The Unapologetic Tully

August always seems to be transitional.  Yearning for the last sounds of the locust before the leaves fully fall to the ground and as you for wait for the summer season to be put to sleep.  Coming off the heals of a very painful and emotional August - very much a season in my own life, I took solace in a Netflix movie; Tully, a story about a struggling mother.   

It only took minutes for me to wrap my arms and heart around the main character Marlo.  You meet her with two children and expecting a third.  From the beginning it isn't about this glorious life wrapped up in a perfect motherly bow.  You know the kind of illusion we all paint to make people think that life is blissful and unblemished with hardships.  It is obvious from the opening scene that her child Jonah has special needs, as she strokes him gently with a sensory brushing technique.  It was an instant connection for me.  I already understood where we were going from the very beginning - a journey much like my own, perhaps just on a slightly different level.

I absorbed myself into her feelings, almost as if I could have written it or lived it.  I think in a variation of it, I am still living pieces of Tully's story and perhaps I always will be.  The mistake is the belief that this is a story about postpartum depression, it's simply not. 

While Marlo did admittedly experience that with her second born Jonah, her third birth isn't really the cause of her struggle.

It's rather a story of versions of yourself and feeling lost in what once was or what no longer is.  There are "before" and "after" periods.  Sometimes there are many "before" and "after" periods of your life.  Not just one defining moment that separates the two but a collection of many.  You still look back while trying to move forward.  Trying to navigate where you came from and where you are going.  It's not easy.  Especially when the road ahead is much harder then what was behind you.  Your carefree existence, lack of worry, minimal problems and then one day you realize you traded it for sleepless nights, constant tears, challenges beyond anything you could ever imagine, a host of problems and obstacles.  And in the middle of the multitude of life's hard curve balls of your current life you still know deep down you are blessed; but even in that knowledge it does not lesson those overwhelming feelings.  You still ache for thoughts of where you came from, what could have been or should have been, or what you think you wish you could change.

The premise of Tully is well crafted.  Marlo has a wealthy brother and perfectionist Sister-In-Law that offers to hire and pay for a night nanny to assist her through the night with a new baby as a baby shower gift of sorts.  It's blatantly apparent that Marlo feels like she can't quite measure up or relate to her Brother's wife's ideals or lifestyle and is hesitant of feeling like she needs to accept that kind of night time help.  She's resistant to the idea, as most supermoms would be.  The idea that we can't be all things to everyone or do all things somehow seems like admitted defeat.  The movie script however leads us to believe that Marlo does indeed accept this generous offer and hires the night nanny, who's name is Tully.

Tully, this beautiful lifesaving friend that quickly becomes Marlo's hero diving into rescue her emotionally, physically, spiritually and soulfully.  Tully steps in to fill all the missing gaps; making perfect cupcakes because Marlo lacks the energy to be that perfect mom who makes goodies for school events, cleaning her home when she's too exhausted in the middle of the night; taking care of things that Marlo lacks the energy and time to do.  Tully rescues her from sleepless nights with a new baby, she nurtures the broken soul, feeds her understanding and compassion without judgment and truly understands that "You can't fix the parts without treating the whole." And that is exactly what Tully strives to do.  Treats all the broken parts as a whole.   Tully is carefree and free-spirited, young in her 26 years somehow she feels like a reminder of what Marlo has forgotten. 

Marlo struggles with coming to grips with the challenges of her life.  A child with a severe sensory processing order is no joke.  Her son Jonah keeps getting defined as "quirkie" without any real diagnosis, but it's clear that he has unique needs that are not being met or addressed by his school, and that Marlo is completely unsupported as a parent by those in her community as the school principle informs her that she needs to find a PARA aid for her disruptive child in order to keep him enrolled in school - one of which she is fully financially responsible for funding and providing to accompany her son at a school all day.  This leads to an eventual explosion of Marlo's feelings when the principal dismisses her child from school, with Marlo shouting at the top of her lungs that the world views her child as "retarded." 

In that moment I just cried so hard.  Because I can't tell you how often I have felt that way.  That people look at Noah as nothing more than a word.  A sad parent who drew the short stick in life with a child that is "damaged" and "disrupted." We carry these labels.  We all do.  And my label?  The struggling mom.  I am that mom.  Whether you want to look away and pretend that I'm not.  I am.  Sure I can present this picture perfect have the world by the tail and everything is under control and managed persona just like Marlo.  I can do tap dances with the best of the best.  But underneath it all, I am aching for a Tully.  That hero that will step in and fill the voids. And provide all the answers for all the really shitty parts that life has to offer.

While many claim that this is a movie about mental illness I don't see it that way.  While it is presented in a way that may imply Marlo has lost touch with reality she hasn't.  She recognizes who Tully is, she knows that.  Tully's character was merely a cinematic presentation of her "before."  Not someone that she truly believes existed in present time. But we're led to believe that is the case because the movie needs us to in order to fully understand the meaning and appreciate what Tully truly represents.  What if your younger self could be the one to rescue you?

Marlo lacks a support system, she's truly doing it solo.  And while she has a great husband he's oblivious to the extend of her needs and challenges.  He's absorbed in work and in his spare time indulgences in video games.  Leaving Marlo to feel undesired, overworked, and like maintaining the household and the kids are on her shoulders.  Her husband Drew, however isn't to be hated or disliked.  He genuinely does care about Marlo and his family, he just never fully seen or understood the level of Marlo's struggle or her needs primarily because Marlo did a good job of trying to camouflage what was going on and project that she had everything covered and needed no help. Marlo wasn't the type of woman to raise the white flag and surrender.  So she invented Tully.  A further fabrication in order to convince her husband she was getting the night support she needed to continue to be a superhero to her husband, children and community during the day.

Marlo is in this state of questioning of how she got to this moment in her life.  And from Tully's perspective she's like cool, I have this life and maybe it's hard but it's incredibly beautiful. She is enamored with what the future holds, while Marlo feels a sense of being forlorn and lost.  How the two merge into a life's understanding which is really an expression of profound understanding. Never once is Tully's position one of disappointment for how her life is destined to turn out.  She's kinda like cool... hey it's messy and complicated but I'm okay that it turns out that way.  Can you imagine if our younger self gave us such forgiveness and grace and complete non-judgment for how the ending of our lives turns out?  And never placed blame that things turned out like they did. 

I remember reading comments on some of these mommy boards on social media when this movie first came out.  Most moms oddly very critical of the movie.  They wanted a happy ending and felt it wasn't.  One commented:  "Movies are to entertain, enlighten and inspire. While we may not have ultimate healing in a particular season in our life, we need to know that it is achievable. We don’t go to movies to see complete road blocks."

Maybe that's true, maybe primarily people go to movies so they can get caught up in glamorous dramas or movies where it's all rainbows and unicorns at the end or a fantasy that will never exist. But what if we lost ourselves in something more real.  What if we allowed ourselves to empathize and relate to a character in such a profound way.  I think Tully was so impactful for me because I feel it's very rare that someone can identify with my life.  And Tully felt like we mutually could identify with each other.  Trying to come to terms with the "before" me and "after" me of any particular period or time in your life.  

I know there are lots of Marlo's out there, I see them in special needs groups all the time.  I recognize their cries for help.  I understand their pain.  I feel it. I live it.  I know it.  And the world too often turns a blind eye to all of us.  They look away if they detect anything that to them would require them to participate in someone else's life in any real meaningful way.  Which makes self-care even more critically important.  Sometimes when no one is there you have to be your own hero even if it just means that you rescued yourself in a hot shower for 20 minutes so you had the strength to keep going on the rest of the day.

The movie ends like it begins.   With Marlo working on her son's sensory challenges and working on a brushing technique with him.  Her own journey and her incredible love for her children who now are a big part of her "after." It's not that Marlo's "after" is eternally sad, we should not look down upon but rather admire her journey for she's found ways to move forward. 

I think Tully is a must watch. If you haven't seen it, take it upon yourself to add it to your Netflix fall line up.  Cuddle up in a chair with a hot cup of tea, with Kleenex in one hand and just absorb it for what it is.

Love,



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

Dear Special Needs Mom (On Mother's Day)

Dear Special Needs Mom,

Today I stood and watched you lower a ramp from your vehicle, and get down on all fours to unlatch safety belts from your child’s wheelchair. 
I noticed when one of the belts snapped your hand causing it to bleed.
You didn’t flinch, nor tend to your wound.

Without pause you continued on. You gently rocked the wheelchair into a safe position to take it down the ramp and out of the vehicle, mindful of your little one’s arms and legs. 

Raising the ramp with one hand and holding onto the wheelchair with the other.
You walked around to the other side of the car where I watched you unload the other half of your heart…your youngest child waiting patiently for you to free him from his seat.
You braced the wheelchair with your leg so it didn’t inadvertently roll into the street, while lifting your other child out of the vehicle. 
You reached for your purse, one grocery bag, and a bottle of hand sanitizer that you placed in your pocket.

Holding one hand of one child and pushing your other son’s wheelchair with the other, I caught you briefly recognizing your wound, and although I’m sure it was throbbing you carried on as if nothing had happened. 
For a moment your eyes caught mine.
My eyes holding back the tears that recognized so much of myself in you. 
For I too, am just like you.

Temporarily disguised as just a person on the street corner, my special needs life waiting for me at home. 

I wanted to approach you to say hello, but I could see your determination and focus and knew that I would only serve as a distraction from your shopping mission. 
I wondered what you were rushing into the store get; a carton of eggs, chocolate pudding for your children, and a specific brand of apple juice – the only one that your child with special needs would drink – knowing that your one small bag could only hold a handful of essential items.
I was walking to my car in awe of another strong mom, when I turned back into the store.

A flower display not far from the entrance with a handful delicate flowers -  daisy mix with pink carnations and a single rose caught my attention.
 

A bouquet card lay in the middle.  I made my purchase and quickly filled out the card:
“A Special Needs Mother’s Love is the fuel that enables a normal human being to do the impossible. 
Happy Mother’s Day,
Love a fellow Special Needs Mom”
I left the bouquet on the windshield of your car, hoping that it would bring you sunshine in a day that is often filled with a balance of difficulties and joy. 

Every now and again sometimes we just need someone to see us, to know we’re not invisible and we’re not walking the journey alone.

Love,

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

Special Needs Parenting: I don’t have time if you don't believe in Aliens and Unicorns

"A friend once said I was delusional and I almost fell off my unicorn."

As special needs parents have a profound understanding of reality.  We never underestimate the seriousness of our child's condition nor are we delusional or in denial about our child's condition or prognosis.  We can fully accept what lies before us and yet know with certainty that there is always the potential for continued recovery and improvement.   We are a community that often believes in the impossible.  Aliens and Unicorns?  Sure.  Why not?  In our world anything is possible. 

So why is it so hard for others to support our desires not to shut the door on the realm of possibilities?  

The main problem being is that many people want special needs parents to take "Hope" out of the equation.  They discourage us from considering "cures, miracles, recovery or improvement."   And if we stand our ground and shout from the rooftops how we believe in our child and know they are capable of accomplishing great things eyes roll as if we've just told them we've shook hands with an alien all the while riding on our glitter covered unicorn.   We are not crazy.  We are not just dreamers.  We are balancers of hope, faith and the knowledge that anything is possible. 

Dismal predictions are a dime a dozen.  It’s the theory that you should prepare yourself for the worst-case scenario at all times and if it turns out better than you are simply pleasantly surprised.   If we were to operate under the assumption that this was as good as things were going to get for our child with special needs, we could never be the effective cheerleaders that our children need us to be.  

There is a quote by Cherie Carter-Scott, that I feel defines the spirit of a special needs parent:

 “Ordinary people believe only in the possible.  Extraordinary people visualize not what is possible or probable, but rather what is impossible.  And by visualizing the impossible, they begin to see it as possible.”

By embracing what we are told is impossible for our children, we begin to see endless possibilities.  We do not see things how they are now on the special needs journey, but how they could be at some point down the road.  It’s okay he’s not walking by age two, because maybe he will at age, five  - seven – ten.  It’s never out of the question. 

We understand that no matter what the probabilities and odds may be of any accomplishments our children are capable of fulfilling in their lifetime, that there is the tiniest percentage of chance that things could be in our child’s favor then that is where our focus remains. 

Special needs parents find comfort in the fact that the unexpected can and does happen

If there is an 80 percent chance that our child may never be verbal or walk then it is equally 80 percent possible for it to occur.  If there is the slightest chance, then there is a possibility. 

If we do not believe that our children are capable of great things, then we will lack the ability to pick up on whatever it is that needs to be done in order to nudge its occurrence into tangible existence. Literally anything is possible – including aliens and unicorns. 

Love,

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

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.