I am Julie, Daniel's Mom. Daniel has Polymicrogyria. His brain is deformed, caused by a virus in utero. He has seizures, developmental delay, motor dysfunction, severe reflux, respiratory problems,etc He is unable to speak, eat by mouth, or walk. Visual strength and a gentle touch are his means of of communicating. Daniel has strengthened my belief in miracles and faith. Enjoy. Share. Follow. Help. Laugh, Pray, make a new friend.
Today is Friday, October 18, 2013. A very beautiful October Fall day in Sandy Hook, CT. I'm kind of a hot mess, but a happy hot mess, I guess. Feeling really bad physically and really do need to get to see the rhumatologist but I keep forgetting to call, and now its Friday. OH WELL
The Fall weekends are typically full of football and "doing the leaves" because we have a zillion trillion leaves.
Daniel enjoys watching the leaves fly around when John uses the blower, and Henry has discovered his joy while jumping and frolicking into the leaves. I am trying to train the pup to collect firewood, but so far he just chews the sticks. He still needs alot of training, lol.
This afternoon I took Henry over to STARR, his classroom and when I walked in Daniel had been laying down sleeping. The girls were all singing and having a Friday moment to the soundtrack of Jersey Girls, and I tell you, it was so nice to walk into such happiness. It is now several hours later, and, I can not stop belting out... "I LOVE YOU BAAABY, AND IF ITS QUITE ALRIGHT..nah nah nah BAABY" etc etc "your just too good to be true, can't take my eyes off of you" Thanks alot guys.
Please feel free to follow my video channel on You Tube, as I am working on my vlogging skills. It's wonderful to watch the progression of things, and wonderful to hear myself whine about how hard life is. lol. I am also trying to do more taping and find more places to do submissions to, because who knows maybe someone like HGTV will pick me for a home show. I love that. We were once on the John Walsh talk show and it was so much fun. I need to have that VCR tape converted so I can watch that show again. I would love to be on TV like that again. That's just me. I think John Walsh only had a talk show for a couple of seasons but he best known for Americas Most wanted. He was such a great guy in person.
I was told that there is a lunar eclipse tonight, so I will try to get some footage of that. Unless it takes too long. But still, pretty cool when that happens.
Well, I'm chilled and tired, and I have NO DINNER prepared for certain hungry people who will be expecting me to provide food. But instead of providing said food, I am typing away on my blog talking to you people. I guess I am what you would call an anomoly. I do not fit into the typical mold that most Mom's do. I hate cooking and I would rather just eat soup and go to bed. Mostly because even as I write this I can hear Daniel downstairs crying. So if my writing becomes random its because my brain begins randomly switching channels to worry channel, hungry channel, eclipse channel, and basically I am just a hot mess.
This child of mine
you stare at so,
Please come closer so you will know
Just who my child is and what I see
when those sweet eyes stare back at me
I see no limits to my child’s life
Although I know
It will be filled with strife,
I’m hoping that doors will open each day
I’m praying that kindness
will come his way
You look frightened?
You tremble with fear?
Come, come closer
touch him my dear
Touch his cheek so soft
so sweet
Be one of those people
he needs to meet
Someone who will look
and hopefully see
The skill, the talent
The ability
Please come closer
You don’t have to speak
Come a little closer
Just touch his cheek
And when you do
you will see
this sweet, sweet child
is no different
than you or me
Daniel in December 2012 under the care of Pediatric GI for severe pancreatitis
Gastroenterology has been following Daniel since he was an infant. We have gone through several physicians, but originally we started with the pediatric GI team at Yale. At some point, they had no doctors and they referred us to Connecticut Children's hospital. Its always a crap shoot with doctors, but we had a terrific doctor for many years at CCMC. Then he left. And we got shuffled. Care has been, OK. However, when Daniel had acute pancreatitis last December the Yale Team was outstanding. I decided to transfer for his care for his GI and nutrition back to Yale after all of these years. It's closer, and we have many other specialists there. Deciding which specialist to bring your child to, for their complete nutrition and contol of reflux, etc. is a big step. You have to trust and have confidence. I kind of lost some of that with CCMC, only because the doctor was very busy with his research projects. Anyhow, its all good. This explains what the GI doctor is, and what they do. I talk about GI alot, this is Taken from the Yale website...
YALE SAYS "Our gastroenterology and hepatology doctors are nationally recognized experts in all aspects of nutritional, liver, pancreatic and gastrointestinal disorders, and skilled in the most up-to-date and innovative diagnostic and therapeutic approaches for children. Gastroenterology
The Pediatric Gastroenterology program offers diagnostic and treatment services for children and adolescents with a wide-range of common and rare gastrointestinal disorders.
The Pediatric Irritable Bowel Disease (IBD) program provides care for patients suffering from inflammatory bowel diseases, such as Chron's disease, ulcerative colitis and other intestinal disorders. We combine a multidisciplinary approach with the latest diagnostic methods, research-based treatments and surgical approaches to develop effective, customized approaches for each patient.
Understanding that teenagers and young adults with IBD have a unique set of needs, our transition program helps prepare them to become independent in caring for themselves. Our partnership with our adult IBD program helps us make the eventual transition from pediatric to adult gastroenterologist a positive experience for all.
The Pediatric Gastroenterology program cares for children with a wide array of GI disorders,
including:
Abdominal pain - Yes Celiac disease (nope)
Chronic diarrhea yes Constipation yes Failure to thrive yes
Feeding problems/swallowing problems yes
Gastrointestinal esophageal disorders yes
Gastroesophageal reflux yes
Inflammatory bowel disease nope
Lactose intolerance nope
Malabsorption yes
Nutritional support of acute and chronic disease yes
Pancreatitis yes
Peptic ulcer disease nope Vomiting yes
a rate of 90mls per hour 24 hours a day
SO THE NEXT TIME YOU SIT DOWN TO EAT AND ENJOY A NICE MEAL, YOU ARE VERY LUCKY AND SHOULD BE VERY GRATEFUL. DANIEL CAN NOT SWALLOW SAFELY
I am a Mom. I have three kids. They are 17, 15, and 12. Lot's of people are Moms. There are thousands of kids just in my town alone. And of course, they all have a Mom. Typically. Not always. But they have someone.
Being a Mom to a disabled child in a wheelchair is just another way of being a Mom. But instead of enjoying PTA (who has time for that?) meetings, going to Yoga class, meeting friends for coffee, and preparing meals for the family I have a long list of responsibilities. I don't feel like I am always very good at organizing myself, and that is because I feel like I'm stuck in quick sand, gasping and grasping to get back onto the solid stuff.
If you asked me at this moment, What does taking care of Daniel entail, I will spill out whatever is in my head... here goes! Spilling off the top of my head. This is not a complete list.
Gastroenterology for nutrition and stomach related disorders.
Pulmonology for breathing, asthma, aspiration risks, making sure Daniel doesn't get congestion. Pnuemonia prevention. Need to get that Flu shot!!
Neurology. Seizures. PMG causes seizures. They are the silent demon. Need to go for EEG's and blood work, because seizure medications are tricky. Must monitor blood levels in association with growth. Neurology is my right hand with Daniel.
Endocrinology. The bone doctor, as we call him. Crap, need to get the blood work there too. Daniel's bones are demineralized and endocrine helps us monitor calcium and phosphorus in the bones.
Orthopedic surgeon. We have two. One is for the hips and general ortho needs. Two hip surgeries, and the liklihood that eventually the hips will go dysplasic again. Every 6 months the x ray tells the story.
Spinal orthopedic surgeon. Now that Daniel has a back full of metal straightening up his spine, there are concerns and continual monitoring of the bone fusing, and any possible issues of infection in the site. Scoliosis would have probably killed him eventually. But this surgery was risky.
Physiatrist. What they call "Pediatric Rehabilitation Medicine" helps us with muscles and spasticity, recommending and prescribing surgery, writing scripts for equipment needs, and inspecting braces, botox injections.
Therapy. Monitoring what is going on with Physical therapy, Occupational therapy, and speech therapy both at home and at school. Researching additional therapy, music, aqua therapy, etc.
Social Services and Katie Beckett waiver program. Daniel's insurance is acquired via social services and the waiver is his title 19 waiver. I have to make sure appropriate forms and paperwork are completed on a timely basis. When things are not approved, appeal. Call for help. Request nursing hours. It's pretty confusing because I do not have a case manager per se. We have two different agencies providing home services.
Equipment needs.
Supplies ordered. Medications renewed and picked up.
Issues resolved with broken equipment from the equipment repair department.
Special needs BED breaks, must contact New Hampshire. Same for the lift system. Prism Medical
Mri's, x rays, EEGs, blood work, barrium studies, endoscopies,
ATG Rehab.
Professional Home Care.
Byrum Health care. Order diapers.
Buy wipes. Buy diapering products.
Lift van. 6 month maintenance. Repairs. Ride-A-Way in East Hartford is one hour away.
School Education program. IEP's and PPT's.
Drooling.
Hand biting.
G tube changes.
Appropriate toys, and activities.
Home standing.
Apps.
Laundry, pads, bedding and keeping his room sanitary.
Monitoring him while sleeping.
Financial concerns for his future.
WHEW!!!
And hey what about this too. I am also the regular Mom. Taking him to the dentist (needs antibiotics first). Hey we have a "regular" pediatrician too for "regular" things like immunizations, physicals, and general illnesses. Daniel needs new clothes for the seasons, and he also needs to have hair cuts and a little bit of shaving.
Watching Thomas play football
And now, we have Henry the "service pup" in training. A wonderful thing, but to me, like a newly acquired child. Not just a dog as a pet, but a very special companion trained to be with Daniel and bring him support, friendship, comfort and more. Woof.
Motherhood is about unconditionally loving your beautiful children, and providing them with everything they need to grow into adults. Special needs Motherhood, is unconditionally loving and caring for a completely dependent individual for the REST OF YOUR LIFE, or the CHILD's LIFE, whichever comes first.
Daniel, Henry and me always right there...
I am a Mom. I am a wife. Since I don't work full time, or much time, or any time sometimes I am expected to manage all of the finances, manage the home repairs, manage the auto repairs, grocery shop, cook, clean, dog duties, go to the dump, and everything else you can think of regarding a home. I am a Mom. Just like so many other Mom's. I don't sleep much. I have health that is deteriorated. I dream about not worrying about money. I wish I would stop signing into the bank app to make sure checks didn't bounce. I rarely have "enough". I always have to juggle. I hate the anxiety on top of everything else.
I try to make ends meet. (help) Daniel's expenses completely tip the scale. (help) The "normal" things like lessons, football, school lunches, and new sneakers I could handle. Look at my list above, it's not even everything. Daniel is an expensive child. Many things are compromised.
Some days I cry. Some days I rally like a freaking soldier out to save the world. No going out to dinner, no second honeymoon by the sea, without a nurse I can hardly take a shower. I love my kids. One is successfully off to college, she's beautiful and smart. The youngest is 12. I'm still going to be doing all of the above listed things, year after year, while most Moms can find new hobbies, new jobs, buy new cars, and shop for clothes I will be sitting here trying to find ways to keep Daniel healthy and safe. Special Needs Mom's are like that. Our kids, don't leave.
This Pup is my best friend
Fundraising has helped so much. I need to pay for so much. As I sit here today, writing this, I am worrying. Costs here monthly are thousands above a normal home. People who realize the dark hole that this life can be, reach in try to provide relief. Sometimes it's money to Daniel's account. Sometimes its a sunny yellow plant on my doorstep. Sometimes its a bill from the plumber that says, amount due ZERO. Sometimes it's just another Mom treating me like a regular Mom, but that doesn't happen much. Because I'm special. Inspirational. Strong. A role model. Incredible. Super Mom. And then SuperMom asks for help. Do you know that it's really hard to ask for help? Now I've realized that God sends miracles in the form of connections. People want to help. And in turn they develop a relationship with a very special boy and his very not "normal" Mom. I think Sandy Hook, CT is a nice place to raise my kids, I want to stay.
My children.
Well. I am a Mom. All Mom's have challenges. This is my challenge. "Providing Daniel with the best quality of life possible, while also keeping a roof over our heads and a safe car to drive, and food on our table."
I am a Mom. I am not super human. I am lonely. I am depressed. I am hurt. I am stressed. I am happy. I am sad. I am exhausted. I am mad. I am whatever God gives me as my daily dues. I love my kids. My kids love me. This is not the Me I signed up to be. It's all just fine, it's got to be. Please, just remember "me".
It is part of things. You know, history. Things that happen. And as much as we become soldiers of resolving to choose love, and to be kind, history can not be changed. Each moment, becomes history. We are creatures, who for the most part, want to live a life of love. A life where we fulfill whatever our interests are, and support whatever our goals are. And then really bad things happen.
Here, on Bennetts Bridge Road in the small town of Sandy Hook, CT we had just moved across town and into this house when September 11, happened. My youngest was only 6 months old. It was such a profoundly horrific thing that all life just stopped as we knew it. People, being people, got back out there and back to their lives. But I'm sure there are many, directly affected, who are never ever going to face the day in any way remotely close to how it was on September 10, 2001. I remember so many shocking and strange memories and feelings from that day. But I didn't see the smoke, hear the crashing of the planes, see bodies falling from the buildings, feel the earth shake as the towers fell, or stand for weeks with a lit candle praying for a lost loved one.
On November 8, 2008, a beautiful young man, at the tender age of 13 was taken from us too suddenly. A neighbor, a friend, a vibrant and smart young man. He had ridden the bus with my daughter since we had moved here, and she started first grade. His passing altered her reality and security, for the rest of her life. I know that there was so much pain not expressed, but it was not supposed to happen. A 13 year old boy, sudden and tragic, doesn't die and leave his family. We miss him. We think of him. We pass his family's home every single day. And I recall shuddering and crying for his Mom. And I recall that my daughter would never again ride the bus to middle school without him there anymore. History. A moment in time that didn't just mark an event, it marked a significant change in the path of a plan for a happy future. Sandy Hook, CT mourned the loss of this child, but time went by. He has been remembered, and honored. And will always be a part of who we are.
But, last December 14, 2012, when Adam Lanza, a neighbor, decided to take his family guns and go on a murderous rampage in a quiet sleepy little town, history became black. Dark. Painful. A black hole of confusion. Wonderful families with plans of great futures, losing their 6 and 7 year olds. And teachers, just doing their jobs and supporting their own families, became heroes, and loss lives too. All right here. All within a few miles of where I sit and write about "Raising Daniel Hasselberger". As I drive down my road now, I pass the home of our friend who passed in 2008, and I pass the homes of 4 or 5 neighbors who buried a child less than a year ago. And as much as we pull together our healing resolve, trust me, this is an incredible town, it still hurts us. We all remember where we were that morning, what we were doing, where we were driving. There is always a sickish feeling when I pass the Sandy Hook fire department and the road that lead to that school. Because my kids went there. And it was a happy wonderful place for them. And its now a black, solemn place, hallowed ground. Evil walked there. And no one else wants to.
I was tending to Daniel then, who was very ill and in the hospital. Now, he is quite well. And we are so pleased with how much better he is as we face this Fall.
But history, even though it is the past, pulls at our hearts when we least expect it to. Sandy Hook, CT sometimes feels like just another town, roads I pass to get to the bank, gas station, grocery store, schools... And other days, there are reminders that you see in the form of remembrance stickers and magnets on the back on almost all cars. Green. Green and white for Sandy Hook. It will never be the same here. How could it ever. Nor should it ever. History changed the road. But we still live here.
And in my house on Bennetts Bridge Road I raised my daughter, and did my best to give her as much as I possibly could. Even though we struggle and scrape, her future was so very important to me, to get her out of this town, and somewhere else with new history to make and face. And in my house on Bennetts Bridge Road, I am watching this young man named Thomas, emerge. He is brilliant at music, bass instruments likes Baritone sax and Trombone. Great kids, a part of the flow of the school system, participating in so many activities, mostly related to music and the arts. And also in this house, we are raising Daniel. Daniel who will never speak words, who will never express to us how life is affecting him. He just watches. His eyes absorb. His ears hear. His hands feel. And I admire his never ending smiles that come at the times when you think he really should not be smiling now. All of those surgeries, all of those physical and mental impairments, all of those seizures, and spasms, and cramps, and pains. And he laughs like he has just heard the best joke ever, every day.
Does history change a child like Daniel? I don't know how much he is mentally aware of bad things. But I do know that he senses my physiological changes. He participated in activities designed to help the kids heal and persevere. He met the Giants!!! Did he really know who they were? Maybe. But they treated him like a king and it made me feel included that day. Daniel wakes up to the same routine, pretty much every day. And most of his day is spent monitoring his physical status. I never knew if he understood fully the change to our community, but I do know that the dogs who came into his room significantly affected him. There were a few who like him particiularly alot. And next thing we know, to make a long story shortened, a beautiful dog was donated for him from Ohio. History made that happen. Without 12/14 we would not have had dogs in school. Without Dogs, we wouldn't have seen how much a service dog would change his life, and now that we have Henry. Well, he is just this beam of joy and intelligence. He has a calming effect on all of us. Because raising Daniel in the sense of surviving financially is stressful. Painful. and just plain crappy sometimes. Henry, has lightened the load, except for the vet bills and the expensive dog food.
History. Loss. Pain. Shock. Grief. The sun comes up, the sun goes down. We who have faith believe that God is holding us up, somehow, as we say good bye. Like we did to our friend Ryan last week. Daniel's only friend in school. So soon. Too soon. And I am no longer questioning if Daniel is mentally aware when changes happen, I am certain that he is aware. He has missed Ryan so much. And the energy from that wonderful boy is now in another form.
So here, on our road, on Bennetts Bridge Road, in Sandy Hook, CT we have experienced 9/11/01, me being terminated because I had a disabled son, financial hardship in great form, countless surgeries for Daniel, seizures, pneumonias, many late night 911 calls, the loss of dear dear Brennan, the loss of my brother in spirit, Ed Muratti, more sickness and exhausting sleep deprivation, and December 14 of last year. And now, most recently, the loss of our friend Ryan, also a Newtown student now in Heaven.
So we release an orange balloon into the sky. We see the balloons marking special birthdays. We cry. We try to be joyful. It's really pretty damn fucking confusing for me, most of the time. I'm happy, I'm sad, I'm inspirational, I need help, and I do not have a choice. I must get up. I must change that diaper and smile at the sunshine filled boy's face. And carry on. Because I believe that if we do not live our life with JOY then evil wins.
And joy, is a part of history too. Far more than we give it credit for. That is why I do what I do. I am a Mom, with a goal of happiness for the future of my family. I know its a big pipe dream to think we will ever rise above the clog of beaurocracy and neediness, but as long as I see that smile it puts wood on my fire.
How do you perceive history. Sandy Hook, CT has become somewhat of an anomoly. And I end this by saying that losing a child or a close family member is horrible. And the pain still feels fresh forever, and prayers are needed. For those who are quietly suffering from what one evil moment in time did to shatter their lives.
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).
Facing the Giants - It's all heart from here Everyday when I wake up, there are giants looming all around me. Waving weapons of responsibility, advocacy, fixing things, bills to paid, phone calls, piles of papers, things to review, appointments to get to, procedures to schedule, earn money$$$, work harder, house is falling apart, kids need clothes, therapy, college, mortgage, utilities, doctors, supplies, medicine, laundry, manage it all giants. Giants each wearing a jersey that says what they are. They intimidate me and make me want to pull the covers over my head. But I have no choice but to face them. There will be a day when the giants become virtually insurmountable and the decision to push will not be an option. We are that way, when we protect a child. Nothing else matters. And when you have a child with special needs, who is incapable of doing anything for themselves for the rest of their life, indirectly that is a giant you have to dance with for the rest of that child's life. This video is not about a highschool football team. It's about the gift of leadership. This coach pushes Brock farther than he ever thought he could possibly go. Because Brock couldn't see, and he just had faith in himself and in his coach. "It burns", "I know it burns!!!".... "It's all heart from here" I feel like life does that to people. People go about a life, that is safe, controlled and comfortable. They have what they need, and they proceed in a routine way. No disabled people, no sick people...just normal life. And then there are the people who face great trials. The birth of a severely disabled child, cancer of a loved one, loss of a child, losing a job and all security, and whatever Giant "Giant" falls upon them. You then put your faith to the test. It's then that you realize the true meaning of "its all heart from here". Blood, sweat, tears, pain, and you just keep on pushing. Putting yourself out on a limb and leaving it all in God's hands you just keep on going. Then you fall down. It's give up time. It's time to just say forget it, I'm too weak, it burns, it hurts too much, I can't do it. And while you lay in your defeat a voice says to you... "Give me your best Julie. This is NOT your best. Get up. Don't stop. It's all heart from here. I'm here for you. I am with you. I love you. I will sustain you. Get up. You are better than this. Don't fall to despair and don't fear, because when you get to the end of this difficult road, it will simply turn into another difficult road. Winding and winding and winding. But I will be here. Don't stop. You will be rewarded. I know it's hard. I know. Don't look at others. Their choices are different. You have no choice. I know you won't stop. So, I take a shower. Drink 3 cups of coffee. Pull my messy hair up in a clip and sit down at my desk, facing those giants. Or sometimes I just ignore them. Or sometimes I just pray for help. Or sometimes I need help. But I don't go back to bed. I don't sob into my pillows until Daniel comes home from school. I make calls to doctors, I call about bills, I negotiate with creditors, I figure out the oil price plan, I order more diapers, I order more medicine, I schedule a 6 month assessment with DSS, and then I go outside to walk my little dog Henry. We practice his commands, and we take a walk. I am definitely not alone. Faith lifts me back up, every time I remember to ask God to please please please lift me up. I can't wait until Daniel gets home from school each day. It's a gift that he's healthy and with me. And it's all heart from here.
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.
This little dog is pretty incredible. Everywhere I go, someone always asks me "what kind of dog is that?" and I say Coton, or Coton de Tulear. And they go "huh? never heard of that". The breed is amazing. Its a somewhat rare breed in the United States, not AKC registered and do not wish to be. They are known for being soft as Cotton. Usually they are white, but sometimes come in other colors such as Henry.
His temperament is very friendly, submissive, and he wants to please. He learns very quickly and he is intuitively aware of the physiological state of his person. We are training him, and someday he will be an official service dog.
He is very very sweet, and sometimes quite spunky...but his intelligence blows my mind.
For now, he is simply growing up and being trained. He is spending time in many places, and with many people and we will work up to more independent time with Daniel.
I never understood why people loved their dogs so much, until I had one. And he is a love.
How did we get this rare little pooch? Well, it's kind of a long story, but the short of it is that a very kind hearted woman in Ohio learned that we were seeking a dog for Daniel that would be a good comfort dog/service dog,.. next thing I know she has donated a pup to Daniel.
On July 23, Thomas and I drove out to Philadelphia and met Henry at the airport
Life has been full of blessings ever since. So next time you hear "Coton De Tulear" you will know what it is...
Today is September 4, 2013. Its lovely outside, clear skies warm sun. A very typical September day.
Sarah is at college in NYC. Thomas is at Middle School. Those two kids have moved along in their normal course, on the way making me a very proud Mom.
Daniel goes to school at a place called STARR. He's been there for years. STARR is basically a classroom for 4 severely disabled kids. It's housed in our Intermediate 5/6 school. And I guess its a good place for him given his situation. But I have days where I wonder if I'm making a mistake not sending him to regular high school.
Today I am home and feeling pretty depressed, and lonely. Henry and the cats are keeping me company. I am going to bring Henry over to Daniel's school to spend some time there. I'm sure that will cheer me up.
Life is so full of "I don't know" and "what if" and sometimes I wonder what if Daniel had not had a deformed brain. He would be a junior in highschool. Probably athletic like his Dad. I don't know.
The sun is making pretty colors through the leaves and here and there I see hint of color. Fall is on its way.
Well, Daniel is 15 almost 16 and I have so many things I wish I could be doing more of for him. Like aqua therapy, maybe horseback riding, maybe going on field trips to see things, maybe a new walker, handsome clothes, a swing that is his size, a bike that we both can ride in....
But this Julie... this Julie is sitting here at this moment feeling kind of sad. I have these headaches that don't go away. My right hip started randomly having bizarre pain and I really honestly just don't feel well. Most of the time. But its not Daniel. It's the stress of the world pressing in on me while I try to care for Daniel. Jeeze... they simply don't give you a break. And while most people just don't care, and turn away. Some people are kind and try to give comfort and care. Most of the time, I feel isolated. Even from my own relationships in my family. It starts to feel like the stress has removed components of love that once were there. Perhaps is just perception.
My children need me to be a strong, kind, supportive, encouraging role model. I don't rule by anger. I don't manage with threats. That will never be my personality. Never has.
But. I am staying right here, in this moment. Where I am at this table typing. I hear my windchimes outside. Two cats and a puppy all sleeping within a few feet of me. My body is full of pain today, and I either feel like sleeping or throwing up or crying. or nothing at all.
Going to bring Henry over to see Daniel at school. He brings joy. Sigh.
Having a special needs child changes the world. Changes your perception of life, and changes people's perception of you. For the Better, for the worse "I don't know". But I do know that the only option is to keep on trying. And Please God, please give me strength. Please, I don't understand why I am in such pain physically and emotionally. I should be the strong one. The role model. The leader.
For today, I am a lady walking a little black puppy named Henry.
