared at their own pace dwindling until the point of there being no one else left.   And with them left all the comforting hugs, the listening ears, the support and the shoulders I needed to soak with endless tears. I was now forever alone in all this.  And it's been that way ever since. I'll grasp in the dark here and there for someone only to realize that I'm simply a stepping stone for them as they fight for their own child with special needs or until they realize the gravity of my special needs parenting and all that comes along with my life now. 

Help is no longer volunteered or offered.  People will no longer just take it upon themselves to rise to the occasion and see your struggle.  They put blinders on and let you fend for yourself.  Which resulted in me murdering my pride in an ugly cry in the middle of the kitchen floor and asking and begging for help.  It was brutal and heartbreaking much like a broken child that you know would never be whole again.  That precious Stacy has died a thousand times - all because of the hand she's been dealt time and time again. 

But despite intentionally and brutally killing of pride, the fundraisers and pleas for help were mildly successful at best, and now that Noah is nine fundraisers don't amount to any help at all.  There are a variety of reasons for that.  Noah is past the baby-stage where his sweet blue eyes tugged on people's heartstrings. His precious tenderness has grown into a little boy trapped in a body that doesn't work.  

The most successful fundraisers and help always comes when you post the tragic reality of our lives.  A picture of our child being rescued by EMT workers; carried off in an ambulance; or laying helplessly in a hospital bed.  In all of Noah's moments of crisis it's never been on my field of vision to take pictures of it or document it in that way.  The first thing on my mind is always please God just let him live, not how many pictures can I take with my cell phone and post it as quickly to social media as possible.  I'm just different in that way - even though I know that is what tugs on people's heartstrings.   I know that pictures speak a thousand words and that help will go to those who appear to be in a dire situation.   But Noah's situation is dire.  It's just how I chose to present that to the world.

Noah's needs are no less because of his age, or because I don't attach a really scary and sad picture to his fundraisers.  No less important because I am more selective on sharing the harder parts.  People see a crystal blued eyed little boy who looks "typical" in pictures.  It is such a misconception that disability comes with a physical deformity or appearance.  That the severity of Noah's disability must not be that bad if he can smile and look precious.  The reality is that Noah's cerebral palsy is the worst that it gets.  Short of having a trach and a g-tube it can't get much worse.  He will never have any level of independence.  He will be forever dependent on 100 percent care.  And a lot of stuff comes along with that.  He needs much more equipment, he needs more supplies, he needs more support than the child with cerebral palsy that can talk or self feed, or that is only wheelchair bound or one that just uses a walker but has all other bodily functions.  Noah is like having a nine year old baby. 

But none of that tugs on heartstrings.  Now that he's older even in public he's just seen as another wheelchair user.  A older boy who is adored and loved beyond measure by his devoted parents, but one that isn't suffering enough in the eyes of strangers or social media to warrant any kind of incredible heart to be his hero.  

What about Medicaid and his Waiver?  The ultimate failures in Noah's life right now.  I fight so incredibly hard for him - harder than most are capable of fighting.  I have lost everything so I have nothing else to lose but to claw and fight back. All of it making made me a very unpopular parent advocate with the State, I'm highly educated, I know the legal system well - I have a lot going for me that makes me an intimidating presence for the State and they strongly dislike that.  I'm not an easy push over and I know rules and regulations and limits all too well.  And Noah has paid the price as they continue to send me a strong message that they will continue to reverse every favorable appellate Judge ruling in Noah's favor.  It still feels so unreal that they have that legal capability.   How on earth can Medicaid override a Judge's ruling - but they can.  And no one seems to want to change legislation to block them from doing so. 

So this means that Noah goes without the simplest of his needs even down to a $50 therapy ball that was recommended by his treating therapist to the highest of a wheelchair that fits him correctly.   So I'm in a very unique category of completely alone in this.  And no amount of fighting will allow me to win at it.  It's designed and set up for Medicaid to be victorious no matter what.   It's such an incredibly helpless feeling.  We are now living with the Internet and a social-media-obsessed culture, which further adds to those isolating feelings of being disconnected.  People have given themselves permission to be distant because they can now watch you from the sidelines with ease without being an active participant in your life.  I always compare it to a car crash, where you slow down to see it but no one gets out to help.  You hope in your mind there were no casualties, but lack wanting to get involved to see if you could have resuscitated the injured.

Special needs parents never get to unpack their worries, we never get a reprieve from hundreds of emails and phone calls and mail that pour in weekly related to our child's extensive needs - which are usually problematic at best.  We have no one to hear us that is present and that kind of social media expression is met with comments like "suck it up,"  "aren't you over it yet,"  "you're whining,"  "all you do is complain" - which are of course responses to make others feel better about their absence in the set of circumstances, but further adds to the heaviness that you carry in your heart. 

“Certain voices hold this odd pull on our heartstrings. They are like sad oboes or something, something that makes you want to throw all your money at the radio while yelling, "I love you."  But what happens to those of us who have lost our voice?

Love,


Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.

Division Is Not Acceptance

In December we were invited to an Christmas event.  I was overly excited.  I planned cute formal outfits for both boys.  I anticipated and was dreaming about the expressions on their faces; joy, happiness and the awe of childhood Christmas all wrapped up as if it were a perfect gift with a sweet little bow.  The morning of the event however we were notified that the event center was no longer going to allow families with children in wheelchairs to sit all together.  We'd have to be split up.  Noah would only be allowed one caregiver to sit with him in ADA seating - the rest of his family and respite attendant would have to be seated elsewhere.   I was really in shock that an event center could think that was acceptable.  Typical families are not divided and all sit together.  Why not families who have a child in a wheelchair?  A family is a family. 

We inevitably wound up having to decline the invitation as much as it hurt for me to do that.  Noah is a all hands on deck kind of kid and more hands the better when it comes to an unexpected crisis or sensory processing episode.  Splitting up isn't an option for us.  Not to mention I would never be able to see the joy in Noah's face or hear the laughter in his voice, or his expressions or be present in that moment with him.  I would be cheated out of all of that leaving him behind to sit with only his dad while I am divided from them, not to mention risking his safety if only one person was with him.  I marinated in sadness and regret and the realization that this world wants to make very little efforts in including us in the ways we need to be included. 

Today is the International Day of Acceptance (January 20th).  The goal to embrace diversity, educate your community, and empower each other.  It's so hard to embrace diversity.  It's an uphill battle every single day.  Being different isn't good.  Being different gets you separated as a family.  Educating your community?  Doubtful.  In the minds of others they think they are doing an excellent job of being mindful of ADA rights, and they pat themselves on the back for supporting certain members of the community - perhaps those with disabilities and illnesses that don't require the use of a wheelchair - yet we're still not all on equal footing.  Certain conditions or diagnoses are more favored in the community than others.  In a world that penalizes you if you have a child in a wheelchair - a community that makes you feel "less than."

I thought perhaps this was a fluke.  That perhaps one venue had incredibly unfair rules and expectations for wheelchair families.  But that appears not to be the case.  Families report to me that this is happening universally with movie theaters, sporting events, concert venues, and performing arts.  That across the board event centers are hiding behind this excuse they don't have enough wheelchair seating to allow families to sit together - when really it should be like any other event.  When seating is sold out it's sold out, rather than making the policy to split up families.   Division is not Acceptance.  

Acceptance is the recognition that families are deserving of staying and being together just like typical families.   Making a policy that prohibits an entire family from sitting together is unconscionable.  So, today on the Day of International Acceptance ask yourself this question:  What are you really doing to make sure that you are fully accepting and embracing the disability community and their family as a whole?  

Love, 

Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.

An Ocean of Dreams: SeaWorld San Antonio

Because of Noah's tremendous physical challenges he requires extra attention and care.  Sometimes that is a really hard thing to balance the unique needs of each child.  I often feel like I'm living in two different worlds; a special needs world and a typical world.  Caught between the best of both beautiful worlds.  Luke, however at his tender age often feels a bit jealous to the attention that Noah often receives throughout the day, and he craves sometimes just a cuddle when I'm spoon feeding his older brother.  The guilt is real and it's big.  Because you're trying to split yourself into two halves to accommodate and balance the needs of both children.

When Brave Young Hearts set up Noah's adventure trip, we never expected that they'd gift Luke with his own special day as well to SeaWorld.  Luke has had a rather strong love for ocean life - and in particular Orca Whales.  The child eats, sleeps and breathes anything orca whale related.  So SeaWorld was a really big deal to Luke and the entire family.  Brave Young Hearts even coordinated a Dine with Shamu event for us and even went out of their way to contact the chef directly to coordinate arrangements to have a meal pureed for Noah at the park. 

To watch the light in Luke's eyes as soon as he hit the parking lot made me teary - because I knew he was experiencing his own dreams.  In a way your dreams have to die when you have a child with special needs but you never want those dreams to die for either of your children.  Their happiness regardless of the challenging circumstances continue to be on the foremost of your mind and heart.  I never want Luke to feel cheated by the family dynamic that he was born into or to feel secondary to what is happening around him.

Luke very well could live at SeaWorld.  He was so at home there.  A place that speaks his language.  Dining with Shamu was the most amazing experience.  The trainers were so hands-on and it was such an up-close and personal experience.  They talked with Noah (knowing he couldn't talk back and Noah spoke the best he could with his laughs, squeals and bright blue eyes).  And Luke was so super quiet.  He just listened and absorbed it all like a sponge.  The chef pureed a dish of mac and cheese and chicken for Noah and they went out of their way to have a slice of cheesecake on hand just for him.  I cannot tell you how overwhelming it is to have strangers go out of their way to help you and make accommodations and fulfill usual requests so that you can be included like the rest of the world.  Brave Young Hearts made it all so perfect.  Every detail, every little single magical moment.  They looked out for us in all the ways that I wish the everyone would.

The trainers must have felt our tremendous awe of the experience and quietly invited us down to the tank for a private meet and greet with the Orca Whales.  It was a surreal moment to be that close to them.  Only glass separate you from them.  Their eyes spoke volumes of understanding and tenderness.  One of the largest species on earth dubbed a killer whale - yet they felt so majestic and loving in that moment.  We were able to get some pictures up against the tank with three of them - the mother and two of her babies.  A big thank you to Doug, the trainer at SeaWorld (While I know this blog is far from timely) I hope you find your way back to Noah's blog to know how much you gifted both of my boys that day.  And you deserve such mention for your kindness that day.  I won't forget you.  I never forget anyone that touches our journey in such a special way.  Thank you for all the memories and the smiles that we'll treasure a lifetime.

SeaWorld is rather big, and we must have walked it three or four times that day back and forth between events and exhibits.  We were unable to see the dolphin exhibit that day.  It was closed for weekend maintenance, but we were able to see a couple of them swimming out in the open which was still neat.  Noah loved all the shows, he beamed with laughter and smiles.  Luke was in his element - so much so that we worry that Luke is going to grow up and find a place to live near the ocean...  he's very passionate about sea life.

"You can't cross the sea merely by standing and staring at the water. The sea, once it casts its spell, holds one in its net of wonder forever."

Love,




Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.

Morgan's Inspiration Island Water Park: A Special Needs Utopia

Morgan's Inspiration Island is the world's very first fully accessible water park had it's grand opening this year on June 17th.  Never in my wildest dreams did I ever think that Noah would be blessed with the opportunity to visit it, much less on opening season.  We learned of a local organization who grants children adventure trips through Noah's participation with HopeKids called Brave Young Hearts.  I sat on the idea for weeks before applying and delayed a couple weeks more, before actually submitting the required application for consideration.  I think I've grown too accustomed to bad news and the word no, and continual rejection in any form is painful.   But Papa Bear, one of the board of directors of Brave Young Hearts, was persistent and kept encouraging me to apply regardless of the all the reasons I could think of that Noah would likely be rejected.   A long shot I thought - Noah's wish to travel out of state to San Antonio, Texas to experience for the first time in his life a water park that was designed to be fully accessible for children just like him.

And to our complete surprise and extreme delight Noah was chosen for an adventure trip.  I think I had re-read the email about six or seven times before I really could believe it. Then I said don't get your hopes up because what if there are strings attached like you've got to pay airline fees, or hotel room or provide for things like our own food allowance or rental car - none of which we could do.  Yet, Brave Young Hearts set all our concerns at ease immediately taking care of every single detail of Noah's trip from big to small.   We were in just awe of this incredible and unexpected blessing to come Noah's way.

The timing was divine in it's own way.  It's been a hard year, financially, emotionally and medically as we've fought our way through a lot this year.  I would be lying if I said it didn't take it's toll on the entire family in some way.  Our reserves were low.  Nothing about our lives feels remotely normal.  And here Noah was given a chance to experience being normal - in a world designed around his needs and not the other way around.

Noah's trip was planned for the very last weekend the water park was open for the season. And we counted down the days as if we were waiting on Christmas.  Luke even more excited as Brave Young Hearts is such an incredibly loving organization that they went out of their way to include Noah's little brother Luke in this adventure trip and blessed Luke with a day at SeaWorld.  Which is huge in Luke's world.  Since around the age of three, Luke has had a rather unique obsession with ocean life - an in particular orca whales.  Brave Young Hearts coordinated lunch with Shamu and a day at the park.  A dream come true for both children - a parent's dream to see both of their children incredibly happy at the same time.

We hopped a plane (after TSA issues that are always present when we fly with Noah), said a little prayer that his wheelchair would survive the trip, and a leap of faith that all would be beyond incredible once we landed in Texas.  Our first night was a little rocky.  Noah always gags and vomits on take offs and landings, however he vomited a bit more than usual on this trip.  No one really knows why.  Noah's severe sensory processing disorder can be very unpredictable at times.  He never fully recovered from his SPD episode on the plane and wound up gagging and throwing up into the late hours in Texas, going though the only 2 sheets I packed for his special needs travel bed, three showers and 2 pajamas later.   We weren't concerned with Noah being sick - we knew this was sensory related, but nonetheless overwhelming for him and for us.  Chris and I starred at each other dazed and tired both hoping that Noah would rebound to normal to enjoy Morgan's Inspiration Island the next day.

We had a late start - sleeping in until 9:30am and missing breakfast.  But we got our engines running and Noah was full of smiles by the next morning.  He had settled into a level of comfort and was ready to explore the day and we were relieved that his SPD episode seamed to be over.   We hopped into the rental van (which was perfect for Noah's needs and felt like this travel security blanket while we were away from home), and headed out for a day of fun at Morgan's Wonderland and Morgan's Inspiration Island. 

We were drawn to the accessible ferris wheel.  I've never seen anything like it before anywhere.  Little bell shaped cabins with an accessible option to tie down Noah's wheelchair so he could enjoy the ride.  It was really windy so the cabin bells swayed quite a bit which can cause a bit of motion sickness... although Noah seemed to breeze through that more than the rest of the family did.  But he enjoys motion in a different way than the rest of us do.  It was neat to be able to do that with Noah - something that we can't do anywhere else in the world.  We rode the accessible go carts, played at a bit at the sensory village before we headed over to Inspiration Island which opened an hour later than the rest of the park.  

When you walk into Inspiration Island you are greeted with an attendant that assists you with your water park needs.  For Noah that meant he needed to be fitted with a waterproof wheelchair for the park.  Our attendant was Louisa and she was exceptional.  She looked over Noah and immediately knew his needs and what he would need for positioning and what size wheelchair he would need.  Let me tell you all that Noah's DME (Durable Medical Equipment Provider) still can't do this.  And Louisa - bless her heart - is simply amazing.  She is gifted and she cares.  She does her job so well.  Too well as I wanted to pack her up and bring her home.  The girl knows her equipment and what children like Noah need. 

Within minutes she had picked out the right sized Convaid Waterproof wheelchair for Noah, fitted him with beaded head support and the right sized harness.  She also knew that Noah would need hip positioning and had a small wedge pillow but then went even further as she didn't want him sticking to the plastic so she lined it with a piece of neoprene fabric.  She had covered every single important detail.  Louisa was pure gold. 

The changing stations are magnificent.  There are several of them with large barn doors, with enough room to accommodate an entire family with all the changing table accommodations one could ever dream and hope for.  Some rooms had ceiling lifts, some had fixed tables, some had power tables that lowered and raised.  If you had an ADA need it was all there.  They even have air powered waterproof power wheelchairs - and those are so cool.  I mean super cool.  Whoever dreamed that up deserves a high five and a fist bump.

We hadn't had lunch so decided to have lunch at the park.  There are actually two restaurants at Inspiration Island but only one was open since it was the closing weekend for the park.  They had a great variety to chose from, typical amusement park food, but fun for the entire family.  The benches were all accessible and in the shade.  After we had a bite to eat it was then time to get our feet wet - literally. 

 

Noah had never seen a water park before, and never had been splashed by water or or near fountains in his life.  So it was a completely new experience for him.  The first time he felt the water from a small fountain he laughed and instantly understood water equals fun.   Happy squeals and infectious laughter followed and my heart just swelled.  Thank goodness it was a water park because my eyes swelled with happy tears (and certainly I didn't want the rest of the world to notice).  These are the kinds of experiences everyone dreams about when you have a child like Noah.  A parent like me literally lives for our child's happiness.  Noah is forced to enjoy the world around him differently because of his physical limitations but at Inspiration Island nothing is out of reach for him.  Nothing.  He can do every single activity there with ease.

We decided to do the water ride before the remainder of the water park.  The water ride is so cool.  It is fully accessible too with a hydraulic ride that raises and lowers Noah's wheelchair so he can ride in the back with us in the front as the lazy river ride passes by fun animals, music and sound.  It was relaxing and wonderful and Noah loved it.  We only rode it once due to time, and I wish we had been able to ride it several more times.  I really loved it. 

Most of the water park is not heated.  Only one attraction of the park is heated.  But, we did all the non-heated areas first and the water was comfortable - likely due to the hot temperatures in San Antonio.  But the entire family was comfortable with the water temperature.  We splashed, we played we ran around.  Luke got attached to a very small water slide and playfully engaged with other little kids just like him.   Everything you could ever wish for is at Inspiration Island - comfortable cabanas, an abundance of lawn chairs, multiple accessible bathrooms, incredible changing rooms, waterproof wheelchairs both manual and power - loving attendants, great food - loads of smiles from all families there.  It's like special needs utopia.   There is not a single thing that they could have done any better. 

I wish so badly that we could find a way to give this experience to Noah yearly.  It is something I really think that children like Noah really need in their lives.  It is such a magical place and children like him are so deserving of this happiness.  They have to go through so much - too much.  And we all should strive for this pure joy that exists at Morgan's.  I wish a place like Morgan's existed in every state.  It's so needed.  Morgan's is a living dream.  We stayed until they closed which was 4pm.  We didn't want to leave.  We spent the last few minutes at the heated section of the park.  Oddly enough Noah couldn't get his body to go from non-heated to heated.  You would think it would be the other way around.  But since we experienced the heated park last his body actually shivered in the heated section.  We've always known that Noah can't regulate body temperature but it was curious to us that his body actually shivered in the warm water and no where else - almost as if his body was confused going from non-heated to heated.  The opposite of how the rest of us would react.  We decided it was probably best to bundle him up and dry him off although he certainly didn't want to leave and started to give us the pouty lip.  Which of course breaks your heart every time knowing that his fun has come to an end and that I can't bring him back the next day, or next week or even likely next year no matter how hard I wish for it. 

Brave Young Hearts provided Noah with such an incredible blessing and we are so grateful for the love and kindness that they gave not just to Noah but the entire family.  Out of a place of great pain with the loss of their own child, they are providing so many beautiful memories and experiences to others so that they joy they are missing can live on for others. There are sometimes not enough words to ever express a proper thank you for the magnitude of it all.

Morgan's Inspiration Island is a place you must visit.  You won't be disappointed.  It is pure perfection. 

Love,

Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.

The Tiny Terrorist: How TSA Keeps You Protected Against Wheelchair Bound Children

Last week traveled for Noah's adventure trip sponsored by a local organization called Brave Young Hearts.  Noah's adventure was to Morgan's Island Adventure Water Park in San Antonio, Texas.  Noah was also gifted with a day at Seaworld with his little brother Luke.  The first hurdle of course - and the one we most dread when traveling with Noah was the airport.   This time we decided to take our own vehicle and leave it in the airport parking garage.  That turned out to be an excellent decision and way more convenient than attempting to wait on an accessible taxi or get Super Shuttle to coordinate a ride.  We were waiting sometimes hours for a ride home - even after scheduling and pre-paying for ride service when we travel.  And although the price tag was $96, it still was less than half of what we normally have to pay not including tip to coordinate an accessible ride to and from the airport.

Yet, even with the convenience of parking on site, we knew it would still be a challenge with the number of bags it takes to travel with and getting through TSA.  We did certainly underestimate the hassle of TSA this time.  We measured it up against past experiences which were certainly problematic at times, but we still weren't prepared for for what was in store for us on this trip.  I call TSA Cares religiously when we travel, and give them the same speech each time; medically fragile child, traveling with medically necessary needs like liquids and pureed foods and often medications, has spastic quadriplegia cerebral palsy, cannot be transferred out of his wheelchair at TSA check points, etc.  I even get an a TSA attendant call upon arrival and departure confirming my contact with TSA Cares and their acknowledgement of our travel plans.

We have now flown with Noah a total of twelve times.  Each time we travel we always have a unique set of challenges and obstacles.  Sometimes it's the rental car agency who failed to realize we were serious when we said we really need a wheelchair ramp accessible vehicle and no a regular van doesn't work to tie down his wheelchair.  Sometimes our hotel room isn't accessible, sometimes we forgot something Noah needed at home and we're shopping immediately for it when we land, and sometimes it comes in the form of being bullied by TSA. 

Two flights ago TSA demanded Noah be removed and separated from his wheelchair.  I was threatened with arrest if I failed to comply.  They took Noah's three ounce apple juice away from him that he was drinking in order to settle and minimize his sensory gag and vomit reflex.  Once removed, Noah immediately vomited all over me and himself.  An older  gentleman behind us was also removed from his wheelchair and TSA refused to give it back to him despite desperate pleas from his family. TSA refused to check him until they were finished with Noah and the detained him for an hour.  With no real reason to do so other than they could.  I went to change a vomit soaked Noah while he was still in his wheelchair, his daddy briefly running to the restroom to wash his vomit soaked hands.  Chris comes out of the bathroom and asks where Luke is and I say holding onto the back of the wheelchair.  Except I look up and he isn't.  I scream Luke's name.  And nothing.  We're frantic not knowing where he went.  Within seconds Luke calmly marches out of the women's bathroom saying he had to go pee.  And I'm like is this really my life? As I'm trying so hard to care for one child and nearly lose the other at an airport.

I of course came home, immediately filed a complaint, video recordings of Noah's TSA check were reviewed and we were issued a written formal apology with the "well do better next time" verbiage.  Basically an acknowledgement of they did wrong but didn't care much about that fact. 

Although we've had some bad experiences with TSA I still wasn't prepared for what happened on this trip.  Per usual, Chris and I removed our shoes as required by those under the age of 18.  Noah does not travel with shoes, Luke kept his on.  All of our baggage was screened including Noah's medical bag which is clearly marked "medical."  It contains his food pouches - typically six of them to get us by until I can get to the ones that I bag check, 2 apple juice boxes, his medical cup, plastic spoons, topical medications, Motionease, diapers, wipes, and facial towels, antibacterial wipes and gels, and a vomit bag kits.  The other bag carries Noah's Ipad, the camera, my driver's license, keys, antibacterial, changes of clothes for Noah as he soils them quickly and requires multiple changes when traveling, 2 chux, and charging cables or the cell phones.  Luke had a carry on bag with nothing but his clothing.  Everything else was checked baggage. 

TSA always gets edgy as they immediately try to separate Noah from me at the scanner.  I tell them I have to go through the scanner first and then Chris will push the wheelchair through so that one parent is always with him.  They start to always get confrontational with me because I refuse to be separated from Noah even briefly.  Noah is so involved that it only takes a second for him to aspirate if you don't know how to handle the situation.  I'm ushered over to a place where they swab down and pat down every piece of Noah's wheelchair, which makes him uneasy as he can't handle strangers too close to him.  I warn them he'll throw up if they don't give him space.  They swab his hands both of which I have to lift up for them because he cannot voluntarily raise his arms.  This time Noah tests positive for explosives.  This is the fourth time he has tested positive for explosives in all the times we have flown.  All other times Noah 's pat down of his wheelchair suffices and we're let through. 

However, this time a supervisor determines that because Noah tested positive for explosives that it is mandatory that I undergo a full body search since I was the last parent to touch his wheelchair.  Only Noah's hand tested positive not the wheelchair.  I'm given no other alternative.  I am asked if I'd like a private room for what they are re going to do and I decline as they tell me it would require me being separated from Noah and the rest of my family.  I'm ordered to spread my legs and hold out my arms.  I'm instructed to lift my shirt and allow the TSA agent to go underneath and between both breasts twice.  Two hands run the length of the insides of both legs, while an open hand rested on my inside of my crotch and wasn't at all brief.  Part of me is in disbelief this is happening all because I have a child in a wheelchair, I feel numb, helpless and slightly embarrassed that I'm being required and subjected to this invasive search. The TSA agent is unsatisfied and asks me to unbutton my pants and pull them down hip level exposing the top portion of my panties and then combs through my hair, then my neck and down my back, I feel two thumbs down the center of my bottom spreading both sides apart, with hands moving down the front of my underwear while the TSA agent checks  me once more from head to toe as I'm ordered to spread my legs wider and keep my palms facing upwards.  It wasn't so much the modesty part that was difficult, but the awkwardness and uncomfortability of having to consent to having a stranger touch you in this vulnerable way.  We are forced to give up our basic freedoms and being forced to subject to this process.  I can tell you that what happened to me was far beyond a basic search that I was intentionally touched in a way that I shouldn't have been all disguised in the name of "security."

My full body search isn't enough to satisfy TSA, however.  They then indicate that Noah testing positive for explosives would then further require a separate swab of everything in our bags.  Everything was dumped out in trays.  The camera was removed from it's case, Noah's sterilized medical cups and spoons each dumped out voiding them from being sanitary, clean and ready for use, Noah's baby food pouches were opened and tested making them unusable. IPads separated and given to different TSA agents.  All of our belongings spread out to no less than seven agents while we stand there stunned.  Noah's car seat was tested for explosives not once but twice even though the first set of swabs did not come up positive.  Luke looking on for reassurance that everything was going to be okay as he sensed our distress.  Noah's gagging growing stronger indicating he couldn't hold off his vomiting much longer.   We're finally released and cleared 48 minutes later.  Other passengers looking on at us throughout the ordeal as they went through their own TSA checks I'm sure wondering what all the fuss was about and why so many agents were devoting so much effort to this tiny terrorist in a wheelchair and harassing his family. 

TSA still unsatisfied requires an escort attendant to our gate, as if we are still guilty of an offense.  We make it to pre-boarding ontime.  I am still stunned and struggling to absorb what I just endured.  I just want the TSA agent to go away.  He asks if I had any feedback for their services.  I think my response was "are you kidding me?"  I lacked the words, they were there hot and heavy under my tongue but my voice squished out of me like a child who had been punished and sent to sit in a corner in silence.  I didn't think I could have a conversation without breaking down in frustrated tears.   The TSA agent was extremely young and sensed the anger and sadness in my body language and retreated. 

I called my mom, the only person on this earth that knows me well enough to feel my troubles in my voice.  It's comforting to talk to her about it before I quickly board the plane and she understands that I'd do anything for Noah - even subject myself to a full body search in public.

I tried to put it out of my mind the entire flight, but my mind just kept dwelling on it - as if I could somehow have changed it or influenced that outcome what occurred.  I was heated because I felt the process of TSA to be so incredibly unfair.  A real terrorist has a better chance of getting past TSA than a child in a wheelchair does.  Only certain individuals have to remove shoes.  One can even pay $85 per person for a five year "pass" or what is referred to as a TSA PreCheck, to get around having to take your shoes off, remove your laptop or be subjected to a liquids check.  That seems like a small price to pay for a real terrorist to get around any invasive TSA check - heck there is no swabbing even necessary of your hands for an able bodied person.  But Noah who can't even hold an object in his hands, who can't sit, walk, talk, crawl or self feed could be a danger to those flying and TSA thinks that you need to be protected against families like ours.

I put it out of my mind the best I could for the remainder of the trip, I didn't want it to overshadow the incredible fun and joy that we all were gifted with experiencing.  I had to build memories with my children because at the end of it, that's all we'll have left and can take with us in this life.   I thought perhaps we had been through the worst of it.  But that wasn't the case.

Upon getting ready to come home Noah's hands were once again swabbed.  He did not test positive this time for explosives.  His wheelchair was also swabbed and patted down twice, it also came up negative for explosives.  Chris gets pulled aside and told that Noah's pureed baby food is flagged and that if we want to be able to take it the plane with us even though it is medically required that I have to be subjected to another full body search.  Chris sees the tears well up in my eyes and gruffly says no to the attendant and says if there is a full body check required then they'll have to do it to him.  I feel a sense of relief, but just as sad for Chris as I was for myself.   I tell the TSA agent that we've never had to do full body searches because of Noah's food before or because he's tested positive for explosives in the past, and her response was short and curt and said these have always been the rules even though I know that isn't the case. And my suspicions were correct as I came home to read an article about TSA's new invasive full body searches.

Chris's crotch was simply grazed and a full open and resting hand wasn't required as it was for me.  They are quicker and less through with him.  They seem uninterested and slightly less interested in him since he volunteered and demanded to take my place.  Chris stoically handles the situation and makes eye contact with me to reassure me that we'll get through all of this together - Noah's team.  You can't break us no matter what you put us through.

I think the worst of it is over.  I'm relieved and anxious to get as far away from TSA that I can.  The plane was running ten minutes late and still unboarding previous passengers from another flight when we got to the gate.  A heavy-set lady in a wheelchair waits as if she's stalking the gate for first signs of boarding.  The Southwest gate attendants look to us as they recognize our needs deserve first priority and attention.  We're allowed to board first as we always are, so that we can install Noah's special needs car seat and then transfer him from the wheelchair onto the plane.  While we try to do it quickly it does take us a few minutes.  The plane isn't full.  40 seats exactly remained unassigned and empty on the flight.  Noah has to sit against the window per regulations with his car seat, his dad next to him.  The medical bag next to Chris.  Luke and I are a row across leaving the end seat isle open on both sides of us. 

The lady in the wheelchair follows behind us and is visibly angry.  She blurts loudly out of her mouth "well I guess I'm screwed with not getting a front row seat."  She then briefly pauses and looks over at Noah and proceeds to say ""oh it's because we have a retard on the plane." Do to her size she requires two seats and there is only one on each side of us.

I wish I could tell you that each time someone says something like this that I could be rock solid like stone.  But, I'm not.  I wound easily even though I hide it.  Her words feel like a dozen swords hitting my chest.  I well up with tears out of a combination of all the feelings I'm experiencing.  While the anger rises to a place where I want to tell her just how incredible that miracle child is that just boarded the plane, I can tell by her demeanor and loud and obnoxious behavior that me uttering even one word to her would have caused a massive argument and fight that would have likely gotten one or both of us kicked off that plane.  I sit down in silence.  Stewing in pain and holding it all in.  I focus on how pretty the night flight is and all the lights below us as we fly.  I kept thinking and wishing and quietly asking God for just an ounce of comfort to get me through it.  I contemplated in my head giving this lady a piece of my mind when we landed.  I may have even followed through except we were rushed rather quickly off the plane since the Southwest plane before us had a brace for impact landing crisis and emergency vehicles were everywhere around us.  I just wanted to get Noah off the plane and my focus quickly shifted from that verbally uttered sentence of cruelty onto Noah's well-being and cleaning him from the vomit that always happens upon landing.

We were on the ground and home and we had endured and overcome the hard parts.  That's really what we have to focus on is that we don't let the hard times overshadow all the good, incredible and beautiful moments.

For all of you special needs families that have been faced with similar TSA experiences or sadly will have to undergo something like this in the future all because you have a child in a wheelchair who is medically fragile, my heart goes out to you.  I understand.  And I know how unfair this all is.  I wish I could change it for me and for you.  I dream of things being easier for us, I wish that having a child with special needs didn't always feel like there were consequences attached to it.   I only see TSA's practices getting worse, and all the parents who reached out to me when I shared my most recent experience - I'm just so sorry.  This is so wrong and my heart aches for all of us.

Love,



Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.