Vacation thoughts from home

Will I  remember the way it feels to step from dry coolness in a small condo, out into a warm, humid, sunny walk way lined with mini palm trees and other tropical plants? To walk across the driveway with the squeek of my flip flops and the smell of my sunscreen? Will I forget the way I always tried to see as many geckos as I could, those cute little lizard guys who live all about the complex just scittering and scattering about?  When you come home from vacation in South Western Florida to the "north we know".. its almost like someone plucks you from a dream and drops you harshly back into a cold pool, where there are no palms, no geckos, no amazing vegetation and spectacular sunsets.

Will I remember being able to say, "I'm going to the pool" and just go over to it?"  The white powder sand on the beach, and the 88 degree water that envelopes you in a salty floating paradise under a blue sky, will they fade away into merely photos?  Probably.

What I will never forget is the look on Daniel's face as he is mesmerized by the plane taking off, by the feel of the Florida heat, by the warmth of the ocean, by the lights in the ceilings, by the soft waves coming in and out leaving so many gorgeous white shells.  And Daniel's face as John carries him into the pool, wraps a pool noodle around him, and just floats around.  That look of joy, comfort, freedom, relaxation, and love.  Secure in Dad's arms he lets his body float, kick, and splash.  He bares a farmers tan from his rash guard shirt, and sports a few bug bites on his toes from rogue biting flies that get us all. That face so simple and gentle soaking in the world with his eyes and noticing intricate details of a typical day that to him are amazing. 

Seeing him happy is the reason why we do it.  If it were not for family who love us, we wouldn't be able to witness that joyful face in a place so different and so stimulating.   It is just pure happiness in the moment.  Daniel is pure happiness and truth in the moment too.  The rest of us are all wrapped up in our complications.  Daniel is just enjoying life as it comes and presents new things for him to experience. 

It's simple and completely spectacular. 

The "Julie" episodes

I've been a special needs Mom for 16 years and 6 months.  Life has bound and tied me to a world of emotional intensity that I never really imagined, planned for, or even knew existed.  My son is a darling boy, he fills every single day with love and sweetness, his gentle eyes and joyful smile just let you know that he is OK.

But here's the "thing".  I am only human.  I also have two other "normal" children, Sarah and Thomas.  Both of my children have had wonderful academic records, been involved in everything from brownies, to dance, to theater, to orchestra, to jazz band, to baseball, football, soccer, basketball....    And as they age and grow I proud just like other parents.   The thing is, I have this incredible appreciation for the fact that kids have the ability to speak, walk, sing, dance, laugh, and just be wonderfully independent.  My biggest problem emotionally is the "thing" or whatever name it can be called when suddenly I feel this overwhelming sense of absolute sadness.  It happens quite randomly.  I can't control it.  It is as if it is a release of suppressed feelings in the midst of "trying to be like every other parent".  But I'm not.

On June 10, a Tuesday evening, my husband and I attended the Newtown High school Marching Band meeting for parents and students.  Thomas is ONLY going into 8th grade but he is allowed to participate.  He is so excited, of course, being the blossoming talented musician that he is.  And as I sat there, listening and watching the kids, so full of excitement just from being together, it brought back memories of my own Marching Band experiences when I was a kid.  John and I were thumbing through the parent manual, feeling completely overwhelmed, but wanting to support Thomas.  

And then, it happened.  The "thing".  Tears welled up in my eyes and my heart started to pound.  I can't stop the tears, so I have to let them pour.  I try to hide and slouch down, but my husband keeps whispering "whats wrong?  are you OK?"   I wave him away and say "just give me a second".  Because I am thinking of Daniel.  Daniel who will never march in a band, sing a song, play a cello, or write a story.  Being inside the high school auditorium infused me with the sounds and sights that reminded me of the 4 years we spent watching our daughter perform and develop as a beautiful young lady.  Graduate, and go off to college where she is now thriving.   Daniel WOULD have been a senior next year.  He WOULD have been planning his future, applying to colleges, taking his SAT's and learning how to drive.

I am of the opinion that it is OK for us to have these moments of sadness because they are as real as breathing.  There is a certain amount of permanent loss that perpetuates as time and its events just passes Daniel by.

By the end of the band meeting, I had shifted my brain right back to Thomas where it belonged and met some other parents.  These parents don't know about Daniel, most of them, so its nice to just be one of the crowd.  When I start showing up pushing the wheelchair, people treat me differently and the kids stare.  It's not a bad "different", but any mother of a special needs child who is in a chair, on a feeding tube, and makes crazy weird noises can attest to feeling "different".

Sometimes I have had these episodes at dance recitals, watching plays, hearing concerts.  I believe that it is because I have a wish deep inside my inner soul to know what Daniel would have enjoyed doing, and what Daniel would have sounded like if I have never acquired this virus that caused his brain not to form.  He started out just like any other baby, until the CMV virus entered my body and his and changed the course of our lives forever.

Yesterday was June 12, 2014.  One of Daniel's classmates, who he has been with since he was three years old, "graduated" from the school system.  She is 21 and can no longer attend.  The school had a lovely ceremony and reception for her, her name is Emily.  It was a beautiful moment, profoundly happy and sad at the same time.  The slide show pulled up picture after picture of a group of kids in wheelchairs, Daniel included, and over time the group began to diminish.  9 months ago we lost our beloved classmate Ryan when he passed away unexpectedly.  Emily graduated, and now there is only Daniel and Lindsay.
I wasn't expecting to cry as much as I did, but the reality of what Daniel's limited life really is shows up in those slide shows.

I must conclude with something that will change the depressing nature of this post.  The love in that graduation ceremony yesterday was something that you could feel in the air.  There were tears in every single eye, and Emily's Mom is one of the most incredible special needs Mom's I have ever met.  It was a beautiful testimony to what these kids teach us, and show us.  It was a special ceremony to joyously celebrate the life of a child who has survived and thrived despite so many odds.  And her brave and dedicated family who have dealt with so many challenges.  

(THIS VIDEO IS A COLLAGE OF DANIEL THROUGH THE YEARS)

I have to have these episodes, its just in my nature.  It's just who I am.  And I never claim to be super woman who can endure this life with the strength of a giant.   I'm just Julie.  Failing and succeeding just like everyone else.  The difference with my life as opposed to other normal parents, is that I am "literally" keeping my son alive.  That is a role I have gladly accepted, even with all of the sacrifices that it brings.  I am entitled to a good cry.  It cleanses out those feelings.

A BIG decision, being Christlike, Fibromyalgia, and Happy Birthday Daniel

November 13, 2013

It's cold outside, the chill and gray colors have slowly replaced our warm fall leaves and yesterday we had our first little snow fall in the morning.

I remember last year, anticipating Daniel's surgery with great fear but with great excitement as well. And now a year almost later, he has shown that it was definitely a great decision.

Daniels spine AFTER

Daniel's spine before!!

 

Making great decisions is not always that simple. There can be great risks involved that really completely lie on your shoulders. The life or death decisions for your child.  But I have felt all throughout Daniel's life that having a concept of "giving him the BEST quality of life that we can" has to continue to be the focus.  It doesn't mean we want him to do things that we do, even if he can't, like forcing him to eat and aspirate. It means preventing illnesses and dangers that will make him sick, and possibly fatally sick.

My life has been a non stop road of managing Daniel's care, dealing with troubled emotional relationships, facing the demons of depression, living in a world as a complete anomaly as a Mom. For instance,always being the only Mom pushing the wheelchair across the Night Hawks football

Daniel at football, number one fan, always with an entourage

field, accepting myself as a caregiver and accepting that I left a career behind to care for my child, desperately trying to make ends meet financially since only one full time job doesn't pay it all when you have a medically fragile child in your home, non stop advocacy and management of so many issues in the special needs world I simply can't list it, being there for my daughter as she went through High School and into college,

Sarah's graduation day 

and being there for my youngest son as he moves into his teen years.  Of of course there is a marriage of 21 years full of ups and downs with many days where I just cry myself to the point of dehydration, and then we face eachother and agree that we need to keep trying and do still have love, but need to heal,  and managing the home.

Probably should also mention, that I have been stricken with incredibly bad fibromyalgia to the extent that some days I am so stiff and in so much pain that I can't function.  The pain limits my enthusiasm for exercise, and my tendency to eat my emotions leads to weight gain.  Weight gain makes it harder to breath at night and then you don't get enough oxygen, and that prevents or slows down weight loss.   I spend every day in pain.  And sometimes the pain management is helpful, but other times nothing seems to help.

So the cold just rips through me like knives.  It is bad.  But I never falter in my daily trek of getting up to change Daniel and get him ready for school. 

Now we face the end of the 2013 year.  So much has happened since this time last year.  Good things and bad things.  Today, I am focused on birthdays that are coming. Sarah is 18 on November 20th. And Daniel is 16 on November 22nd.  

John says there will be no bonus for Christmas this year, and honestly I can't even think that far ahead. I have too many things juggling in every crazy direction.  I am in such a bad financial state most of the time, that just keeping things running is a great achievement.  Sometimes, it gets good, but then whammy bam bang boom, something goes wrong. Again.  And I carry on.

Working flexibly part time now, has been an interesting adventure.  I became licensed at the end of September for Property and Casualty, auto, home, life, etc.  for Allstate Insurance with an agency in Monroe, CT.  I really like the agent in the office, but he hasn't been able to pay me since August due to cash flow struggles. He is a great insurance agent, but his partner died in December 2012, and its been a rough road for him.   So ironically I'm working for free when I really need to be doing other critical Daniel related things.  And the money I am earning, is supposed to be paying bills.  I don't know what I am going to do.   

Isn't it ridiculous that my dream is to get myself into an excelerated BSN program and become a nurse.  If I can embrace the ugliest parts of the medical world, many which I have seen, I know that would completely love it.  

All I want to do is find a career where I can give back to the world.  I'm not sure that insurance is that place.   So how do I wriggle my way out of this when I can't seem to get to the end of each of month with a panic attack followed by a few days of meditation and prayer to revitalize my soul.  

So many people over the years have reached out to help Daniel.  In my heart, every time it happens, I just want to turn around and say God, What can I do?  How can I be your vehicle to give back.   

And the answer to giving back is never quite clear. Except sometimes a miracle happens when a child will meet Daniel, and learn about the world of a medically fragile child like Daniel, and that child will take on the task of volunteering, and helping a child like Daniel.  Years later, I learn that some of these kids are doing all sorts of volunteer work, and in a round about kind of way...letting them know Daniel, has given back.

I am just a 47 year old woman.  I'm no where near perfect.  I have many flaws, but I'm also not the career driven person that I was back in 2000.  I have an MBA, in Human Resources.

Before Work one morning...

Not only did I complete my degree while working full time, I was integrally a part of executive management and I truly most enjoy the training and development part of my job.  People make me tick, helping people, seeing them succeed.  There was nothing more exciting that promoting someone who had worked so hard, and seeing their face light up during that meeting when we promoted them.  I loved my job.  

As time went by, however, little Daniel in daycare became bigger Daniel with seizures, surgeries, sicknesses, and school issues.  His needs would make me worry at work.  Phone calls would come and I would have to leave, always promising to come in at 6 the next day.  My company didn't care about Daniel.  And the race home to Newtown worrying about him, because so bad that I would pray for changes.  

Daniel had his first hip surgery in 2004 I think??  I don't remember exactly. But by then I was no longer working.  I remember sitting with him, right after that double hip osteotomy and hamstring lengthening, and watching him in pain. I would demand that the nurses get the pain team, because he was having a reaction to morphine, and I learned how aggressive I needed to be to help my son.  It was during that stay at Yale when looking into Daniel's eyes I promised him I would be completely there for him.  No more nanny, just Mom.  No matter what it would take.

Now this also came at a time when our medical bills were so enormous, and our other bills were piled high, and we had exhausted all resources to make minimum payments, and more kept coming.  John's insurance didn't cover everything.  Daniel had to go on a long long waiting list for state insurance through a title 19 waiver.  So it was 5 more years of hell.  Of almost losing the house, of filing a partial bankruptcy to clear out the giant pile of debt, thankfully keeping the house and assets.  Well, whatever assets there were.  We had a very helpful and compassionate lawyer who helped us get through a bad time.   And of course, any past debt issues like that haunt you for years, resulting in problems from a parent perspective with Sarah's college.   I just keep going.  It's all you can do.  And I say it, again, and again, and again, and again, "this society, our social programs, our country, does not care about the middle class families who have this type of extremely debilitating circumstance." They want us to be living in poverty with absolutely nothing before they provide any help."   I posted an interview with Russell Brand a little while back, on one of my blog entries.  I won't keep going on that topic.  It makes me cry.

At some point, once I had become full time advocate, Mom, financial manager, care giver of Daniel, something inside my body triggered the Fibromyalgia.  I began hurting physically.  Hurting all the time.  Depression got worse, and I was not sleeping.  Everything got harder and harder, even though I tried to keep a smile on my face.  I kept wondering WTF am I being punished for now? 

As I've mentioned in the past, Daniel had a virus in utero called CMV, Cytomeglia Virus. It attacked the formation of his brain. The virus came from me, obviously.  And it is quite logical that the virus also was the trigger for the onset later in life, of the Fibromyalgia.  There is medical evidence, even though no one can admit it.  If YOU have never heard of CMV, and you are pregnant or planning on having children...please educate yourself about it.

So the journey goes on.

 Julie managing pain. Julie managing Daniel. Julie managing Sarah and Thomas with all of their unique needs and dreams. Julie managing the financial state of affairs. Julie reaching out for help. Julie going to years of pyscho therapy, which I am not afraid to admit.  And Julie begging her husband to deal with his own depression, anger, and physical issues...all to no avail.  So the anger cycle in the house was never broken, and Julie had to do all of the above, always never knowing when an explosion would rock the house.   With compassion, and patience, praying for her husband to understand things from her, well, from MY point of view.  I'm not sure that he has ever accepted the fact that I believe Daniel needs a full time care giver and "manager" per se.   He blames all of our problems on my decision not to work full time.  Which is completely ridiculous in my opinion based on all that I have done for Daniel's life.

So you see, there is so much when you peel away at the layers.  One thing attributing to another thing...  complicated.  I have always been a type A person, wanting to resolve problems. Desiring to talk things through. Advocate of therapy. Wanting to put things out there and face things.  But within my midst was the opposite point of view.  Such as, keep things private. We do not discuss our family issues in public.  Things should be kept quiet. People should take care of their own, and not others. And so on.  This, to me, is a torturous and lonely existence.  Because I believe that God calls us to be brothers and sisters.  I believe that we are on this earth together as one, and part of our love for Jesus is to let him live through us.  That is my spirituality. I don't prescribe to a list of specific "you must do this, and you must do that" or else you do not get into Heaven.  

ON my baptism day at Walnut Hill  community Church

I have let my spiritual self evolve by opening my eyes to the Lord and letting his spirit guide me.  A personal relationship.  And through our personal relationship with God, he calls on us to be loving and to help eachother.


So, no, I will never live in a bubble of "our family is a quiet, non spoken, private, affair".  As you clearly can see, I affirm that in my approach to life.

As do many many other great prophets, philosophers, and just people in general.  But needing eachother, and helping eachother, we are learning and growing in Christ.  To be Christlike, to me anyhow, does not mean to just care about yourself.  

And so, I reach out. I embrace others. I love the children, and the animals. I ask for help because I honestly and completely need help. The universe will present to me a miracle some times, and other times I face stress.  I love this town of Sandy Hook, CT. It is my home.  It is the home of my family.  I do not want to leave here, because the schools and the teachers are so incredible.  My friends and neighbors are beautiful people.  Yes, it is the place where tragedy struck on 12/14/12 and yet, the compassion and love that emerged from that surely made the bonds much tighter.   So I do everything I can to keep my house, to provide for my family, to support my husband while he works so very hard at his job, and to, again, keep the concept going of "giving Daniel the best quality of life that we can".

No matter what it takes.  

Please send a birthday card to Daniel, he is turning 16 on November 22 and we are having a "Card Shower" for him.

35 Bennetts Bridge Road
Sandy Hook, CT  06482

Thank you, if you are one of my friends who has come to the end of this blog entry.  I love you.  I am so grateful for friendships, for prayer, and people who genuinely understand how hard this journey is.  I will be forever grateful and forever have you in my prayers.  

Wow.  All that I just wrote there..  Came out of me like lava.  lol.

Responsibility or Fear, Memories or mishaps, thoughts about the journey, September 2013........

The BEST antidepressant

Henry, 4 months old

September 24, 2013

I walked Henry this morning missing my daughter who is at college, and had myself good cry.  I wonder at times what is going to happen to our family structure because the stress is managed differently by each person.  Things are perceived as having different impacts, or levels of importance.  I manage the daily business of Daniel quietly in my office, by myself.  And I manage it with him, in the house and in the Van on the road to where ever.   The business of what to do, who to write to, who to call, what procedures are need, researching therapies, scheduling scheduling scheduling.  Then of course there is the "getting to places" such as hospitals, labs, clinics, doctors office.   And of course there is also education management.  And equipment needs of course. You know, its all been said before.
  

I have been doing this for a long long long time.   But I still feel unsettled every single day.   And I think its because my family structure wobbles and implodes under pressure.   Research shows, that parents have a greater liklihood of separating in situations like these.  I think inherently the fact that we look at our situation completely from polar opposite ends is a big issue.  

And I have to maintain and manage, for the sake of Daniel. For the sake of the children.  It is I, Julie, who decides which doctor Daniel goes to.  I decide what to do, when to do. I attend the school PPT meetings about his education goals. I take him to appointments, and bring him for blood work.   I feel his pain, and I understand his "language".  And now I am training a special little dog to provide comfort and friendship.

The sun shines.  The moon and stars come out. Another day.  And almost always I feel such an overwhelming responsibility.   

I can do everything.  I can manage it all.  I feel so empowered and so strong.  Until the money part hits.  This is where the polar opposite thing hits.  Do I put Daniel's entire life at chance and go to a full time job?  Or do I stay in my God given role as his care giver, his Mom, his confidence, his love, his support, his world.  

Yeah, I know the answer to that one.  And in prayer Lord I ask that you lift me up.   

And in my walk this morning, I wondered where things are going.  And how some people really just don't have the ability to release perceptions of perfection and what SHOULD BE, and release consuming anger and frustration, and release disappointment and negative expressions...   And I guess we are, who we are.

I met with two amazing young ladies yesterday, Hayley and Romy...  They are embarking on a project called "Fight for Daniel, Forever"  to raise money for him, and also show the community how much they love and care for this non verbal disabled boy, who sits in a small classroom separated from most.  But who meets 5th and 6th graders who come in to volunteer.  

And those girls, as we talked...  amazed me with their mature enthusiasm and compassion.  It wasn't about a "project" that was needed to be done.  It was completely about Daniel and how much he had changed their lives.  And how they want to do something to help him.

Do we need the money, oh my GOD yes...  But it is so much more than that.  Watching them talk about their compassion for the disabled....made me realize the greater good at work here.  These lessons they learn will forever impact their future.  

I am open to help from others, because without it, I would be in a very sad and very dark little place of stress.  

So that's kind of where I'm at today.  What do I do??   

How do I manage the discourse in my personal relationships and still do the best I can for Daniel.

Well, based on Sarah and Thomas...  I think I'm doing pretty well.   If I were able to financially remove some of the pressure, I would be better.  But I have honestly come to accept that it will be with me for the rest of my life, on this physical earth anyhow.

And we are not alone.  A severely disabled child, being cared for in your home... has profound, big time, effects on EVERYTHING and EVERYBODY.  

But the sun goes up, the day is pretty and cool and the moon and stars come out, and we are a day older.   As each day departs, I should ponder, "what did I do today that made a difference?  Am I living a purpose driven life? Do I have memories to look back on that make me laugh and fill my heart with joy? Does the love and behavior in my marriage outweigh the anger and discourse?  Is Daniel happy?  When will I start taking better care of myself?  Have I remembered to keep my faith strong that God will provide what we need?  Am I fearful, or trusting?  What is the best thing that happened today?  

And now.... now it is 10:21am on a September morning.  Very chilly.  The phone just rang and it was one of THOSE calls, the kind I never answer.

And Henry needs a walk.  I need to clean and bake a batch of cookies to mail to my college who I miss with my entire heart.  

The day will end.  I don't know where my mind will be.  But I'm going to try hard to keep my faith in perspective.  Almost 16 years now of raising Daniel.  Amazing stuff.

Julie A. Hasselberger, 

Mom to Daniel, age 15, bilateral diffuse perisylvian polymicrogyria and microcephaly, caused by the CMV virus. Non verbal, wheelchair, seizures, feeding dysfunction, developmental delay, global disabilities, multiple surgeries for hip dysplasia, muscle release, severe gastrointestinal issues, fragile respiratory system, history of aspiration and pneumonia, etc.   That.  Is.  Me. Julie Ann Hasselberger

The words that don't lie.....Living with a disabled child can have profound effects on the entire family–parents, siblings, and extended family members. It is a unique shared experience for families and can affect all aspects of family functioning. On the positive side, it can broaden horizons, increase family members' awareness of their inner strength, enhance family cohesion, and encourage connections to community groups or religious institutions. On the negative side, the time and financial costs, physical and emotional demands, and logistical complexities associated with raising a disabled child can have far-reaching effects as we describe below. The impacts will likely depend on the type of condition and severity, as well as the physical, emotional, and financial wherewithal of the family and the resources that are available.For parents, having a disabled child may increase stress, take a toll on mental and physical health, make it difficult to find appropriate and affordable child care, and affect decisions about work, education/training, having additional children, and relying on public support. It may be associated with guilt, blame, or reduced self-esteem. It may divert attention from other aspects of family functioning. The out-of-pocket costs of medical care and other services may be enormous. All of these potential effects could have repercussions for the quality of the relationship between the parents, their living arrangements, and future relationships and family structure. Having a disabled child may also affect parents' allocation of time and financial resources to their healthy and unhealthy children, their parenting practices, their expectations of healthy siblings in terms of achievement, responsibility, and short- and long-term contributions to the household, and the siblings' health and development. Finally, having a disabled child in the family may affect the contributions of time and financial resources on the part of the child's grandparents or other extended family members, the relationships of those individuals to the core family, and the financial, physical, and emotional well-being of those family members. All of these potential effects on families have implications for the health and well-being of disabled children.
Today’s parents face a world of challenges with everything from keeping themselves healthy and happy to providing their children a safe environment that fosters the physical, emotional and social growth of their children in today’s society. Sometimes the everyday demands of life seem too great to overcome and families will experience stress and/or crisis as they try to survive. Often families will fall apart or choose to split up the family unit in response to money struggles, addictions, abuse, health, or just plain unhappiness. It is no surprise then to learn that having a child with a disability can also drive families apart or into a state of chronic stress or crisis. This does not have to be the case. This article addresses not only how having a child with a disability can impact the family system, but also how families can use their circumstances to become a more resilient and healthy family.
Impact on Family Life 
• Caregivers play a central role in the lives of children and their own wellbeing is inextricably 
linked to that of their children. 
• Compared to families of typical children, caregivers of children with disabilities experience: 
• increased time demands (everyday care, medical appointments) 
• higher medical costs (2.5 – 20x typical amounts) 
• greater childcare challenges (respite care, special accommodation in regular programs) 
• more employment constraints (work schedule, choice of occupation) 
• lower income 
• greater stress, anxiety about the future, lack of sleep 
• Caring for a child with a disability may result in an increase in a wide variety of both physical 
and psychological health concerns for caregivers. 

“…it is not the child’s disability that handicaps and disintegrates families; it is the way they react to it and to each other” (Dickman & Gordon, 1985, p. 109).

Florida Morning wake ups Life with Daniel

September 17, 2013

This is an example of the true joy and beauty that is my Daniel.  We had just arrived in Florida, where we stay at a family member's home.  Daniel was sleeping in the guest room, in a queen bed, with me so I could make sure he was ok and didn't fall out.

When we woke up. He was so cheerful.  He was absolutely thrilled at the fact that above our heads there was a ceiling fan.  Of all things.  Just a regular white ceiling fan, turning and turning.  He thought that was just about the coolest thing he had ever seen.

People work so hard to fill their lives with as much materialism as they can.  Forgetting what true joy of the heart is.  For Daniel, its about as pure as it gets.   He likes the breeze of the fan.  He likes feeling of swimming in warm water.  He laughs and smiles when things please him with no reservation at all.

It's beautiful.  He's such a blessing.

The Real Truth Why We Reach out for help - Part One

On Thursday,June 6, 2013  I began accumulating data to help me understand why there is such a huge financial impact on a middle class or lower class family when they have a child with disabilities.  On June 7, 2013 I had an interview scheduled with the "Newtown Patch" and I was trying to formulate how to explain life with Daniel now that we have been on this journey for 15 years.  But as a very "social media" focused person, I turned to my support families from across the country for their input too.  This blog includes a bit of actual "data" I found. But more important, testimony from REAL families, with REAL issues, living in small towns and big towns.  How could I get my message out, in my small town of Newtown, CT so that people would understand why we need to continually turn to family and friends and community to survive.   The Data was not helpful.  It's the real people, the real stories that pull it together.  AND SUDDENLY, I'M NOT SO ALONE.  

Here is some of the information.  Caution: These are real stories that may break your heart.  


Data:
Aug. 20, 2008 — Families with disabled children are struggling to keep food on the table, a roof over their heads, and to pay for needed health and dental care. But according to a new study from the University of North Carolina at Chapel Hill, these challenges are now falling on middle-income households and not just on poor families as previous research has found.

 A 2011 article by CNN Money estimates the cost of raising the typical child from birth to 18 at $227,000.  A study published in 2004 by the Centers for Disease Control and Prevention estimates the lifetime cost of raising a person with cerebral palsy at $1,150,921 beyond normal living costs. In reality, the cost is much higher because the figure does not include the typical costs for a person to live from age 18 to death.  The study also did not include other expenses such as emergency room visits and lost wages resulting from caring for a person with cerebral palsy.

Real Life Testimony:

June 6, 2013 "oh. how can I put this delicately. WE'RE EFFING BROKE, thats HOW!! We've sold everything, houses, cars, second houses, third cars. 401k? Empty. Savings? Gone. We took lower paying jobs to be closer to home. We moved towns for better services. We sompletely changed our lifestyle to afford more services. We forego dental work for speech therapy. We eat peanut butter and jelly so we can have vision therapy. WE PAY AN ADVOCATE BEFORE OUR RENT. But, you know, other than that, it hasnt been too bad. We are blessed. In exchange for our efforts, our son has improved. Truly, measurably improved from non-verbal and nonresponsive at age 2 to engaged and highly verbal at age six. But it comes at a financial burden. One we happily bear, and would again. We cannot retire, are stressed beyond belief, and have terrible rotten teeth. But our son has improved."

Data:

Living with a disabled child can have profound effects on the entire family–parents, siblings, and extended family members. It is a unique shared experience for families and can affect all aspects of family functioning. On the positive side, it can broaden horizons, increase family members' awareness of their inner strength, enhance family cohesion, and encourage connections to community groups or religious institutions. On the negative side, the time and financial costs, physical and emotional demands, and logistical complexities associated with raising a disabled child can have far-reaching effects as we describe below. The impacts will likely depend on the type of condition and severity, as well as the physical, emotional, and financial wherewithal of the family and the resources that are available.

Real Life Testimony:

 June 6, 2013 , how has it affected our financial stability = we have NONE. at any given point in time we could end up hospitalized for months (case in point now), and my fiance could be out of work while we travel hundreds of miles between multiple hospitals. we lived on XXXXX's  SSI, because we decided not to tell them we were inpatient, knowing that it would immediately cut our monthly payment from 721$ to 30$. wed rather have to pay it bacnd strangek slowly after the fact. we spent two months living on the kindness and charity of friends family and strangers.

Data:

For parents, having a disabled child may increase stress, take a toll on mental and physical health, make it difficult to find appropriate and affordable child care, and affect decisions about work, education/training, having additional children, and relying on public support. It may be associated with guilt, blame, or reduced self-esteem. It may divert attention from other aspects of family functioning. The out-of-pocket costs of medical care and other services may be enormous. All of these potential effects could have repercussions for the quality of the relationship between the parents, their living arrangements, and future relationships and family structure. Having a disabled child may also affect parents' allocation of time and financial resources to their healthy and unhealthy children, their parenting practices, their expectations of healthy siblings in terms of achievement, responsibility, and short- and long-term contributions to the household, and the siblings' health and development. Finally, having a disabled child in the family may affect the contributions of time and financial resources on the part of the child's grandparents or other extended family members, the relationships of those individuals to the core family, and the financial, physical, and emotional well-being of those family members. All of these potential effects on families have implications for the health and well-being of disabled children.

Real Life Testimony:

June 6, 2013 - It has taken everything we have to barely stay afloat. When our son was born I had to quit my job & my husband had to take a lesser paying job so that he wouldn't have to travel anymore. We have a daughter as well as our medically fragile son. So he has to stay with her when I'm in the hospital with XXX.  One of our hospitals is 3 hrs away. If it weren't for the help of friends & family we wouldn't have made it this far.

Data: 

Surprisingly little is known about the ripple effects of child disability on the family. Population-based research, particularly on demographic or economic outcomes, is scant. Existing studies indicate that having an infant with a serious health condition or health risk increases the likelihood that parents divorce^[or live apart; that the mother does not work outside of the home; and that the mother relies on public assistance. It also leads to a reduction in the father's work hours. Another study found that parents with disabled children have lower rates of social participation than parents without a disabled child and that they are less likely to have large families.

Real Life Testimony:

June 6, 2013 xxx's dad left when he was a baby so i have always been a single mom working two jobs or more. after his surgery i could only keep one job since i am up all night with him on the vent. he has CCS California Children Services and they pay for all his vent/trach supplies and his formula, and he gets SSI. But like xxxxx said it is the unknown that is scary. what if i lose this job or xxxx has to go inpatient. We are not allowed to have more than 2000 saved, which is actually funny since we live check to check, but there is no security. my mom buys our groceries at least twice a month or we would starve.

Data:

When a child is diagnosed with a chronic condition such as polymicrogyria, the entire family is affected. The dream of having a typical child is no longer a reality, and the family will experience many changes over time. Many of these children may live into adulthood and will be cared for in the home or communities by their parents or caregivers.

Any chronic illness is stressful. An important factor to note is that parents had many responsibilities prior to the birth of a child with chronic disabilities. With the additional responsibilities that must be managed, the stress level of the family may increase and can lead to frustration and exhaustion (Enrione et al., 2005). 

Real Life Testimony:

June 6, 2013 I agree, you deplete everything you have to do the best you can for you child and you envision yourself as an elderly couple at 95 (if heaven help us we live that long) years old and working because you don't have a retirement.

 Keep in mind too that with the number of kids in the pike, many states may have problems funding them all as adults. According to an article in the Poughkeepsie Journal a few years ago, in New York the average out of pocket cost to run a day program is $37k and the average out of pocket cost for a group home is $111k. Think about that over the average lifespan. Here is a link to the article:http://www.poughkeepsiejournal.com/article/20100905/NEWS/9050379/-Confidential-paper-Quality-care-developmentally-disabled-would-fall-without-overpayments

Data:

Certain factors or transitional times can be very stressful for the families of children with chronic disabilities. Five such transitional events have been identified and include receiving the initial diagnosis, reorganizing tasks within the family, performing skills necessary to manage the condition, recognizing the child's failure to reach appropriate age-related milestones, and observing a change in the course of the child's illness (Meleski, 2002). It is helpful for the healthcare professional to be aware of these transitional times and to intervene with encouragement and guidance to help the family adapt to the situation. Interventions include providing support options, sharing information about the disorder, helping in the management of the child, supporting families with role changes, and assisting families with normalizing their lives (Meleski, 2002). 

Real Life Testimony:

June 6, 2013 How about the fact that it took about two years for ssi to go through despite clear medical knowledge of brain damage, seizures, learning disabilities, etc. while we had no medical and seizure med cost 1000 dollars a month. Something needs to be done to help families who make slightly too much to qualify for medical insurance. Waiver programs have very long waits. For us it was 100 dollars over the state limit and my husband had to quit so my daughter could have her medicine. The sheer cost for some to get to medical appts also. There have been countless months where we drove anywhere from 100-500 miles to dr appts for our daughter alone. Knowing there are not really jobs out there that would work around the sheer number of appts we have in a month. Stuck at home because my husband, daughter and son are disabled and my husband lost his license due to seizures. I am the only one to run 3 people to many appts! Our county will give mileage for in county appts but there are far more appts out of county and 12.5 cents per mile does not even cover gas. Also the fact that the extreme mileage drove my car into ruins, but not allowed to use any of the large amount of ssi back pay towards another car to get to appts. Our children's hospital requires a parent to stay with children during hospital stays. That means either I have to stay there the entire time or drive the hour and a half to drop my husband off there, only to have to drive home again. I can't fathom how a single parent would be able to stay! If I stay, the rest of my family is stranded at home because my husband can't drive. The amount of time sitting in drs offices, because often times it's an hour before you even go back, then another hour before you leave. The amount of pain I am in by the time we get home because my sciatica and sitting/ driving that long. The times when we have to decide whether gas for the car, oil for the house or food for the pantry is more important because the income from disability and ssi does not near cover it all, unless of course I'd default on our home and go live in public housing. Having to explain to your typically developing children why they can't join a sport or have new clothes because most of the money has been spent on necessities. The stigma, looks and comments about why you don't work and all the people who think it's so easy to live off of disability. The hurt look on your child's face because her friends parents won't let her spend the night because they are scared of seizures. Trying to keep it together when your child is in a life and death situation. I've written a book already, but could probably come up with more.

Data:
Of concern is evidence that indicates that these families are bearing more than their “fair share” of the costs of caring for their children. Families who care for a child with a disability are more likely to have non-reimbursed expenses for disability-related supports. The literature reports troubling findings that uncover an association between low income and children with special needs, with associations between these factors that might go both ways.

 A recent national U.S. study reported that 40% of families of children with special health care needs experience a financial burden due to their child's condition. Similar findings have been reported in other countries.

 Hence, not only is the child with the disability affected, but so is the family. For example, in order to meet their child's needs, families who care for a child with a disability are more likely to be single income families with lower quality jobs yielding lower incomes, to live in poor quality housing, and to live in poverty. Furthermore, these families are more likely to be single-parent families. Moreover, parents of a disabled child require more time off work and are more likely to work reduced hours and to decline overtime.

Real Life Testimony:

June 6, 2013 I just wanted to say that I have a daughter that was born premature and was diagnosed with Acute Lymphoblastic Leukemia and from both of these things combined we have a very unique situation. No one really has an answer for us. We work with Yale New Haven Hospital Child Study and a bunch of other Dr.'s and still don't have many answers. What we have been told is that she has a cognitive disorder and dispraxia along with autistic type qualities....it's been a struggle to say the least. We have given up hope on ever owning a house, more than one car , going on vacation...or even the movies. We pay for state insurance here in CT , but , because we look good on paper we don't get as many things as we need for our daughter. We have lost friends to this that " just don't understand why we can't just go out ". In 2010 we decided to go up against the school system that our daughter is in and we hired a lawyer so we now have that cost. I think that most of all what it makes us feel is alone. We are always the house where the play date is at , always the parents that take all of my daughters friends out because we are afraid that something will happen and the parents will not know what to do. Our family won't even watch our daughter anymore......it's been tough.
What I will say is that my husband and I work really hard to get my daughter to where she is today...REALLY HARD. Our motto is , suffer with her through it now to enjoy life later..
We wouldn't change our daughter for anything, but it would be nice to live in a world where familys like ours had more support.

Data:
Economic Costs of Childhood Disability

Childhood disabilities entail a range of immediate and long-term economic costs that have important implications for the well-being of the child, the family, and society but that are difficult to measure. In an extensive research review, Mark Stabile and Sara Allin examine evidence about three kinds of costs—direct, out-of-pocket costs incurred as a result of the child’s disability; indirect costs incurred by the family as it decides how best to cope with the disability; and long-term costs associated with the child’s future economic performance. Not surprisingly, the evidence points to high direct costs for families with children with disabilities, though estimates vary considerably within these families. Out-of-pocket expenditures, particularly those for medical costs, for example, are higher among families with children with a special health care need. An important indirect cost for these families involves decisions about employment. Stabile and Allin examine several studies that, taken together, show that having a child with disabilities increases the likelihood that the mother (and less often the father) will either curtail hours of work or stop working altogether. Researchers also find that having a child with disabilities can affect a mother’s own health and put substantial strains on the parents’ relationship. In the longer term, disabilities also compromise a child’s schooling and capacity to get and keep gainful employment as an adult.

Real Life Testimony:  (no more data, this is becoming a reality Blog now.......

 June 6, 2013 lifestyle whats that??? lol...ours went away about 5 yrs ago lol..now its just the basics .

 June 6, 2013 It's also the long term can/if my child can live on their own, if not who will be there when I'm gone? The fear that without us as parents nobody will care for them in a respectful way. It's not just financial it's all encompassing, who will make sure they have the correct med? Who will remind them to eat healthy, who will carry the burden when we are gone?

June 6, 2013 Oh and by the way, I don't want to hear any complaint from people who have to pay a hefty college tuition. We pay college tuition rates year, after year, after year....

 June 6, 2013 As you are well aware, it puts an enormous financial burden on the families. We had a $2000 prescription rider on the family for any one person. XXXXX blew through that in a month and a half, and then it was all out of pocket for us. And when you pay 20% of hospital bills when they are so high, we are talking thousands upon thousands of dollars. Of course this puts an extreme strain on the couple. We were lucky enough to make it though still loving each other...but we had some really rough years there ourselves. And XXXXX only lived to be 4 years old.

June 6, 2013 I agree, you deplete everything you have to do the best you can for you child and you envision yourself as an elderly couple at 95 (if heaven help us we live that long) years old and working because you don't have a retirement.

June 6, 2013 I think our costs have about evened out with medicaid helping. Although we do have to travel MUCH more for our day care. Overall cost with our 4 year old to date would certainly be in the 7 figures, if we didn't have insurance or were under-insured and then Medicaid we'd be hundreds of thousands in debt by now. We miss a lot of work which causes some instability. Once in a while I feel like my whole life is a house of cards and the next puff of wind is going to send it crashing down. We manage but it feels like we're surviving not thriving quite often. Our 4 year old boy is 100% disabled, immobile, g-tube, zero developmental benchmarks, has regular seizures and prognosis is terminal. BUT... He is so sweet and beautiful, never complains, smiles, he's an angel.


June 6, 2013   in my case, my childs father passed away when she was one month of being 5 yo, I paniced big time, she draws social security survivorship from her dads death now, I have since remarried to a wonderful man whom thinks of her as his own, his world literalJune ly revolves around my child. because of my new husband, I don't have to work thank you lord for that, although I do work as an office manager once a month for extra money and to get the office file system and scheduling organized. I spend (this week) 3 days driving 2 hours one way to the childrens hospital, an average of 2-3 times a month same distance to appointments. Which the gas prices these days is killing my wallet there, the county is helping with gas vouchers, nothing from the state uughhhh If it wasn't for my husband now I don't know what we would do, no family support at all, and we live check to check as well, not eligible for food stamps or anything, therefore hubby and I go without just so kids get what they need...

June 6, 2013 exactly, the way SSI works is you cant ever be comfortable or they assume you dont need the assistance. but look at how expensive EVERYTHING is for these kids. we live check to check, are always behind with bills, live without alot of things, its just hard, theres never any comfort at all, because you just never know. and it takes FOREVER to get things covered by insurance most of the time. it shouldnt be this difficult to be us and live the lives we live. theres too much red tape and too much bureaucracy to deal with.

June 6, 2013...My first financial wake-up call was when I was looking for 10 hours a week ABA for my 3 year old son. Insurance covered nothing and I was quoted $800-$1000 a week for 10 hours of in-home ABA. AND there was a 6 month waiting list. I don't know anyone who has that kind of $ around.

June 6, 2013 My husband and I have just spent hundreds of thousands of dollars creating our own group home for our son and two other young adults with Autism. We started when he was 19, finished when he was 21. Between this son and our other two kids post high school educations we can't catch our breathe financially.

June 7, 2013 ...Indirectly financial... We decided not to have a third child because we don't know to what extent Dom will need our resources both financial and time. We want to make sure to give him as much as we can!

June 7, 2013...divorce.I work part time time to help cover some costs of living but can only work part time because of the time needed to dedicate to appointments and follow up (education/medical) for my son (with pmg) - not counting what my other children (2 of them) require.  My daughters lives have been affected by their brother, on a day to day basis and my son's father is in denial.

June 7, 2013 It has crushed us financially. It has been the downfall of my marriage. 

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   June 7, 2013 I was talking to a mom the other day and she said that anything that really is effective isn't reimbursable. Im a music therapist and I fight with insurance all the time. When it comes to reimbursement, CT is behind the ball! As moms we just have to continue to fight for our kids no matter what. I hear you though, it strains the family, the marriage, and the pockets.

  June 7, 2013 My marriage is stronger having a special needs child~we realize it takes both of us to raise him!!!! Financially~wow where to begin~we decided that it was best if one of us stayed home~so there is so much we struggle with but very fortunate that I have a very good job with great benefits. Not sure we will ever be out of debt but we are happy! PM me if you would like more info.

  June 7, 2013 We can barely afford to pay our mortgage and will probably lose our home. This has destroyed us financially and emotionally.  Without support from church, friends, and family we would probably be on the street somewhere.

  June 7, 2013 before xxxx was born, I homeschooled all our others. That left a lot of money free. When she was about 14 months, I started having panic attacks about juggling it all. So we made the extremely difficult decision to put them in school. The high schools in our area are not good, so we put the two oldest in a wonderful private Christian school. It has been amazing for them, but the cost is staggering for us. And because of all the incidental costs of raising Sami, that don't appear on paper, we make too much for financial aid. 
  Emotionally, last year I had 4 children in 3 different schools, all with their activities and volunteer needs, most of which I can't do. So I completely understand that mommy guilt. 
  My son is almost 16, already has his own car, which needs work that we can't afford. My daughter babysits a lot, and has to borrow a phone because hers broke and we can't afford a new one. That same daughter is turning her few pairs of jeans into shorts because she really needs new clothes, that I can't afford. The kids want to do activities, like piano, voice, dance, sports, that I dole out like gold because it all costs money. 
  xxxx and I don't go on dates much, or getaways at all. We look for free things to do as families. 
  I recognize that we are so blessed compared to others. We have enough to meet our needs. There is much less than there used to be and there is much more stress. Money stresses me out. Spending quality time with everyone is stressful too.Emotionally, last year I had 4 children in 3 different schools, all with their activities and volunteer needs, most of which I can't do. So I completely understand that mommy guilt. My son is almost 16, already has his own car, which needs work that we can't afford. My daughter babysits a lot, and has to borrow a phone because hers broke and we can't afford a new one. That same daughter is turning her few pairs of jeans into shorts because she really needs new clothes, that I can't afford. The kids want to do activities, like piano, voice, dance, sports, that I dole out like gold because it all costs money. Luke and I don't go on dates much, or getaways at all. We look for free things to do as families. I recognize that we are so blessed compared to others. We have enough to meet our needs. There is much less than there used to be and there is much more stress. Money stresses me out. Spending quality time with everyone is stressful too.

   June 7, 2013 Finances- we just accept the fact that we will die with no money and that's okay. We are 54 and 47 with 8 children. We spent our equity from our home to adopt our 4 children and we have very little if any money. This was a choice and we feel that although money is important its not the end all. Giving children a family is more important. (our SNs kiddos would have never survived if left in the orphanages) Money-its over rated. I think folks would be shocked if they knew how little we have. Given our ages and the amount of children I think folks think we have money. LOL

  June 7, 2013 My biggest challenge is being able to make life for my other children as normal as possible.Of course it is not like others, as we, as parents usually have to divide and conquer. Its hard for us to both be there for our other childrens events at the same time. This is the one thing that I find difficult. On the flip side...my other children are growing up with a compassion that most other kiddos don't have. That's the challenge we face daily. (aside from the stress of watching my son struggle with issues like breathing) I currently have 6 younger children living at home as well as one adult child still in the home and "time" to date each one individually has become a tougher thing. (usually my adult son gets jipped) As far as hubby and I, we are grateful that we both put our kiddos first.I do miss our time alone but its very bearable when we are "together" raising these kiddos. I think having SN child/children teaches our other children that "its not always about them" since we live in a very self centered world. Not sure if this is what you arelooking for but this is what I thought I could share. PS I am VERY tired often from lack of sleep. Ice tea is my best friend since I'm not a coffee drinker! LOL

  
  

  June 7, 2013 My daughter passed away at the age of 5.  We were financially devastated and bear the pain that we could never get what she needed in order to have a better life. She would probably still be with us.