A Different Perspective

I have always been a dreamer. When I became a social worker, I did so because I wanted to make a difference. My goal was to impact the lives of differently-abled children; I wanted each child that I worked with to know that they are not defined by what they cannot do or some obscure medical term. I wanted each child to know that they are cherished and valued. You see, I was born with Cerebral Palsy and walk with crutches.

I can’t lie. Life can be hard and there have certainly been times I have literally been in tears. I know what it’s like to be judged by others and to have to overcome obstacles and stereotypes. I have come to understand that the world is not always fair. Despite my best efforts to blend in and not be singled out for being different, people do indeed judge and at times try to set limits to what they think I can do. And now I’m going to admit something totally crazy, something that may not make sense to anyone at all… My disability, my crutches are a gift.

I have a new job. I love, LOVE my job, it’s my dream job. I now work at Whitestone School for Child Development, a CPSE preschool in Queens, NY. I have always dreamed of working in a preschool because I love children and I have always wanted to use my disability to positively impact others.



I attended a CPSE preschool and know that I am where I am today, in part due to the services and early intervention I received there. While my memory of those days are fuzzy, I remember I loved it! I loved my teacher, Miss Jody (Yes, I still remember her name) and my therapists were also great! I had a lot of friends who were just like me and no one judged me, made fun of me or left me out.

When I entered kindergarten, I attended Henry Viscardi School; a school for the disabled founded by Dr. Henry Viscardi, who also had a disability. I remember seeing him in the hallways and hoping to one day be like him and help others. As I got older and truly understood how much he had done to advance and advocate for the rights of people with disabilities, the more convinced I became that I wanted to be like him and leave a mark.

There’s something that I was not prepared for…being denied opportunities because of my disability. I was raised in a family where I was no different than my siblings. My mother has always been my greatest ally and advocate but she also believed in being honest with me. “You have to work harder and do better because people will judge you” she’d tell me. Followed quickly by, “but you can do anything if you work hard enough.” While the first half of her statement always annoyed me, I always believed she was right, that I could do anything. I also went to amazing schools and had great teachers who also made sure I was never treated differently, so I grew up assuming that all of my dreams would come true as long as I did my best and worked to make my dreams reality. Reality isn’t that simple; people are not always nice. I’ve been on more than one interview where people made it quite obvious that my crutches made them uncomfortable. I quickly learned that my mother was right. It seemed to me that my dream of making a difference would never come true. Every time I thought I’d found the perfect job for me, I’d hit a brick wall. My crutches always seemed to get in the way, be the “elephant in the room.” I had always believed that I could do whatever I wanted and that if I worked hard enough, I could achieve my dreams. Out of my own naiveté I had never really seen my crutches as an issue. I am as independent as I can be and I have never let crutches stop me.

I was beginning to question if I was ever going to be able to make a difference. I was ready to give up on my dream when I got the phone call to come in for an interview. Can I admit I was nervous? I was excited but hesitant. I was convinced I was going to hit another brick wall. Boy, was I shocked when two days after the interview I was offered the job!

You see, I have finally come full circle working at Whitestone School for Child Development. I am finally in a place where people don’t stare at me or refer to me as “the girl with the crutches,” I don’t have to explain myself. I walk into a classroom and all the children shout, “Hi, Laura! Come play!” The children know my name! I may never know how much of a difference I am making in their lives but I certainly hope that they all come to understand that they are amazing and so very capable of achieving their dreams. I hope that in my own way, I am giving back to all of those who gave to me, who helped me get to where I am today. I am truly more grateful than words can ever express! Now do you understand why I say my crutches are a gift? They don’t define me, they are not who I am. It is my hope that when people see me they see the person I am; someone who is truly happy and grateful for the opportunity to positively impact others and just maybe, leave a mark…yes, I still dream big!

Contributed by Laura Nunez

Animal/Pet Therapy

“In an age of research when it is tempting to reduce human emotions to biochemical reactions and to rely heavily on the technology of medicine, it is refreshing to find that a person’s health may be improved prescribing contact with other living things. Members of the health and allied professions must continue to combine resources, work together in the spirit of cooperation, and never forget to ‘cure when possible but comfort always.’ ”
~ Michael J. McCulloch, MD (1981), co-founder of Delta Society, now known as Pet Partners®


Although intuitively known for thousands of years, the benefits of interacting with pets has only been scientifically studied beginning in the latter half of the 20th century. Research began in the 1970’s when visionaries Leo Bustad, a veterinarian, Michael McCulloch, a psychiatrist, his brother William McCulloch, a veterinarian, and several other veterinarians formed The Delta Foundation, now known as Pet Partners. The organization was originally founded to pioneer the scientific study of the health benefits of the human-animal bond.

In part because of the efforts of this organization over the past 36 years, there are now several classifications and uses of domestic animals, many of which can be very helpful for children with special needs.

Service dog
A service dog is one that is specially trained to perform a task or tasks that alleviate an owner/handler’s disability. Individuals who utilize service dogs are protected under the Americans with Disabilities Act to have their dog accompany them into most public places. The ADA no longer recognizes any species other than dogs (or in some cases miniature horses) as service animal.

These amazing dogs can be trained to help children with autism, cognitive disorders, mobility limitations, seizures and to alert someone in the case of a medical emergency. There are hundreds of service animal training organizations across the country, but still there is a high demand in relation to a limited supply of dogs. If you are interested in researching the advantages of a service dog, it is never too soon to start the process. Pet Partners has an extensive online directory of service dog trainers: www.petpartners.org/servicedogtrainerdirectory. This directory can be searched by state and disability training type. Please note that these organizations are not necessarily recommended by Pet Partners; their inclusion is meant only as a resource. You are encouraged to read this section of their website for further information and consumer considerations: www.petpartners.org/ConsumerInfo.

Emotional Support Animal
Providing comfort and security, emotional support animals (ESAs) can be very valuable to a family with a special needs child. Although they may also perform some type of “work” for their owner, it is mostly the pet’s mere presence alone that is beneficial. “Unconditional love,” despite the limitations or appearance of their owners, is what most people describe as the biggest benefit gained from the bonds with these animals. People who own ESAs are protected under the Fair Housing Act to keep these animals in a public housing situation, but the property manager has the right to ask for documentation from a health care provider that the animal(s) is necessary for the person’s health and well-being. As with the ADA, however, the Fair Housing Act requires that the animal does not alter the environment for others; s/he must be held on a leash in public areas, must be well-controlled, clean and quiet. For more information about the Fair Housing Act as it relates to assistance animals, please visit http://www.hud.gov/offices/pih/programs/ph/rhiip/phguidebooknew.pdf, section 16.1.

Companion Animal or Pet
Although there is no legal definition for these types of animals, research has proven the therapeutic effects of having a pet in the household. For example:

• Owning a pet enhances a child’s self-esteem.


• Having pets teaches children responsibility and respect towards other living beings.


• Children owning a pet are more involved in activities such as sports, hobbies, clubs or chores.

Pet Partners’ website has a vast library of articles, abstracts, book references, etc. detailing the beneficial effects of the human-animal bond: https://petpartners.org/Health_Benefits_for_Children.

Animal-Assisted Therapy
Animal-Assisted Therapy (AAT) is a relatively recent treatment adjunct for many healthcare professions. AAT can be a significant part of treatment for many people who are physically, socially, emotionally or cognitively challenged. These sessions are more than just “fun” time with an animal; they are goal-oriented, therapist-guided visits with specific desired progress and outcomes. The benefits of AAT are many:

• Improved fine motor skills


• Improved balance


• Lowered blood pressure and heart rate


• Increased verbal interaction


• Increased attention


• Reduced anxiety


• Increased vocabulary


• Improved memory

To find a professional that incorporates AAT into his/her practice, please visit www.petpartners.org/aatprofessionals.

Animal-Assisted Activities
Visiting animal programs are increasingly popular in hospitals, medical centers, nursing homes, schools and other facilities. Pet Partners registers appropriate pets with their owners as therapy animal teams after the “human end of the leash” passes a comprehensive training program and the team passes an evaluation performed by a licensed Pet Partners Team Evaluator.

In institutions where animals are not usually allowed, these visits provide a welcome respite for patients from painful treatments, loneliness and boredom. For children with learning disorders, the presence of a therapy animal can create a comfortable atmosphere where the children exhibit more confidence and readiness to learn.

Pet Partners is the only national therapy animal organization that registers species other than dogs with their owners to provide therapeutic visits to patients in hospitals, nursing homes, schools, etc. Cats, horses, guinea pigs and birds are some of the other animals that are welcome.

To learn more about Pet Partners visit www.petpartners.org or watch their promotional video...

http://www.youtube.com/watch?v=BCXXxfVCA6Y&width=500&height=350&autoplay=0&rel=0

Contributed by Paula Scott-Ginn- Marketing Coordinator / Service Animal Resources with Petpartners

The Feldenkrais Method: Movement in Mind

In a comfortable, airy room strewn with exercise mats, a Feldenkrais teacher guides her students verbally, as they move their bodies slowly and gently. She invites them to explore a sequence of easy movements, and then to rest, noticing whether one of their legs feels longer than the other. Then, she asks them to notice whether it feels easier when they turn toward the left, or the right. Each student pays attention to his or her own experience, tilting, turning, or gently lengthening an arm or a leg. These movements are extremely simple, but unlike most other forms of exercise, each movement is also packed with valuable neurological information. The movements in a Feldenkrais exercise are functionally based and meaningful, and provide the brain with a therapeutic opportunity in which it can assist the body. When the exercise is finished, the students stand up and walk around the room to explore how they are now feeling. Many will report feeling refreshed and capable, in ways they had long forgotten.

Across town, an 11 year old boy, who broke two ribs while playing sports six months ago, lies down, fully dressed on a low table for an individual Feldenkrais treatment. Though his ribs have technically “healed”, he complains that he can't breathe deeply the way he used to. The practitioner quietly uses gentle touch along the child’s spine to help him regain confidence in the flexibility and function of his entire upper torso. The practitioner does not focus on the youngster's injury, pathology, or diagnosis. Instead, he creates possibilities for improvement by facilitating a natural process of sensory motor learning in the child's brain. As the child takes his first deep breath in months, he smiles with relief.

The exercise class and the private session are two forms of a somatic therapy called the Feldenkrais Method. Offering abroad range of benefits for people of all ages and abilities, this unusual technique uses the power of the brain to help the body.

Often, necessity is the mother of invention. The Feldenkrais Method is one such case, created by a physicist and engineer named Moshe Feldenkrais when he lost the ability to use his legs after a series of
serious knee injuries. Determined to find a solution, he applied his understanding of physics, motor development, biomechanics, psychology, and martial arts, and not only restored his ability to walk,
but also developed the work for which he is known today. Over and over again, Feldenkrais found that given the right sort of opportunity, the brain can improve the body's comfort and function. Feldenkrais created exercises to help every part of the body, and devised a mode of hands on treatment rooted in the fact that when the brain is offered new options for our posture and movement, it will naturally choose better ones on our body's behalf. Simple movements done with basic home grown awareness, Feldenkrais discovered, are the best way to communicate effectively with the brain and nervous system.

Instead of focusing on symptoms, the Feldenkrais Method works by improving the body’s underlying neuromuscular and skeletal organization. Although we know that body and mind are exquisitely intertwined, few of us understand the profound connection between our habitual posture and our psychological habit patterns. We assume that we simply “are” the way we are, and while caught in a web of unconscious patterns, believe that we have only one way of doing things. What the Feldenkrais Method does, is to restore our sense of having options and choices. Georgetown University neuroscientist Karl Pribram once said, “Feldenkrais is not just pushing muscles around, but changing things in the brain itself.” With better muscular and skeletal organization, many aspects of our physical comfort and functioning can change and improve. By engaging the brain’s plasticity, or ability to change, Feldenkrais gives us an opportunity to change even our most engrained habits of posture and movement.

The Feldenkrais Method is available in two complimentary forms. The exercises, also called Awareness Through Movement lessons, are presented verbally to a group, or can be done independently at home. Feldenkrais treatment sessions, also called Functional Integration lessons, involve a hands on approach, as a practitioner individualizes the work. Both forms of the Feldenkrais Method are safe, enjoyable, and can be immediately effective.

As the Feldenkrais Method steadily gains recognition, people are increasingly turning to it for help with a wide range of issues. Some people use it to speed their recovery from injury, or because they wish
to avoid the physical limitations commonly associated with aging. Others use it to reduce tension, or to improve athletic abilities. It is being embraced by performing artists all over the world, by parents of
children with developmental issues, and people dealing with the aches caused by long days spent sitting in front of computer screens.

The famous anthropologist, Margaret Mead, once said that, “the Feldenkrais Method is the most sophisticated and effective method I have seen for the prevention and reversal of deterioration of function.” Well worth exploring, the Feldenkrais Method offers each person an opportunity in which they can experience their potential for improvement. Sometimes, all we need to do is remember what feeling better feels like.

If you would like to know more about this type of therapy, you may also be interested in How We Can Be More Effective Agents of Transformation and the Importance of Awareness Through Movement or any of the other articles available by David Zemach-Bersin.

Contributed by David Zemach-Bersin

Whole Body Medicines for Special Kids

One of the major benefits of alternative medical practices is their actualization of methods that incorporate the whole body and all of its systems into diagnostic criteria and treatment methods. When looking at the body as ONE integrated system, rather than it’s component parts, patterns of illness and imbalance emerge. These patterns are unique to each child, but are part of a larger ordered pattern of body processes. Just as a farmer would look to find the source of disease if his crops began to fail rather than simply pulling out the plants that are ill, alternative medicines is guided by the understanding that the parts of the body work together and rely on one another to maintain a healthy environment.

CranioSacral Therapy is one such “whole body medicine”. It is so named, because it relies on the subtle movement of the cerebral spinal fluid (CSF) housed between the cranium (head) and the sacrum (tail bone). The influx of CSF into and out of the cranial base causes a gentle flexion and extension of the whole body around the spinal chord as the CSF pressure increases and decreases in a wave-like motion. Because the entire body moves with the rhythm of the CSF, CranioSacral Therapists can feel areas of restriction in the body’s movements. Treatment consists of the gentle pseudo-energetic application of pressure to areas of restriction to remove any constraint. Like taking the tension out of an overstretched rubber band or the emotional release that comes with a well-timed hug, tissues in the body begin to unwind, eliminating restriction and improving local function.

[caption id="attachment_4808" align="alignleft" width="250"] Image provided by Bubblews[/caption]

An older and more well-known “whole body medicine” is Chinese Medicine. This ancient healing art consists of acupuncture, acupressure, cupping, moxibustion, herbs, dietary therapy, energetic healing methods such as qi gong and tai chi, as well as, the more modern techniques of electric stimulation and laser therapy. The foundation of Chinese Medicine is that the body is one integrated operating system in which the internal organs support and control the functional activities of the other organs and the body as a whole. The methods used in Chinese Medicine are very gentle and work with the body’s natural processes to help strengthen and align bodily systems.

Both of these systems of medicine can be extraordinarily helpful to kids with special needs. Dealing with the often immense health issues that come with certain disabilities, it is important to make sure that the body is functioning at its optimal capacity, so healing can occur wherever possible. CranioSacral Therapy and Chinese Medicine work with the body to ensure that it is working at its best, supporting growth and encouraging function.

For more information, or if you would like to give these therapies a try, contact Bee Well Kids in Los Angles and/or Las Vegas, or search for a Chinese Medicine provider near you.

Contributed by Naomi Richman

Music Therapy

As a traveling music therapist, I spend all day driving through the Texas sun, hauling guitars, drums, and tambourines from house to house, but still the hardest part about my job is answering, "What is music therapy?". The American Music Therapy Association (AMTA) defines music therapy as "the clinical and evidence-based use of music interventions to accomplish individualized goals within a therapeutic relationship by a credentialed professional who has completed an approved music therapy program".

...Am I watching an episode of ABC's Lost because I feel like I have more questions than answers after reading that definition! Don't worry, because I am here to break down that definition and give you as many answers as possible about the field in which I work.

First things first, what do music therapists do? My go-to answer for this question is to compare it to something everyone knows. Music therapists are similar to physical therapists, speech therapists and/or occupational therapists in that we are working with clients to improve their quality of life. The areas mainly focused on are physical, emotional, cognitive, and social needs. Through music therapy, clients learn social and communication skills; they learn how to appropriately express themselves through improved emotional processing; they can increase fine and gross motor skills; even stress and pain management can be learned through music therapy treatment. We are not teaching people how to play instruments, but rather using music as our therapeutic medium to increase those areas that are deficient in the clients lives. This would be the "clinical use of music interventions to accomplish individualized goals" of the definition.

The second most common question is who can benefit from music therapy? The short answer: anyone! Really, it's true. Music therapists across the US and throughout the world work with clients in all types of settings and with all types of needs, ranging from dementia to mothers in labor. AMTA has an excellent definition of who can benefit from music therapy. They say "Children, adolescents, adults, and the elderly with mental health needs, developmental and learning disabilities, Alzheimer's disease and other aging related conditions, substance abuse problems, brain injuries, physical disabilities, and acute and chronic pain, including mothers in labor all benefit from music therapy". So going back to the short answer, anyone with a general desire and enjoyment of music can benefit from music therapy treatment. With that being said, there is a common misconception that you have to be musical or have "musical talent" to benefit from music therapy, but that is not the case. Again, we are not teaching music, we are using the therapeutic properties of music to increase skill areas.

Once someone learns about music therapy and what we as therapists do, the last question is usually where do you work? This is different for every therapist. I myself work through the Medicaid waiver program - CLASS - providing one on one, in-home services for children and adolescents with developmental and learning disabilities. I have also been contracted through school districts here in Texas to work with a few children with developmental and/or learning disabilities whose parents have requested music therapy to be incorporated into their child's Individual Education Plan (IEP). And finally because I enjoy working with the elderly, I reached out to some local rehabilitation centers and am contracted through four nursing homes in the Austin, TX area to provide monthly group sessions for elderly dealing with dementia and Alzheimer's disease. This may seem like a crazy set up, but I'm pretty sure my situation is the exception. Other therapists have private practices where they have a studio and all their clients come to them. Still other full time therapists work solely in hospitals, one school district, a nursing home, or a psychiatric facility.

Going back to that initial definition, the "credentialed professional" is indeed the music therapist. We, as certified music therapists, do have to obtain at least a four year degree in music therapy. Most of us leave college with a bachelor of science in music therapy. We are trained heavily in music theory and music therapy as well as biology, psychology, social and behavioral sciences, and general studies. After we have completed all the course work, we are required to complete an AMTA approved internship usually lasting 6-9 months depending on when the student completes the required 1200 hours of clinical experience. Lastly, we are required to pass a board certification exam to become a board-certified music therapist (MT-BC).

Throughout this article, I have continuously referenced the national association, AMTA because they do a fantastic job informing people who we are and what we do as a profession. If you have any remaining questions about music therapy, www.musictherapy.org is a great place to start. You can find therapists in your area, see where they are working and whether or not music therapy is funded through a waiver program or an insurance provider. I also have a website if you would like to know more about me or are in Austin and want to learn more about what I do in the area. Roads of Connection Music Therapy is where you can find my information. It's common for people to still have questions about our field, don't hesitate to contact a music therapist in your area to gain more insight.


Contributed by Danielle Baumgartner, MT-BC

Parking

I had a very weird thing happen today and thought I would share. First a little back story. We got a disabled parking placard for our daughter, Casey, MANY years ago (I think she was only 4-6 months old when we got our first one). Between the amount of equipment we have to carry for her, and now her being in a wheelchair, accessible parking makes sense.

When we first got it we had a placard that hung from the rear-view mirror. This is pretty common. There were details with the application as well as with the placard explaining that it is only legal to use accessible parking with the person named on the placard in the vehicle. We had to include medical letters and all kinds of stuff.

When we purchased a modified van with the ramp we changed from the placard to a disabled plate, but the same laws apply. When I have Casey in the car or my grandpa (as he has his own placard too) I will use the spots. Without either of them in the car, I park in non-accessible spots. First, it's the law, but even if it were not the law I would still do this.

There have been many times I have gone somewhere with Casey and not been able to find a spot. When this happens we either forgo the outing all together, circle until one opens up (possibly making us late for whatever we are doing), or I have to drop her and her nurse off at the door while I then go park and rush back to join them. When spots are not available it makes that outing very stressful and at times you could even say there is some added risk to her health (I won't get into all of those reasons, but with a compromised immune system and intolerance to heat and allergens you can probably figure out some of the risk). That being said, I know there are many other people in the same situation. So, if I do not need the accessible spot I don't use it so others that do need it may.

Back to today... I went to run some errands, leaving Casey at home with her nurse. One of the stops I made was the post office (or postal station). There were 2 spots up front, then another 8 or so across the way. The 2 up front were 1 accessible spot and 1 general parking. It was just me, so I parked in the general parking spot and went inside. While I was filling out my papers a man came in. He was very angry and yelling at the attendants about something. I just minded my own business while this was happening (I wish I had been paying attention). He then stormed out and the attendants were talking to each other. I heard one say something to the effect of "What was he expecting, you don't have to park in the accessible spot just because you can..." This is when I realized he was angry and yelling about me. WTH!! I asked the attendants exactly what he was complaining about to find out that he was angry that he had to walk across the way (like 30 feet) because there was a disabled vehicle parked in the non-disable spot. I was so caught off guard by this, and really mad. I explained the law to attendants and said "as you can see, I do not have my disabled passenger with me." I asked if the man was still around as I would LOVE to educate him on the laws as well as a few others things. I guess it is a good thing he had already left. I would have tore into him if he was still there.

I'm still really angry about the entire situation though and thought I would share this story with all of you. Hopefully someone will eventually tell him how it actually works. This is the opposite of the common issues you hear and see with accessible spots. Usually it is people parking there to "just run in" when they are not legally parked at all. I hear a lot of stories about people parking (legally) in these spots to only get yelled at by other drivers. They may not have a visible disability and so others assume that they have illegally gotten a placard or plates somehow. If you are reading this, please remember that not all disabilities are visible. There are many people that need to have quick access to their vehicles for so many reasons. Also, there are many people with mitochondrial disorders (or many other disorders) that may be able to walk when they are leaving the car, but their muscles give out before they can make it back. You may see what appears to be a healthy person entering a store, but they may return in a wheelchair. Don't assume you know better. If they have a placard or plates, they had to provide medical proof that they need the spot. Occasionally you will have people abuse it and park in the spot without their disabled passenger. Sadly there is nothing we can do about these people. Hopefully they will need a spot at some point and not find one to then realize that they should not abuse their permit.

Rant over, I just really wanted to get that off my chest. Lets all follow the traffic laws and try to be kind to one another.

Angels

2014

Jonathan Rodriguez
August 4, 2014
There is not a day I don't think about him and his big smile despite all of his pain. Mommy loves you to the moon.

Violet Ai Xin Hasenmyer
8-1/2 months old
April 12, 2014
Our first born and the first of our twins; you are our perfect child. Not a day goes by that we don't think fondly of you and miss you tremendously. Your spirit and strength inspire us daily. Diagnosis at 6 weeks old - Prader-Willi Syndrome.

2013

Stephen Benjamin Shifferly
4 years old
December 1, 2013
He is now our Advent Angel. Leukodystrophy claimed another life, but he kept his
smile to the very end.

Victoria Sofia Rodriguez Baez
10 months old
August 1st 2013
You will always be in our hearts and you only gain your wings because you were already an angel on earth. We miss you so much!

Edward Richard Clyde Higgins (EJ)
2 years old
October 5, 2013
Born 28/1/2011. At 27 week 1000g. Grew angel wings 10/5/2013. Disability -Ceribal palsy. Made the most of life, Our little champion

Shelby Anne Dolinsek
18 years old
June 9th, 2013
In my heart forever

Kaitlyn Lee Mincey
10 years old
April 24, 2013
For a baby who wasn't supposed to live more than 15 minutes off the breathing machine, Kaitlyn was almost 10 years old. She was an angel on earth and now is a angel in heaven. We miss her more and more everyday!! She is in heaven walking and talking and watching down on us ♥

Isaac Michael Huether
10 months
March 25, 2013
Remained undiagnosed. Isaac, you have taught us so much, we miss and love you baby boy. Love, Mommy, Daddy, Sissy (who is due in July) and Grandma

Misty May Mondragon
27 years
March 21, 2013
Miracle after miracle now you can run, dance and sing with the angels, we love you my precious baby girl.

Emma Ryleigh McPherson
3 months
March 7, 2013
Our precious twin baby girl. Always in our thoughts and forever loved and missed.

Noah Matthew James
March 7, 2013
weighing 2 lbs 7 oz. Was 27 1/2 weeks prego. My sweet little guy!

Peyton Michael Joseph Sandlin
10 years
March 2, 2013.
Only expected to live months, far surpassed all expectations in his 10 years. Peyt you are and always will be my miracle, my heart, and my soul... I will see you again when God gives you back to me...

Hayden Alexander Barnes
6 years and 340 days old
January 16, 2013
Forever united with Quad(ruplet) Power to his 2 sisters and brother. Always on our minds and forever in our hearts.

2012

James Clayton Arnold Henry "JC"
Age 21.
December 12, 2012
Love you Buddy

Selah Gracelynn Rose Fessenden
6 months
December 10, 2012
Born to soon, gone to soon. Forever 6mo.

Addiason Ann Cannon
2.5 years
November 27, 2012
She was a true blessing from God and we were very blessed to have been chosen to be her parents !!! She was always smiling , happy and loved everyone .......

Parker Lee Reynolds
2.5 years
October 20, 2012
The world is a brighter place for having Parker in it. She touched lives daily and still continues to through The Parker Lee Project. May her spirit and legacy live on forever.

Josiah James Lorenzini
3 years
October 18, 2012
Josiah passed away at the age of 3 from Menkes Disease. He was the stongest little guy and forever my hero.

Jeremiah A. Summers
6 months
July 15, 2012.
a good baby now an angel watchin over his big brother jawuan and me.

Kale Evan Kirk
45 days old
June 21, 2012
We miss and love you so much, our warrior, fighter, rock, and reason for continuing.

Jeremiah A. Summers
6 months
July 15. 2012
a good baby now an angel watchin over his big brother jawuan and me.

Shelby Anne Dolinsek
18 years
June 9, 2012
In my heart forever

Riley James McCoy
4 1/2 years
March 19, 2012
We miss you baby boy! Love, mommy, daddy, Jesse, and Evan.

2011

Daniel Jonathon Flinton
4 years
November 11, 2011
Our little soldier, who taught us so much, we feel you with us everyday.

Blake Mittelstaedt
17 years
August 18, 2011
We were given the gift of 17 precious years with you! Thank you for
all the life lessons you taught us, and I can't wait till I get
another "hugger" from you! I love you and miss you buddy!

Collin William Neese
6 years (almost 7)
March 23, 2011
Our "Little Soldier" and now our "Little Angel" He was always smiling and giving. He was always thinking of others before himself. He passed away of Neuroblastoma cancer and SOS. Mommy loves and misses you!

Kaysen Preston Zeller
February 10, 2011
Identical twin brother and guardian angel of Tysen.

2010

Megan Kate Gawalek
13 years
November 9, 2010
She knew few words, but could Always sing like an angel.

Amber Margaret Dougherty
Almost 4 years old
September 2, 2010

Marin Paige Mobley
1 month
August 8, 2010
Two of God's greatest gifts and most beautiful Angels in Heaven.

2009

Addysen Kay TerBeest
Just a few hours
December 1, 2009
Just a few hours old was called to heaven. Miss u everyday baby girl!

Jordan Anthony Fuhrman
15 years ( 2weeks shy of 16)
November 18, 2009
He loved God, church, music, Disney and his family and friends. His favorite show was scooby doo.

Jayden Brice Ross
1 month old
June 26, 2009
My precious twin boys! Miss u boys so much!

Aila Teagan Mobley
7 months
June 6, 2009
Two of God's greatest gifts and most beautiful Angels in Heaven.

Brayden Joshua Ross
3 days old
May 28, 2009
My precious twin boys! Miss u boys so much!

2008

Joshua Timothy Theriault
13 years
December 30th, 2008
He may not have been able to talk but he sure made a huge impact on many people!

Evy Lee Anne Billman
16 years
February 23, 2008
She became my miracle on Easter Sunday 1999 after a horrible car accident. She became my angel Feb 23, 2008. We love and miss you always!

Zephyrus Atiyyah McCartney
5 1/2 years old
February 8, 2008
We love you so much! Until we meet again, you will stay in our hearts. Love, Mommy, Mama, Coltrane, Sullivan, Laila & Judah

2007

Christian Joseph Matthews
5 months old
August 28, 2007
Our beloved twin son. He was a sweet, precious baby, and his twin brother and the rest of us still miss him so much.

Cameron Paul Croteau
3 years
July 26,2007
Forever 3 yrs & 3 mos old.

2005

Kirstyn Renee' Samuell
5 Hours
November 2, 2005
Lives forever in our hearts.

2001

Hailey Hope Carriere
1 month
March 17, 2001
we see you every day in your twin sister you are free every year we send up a birthday balloon with a note sending love your way

1997

Kaleb John Pann
May 13, 1997
he is missed everyday n especially by his twin brother Colton who is here with us.. 16 is right around the corner for Colton. I always wondered how it would have been if kaleb lived..he is our angel n I miss him everyday. Luv u baby boy rip kaleb...

1996

Angel Rae Nichols
November 1, 1996
I held you in my arms for a short time, now your in the arms of Jesus.

1995

Kayleigh Roddy
22 months
July 25, 1995
we all love and miss you everyday

1993

Benjamin Philip Sokolowski
born sleeping
August 20, 1993
Born 12:59 am.1lb 12oz..had light brown hair..i loved hearing your heartbeat and kicks for the magical 22 weeks. years later i still wish you were here with me.

1988

Annette
2 Months
October 03, 1989
My heart goes out to all the Mommies and everything that they may be going through.

1988

Christopher Lee Seymour
3 days
September 7, 1988
He will always be in our hearts and we will never forget him, God saw that he was way to small to fight the battle that he was facing and so he made him our little angel ...We love and miss you Christopher ...Mom and Dad

1986

Melissa
3 Months
January 19, 1986
Congestive Heart Failure. I want all the Mommies to know that each and every day I am praying for you and your Special One.

Roy Meehan
10 years
December 28, 1986
two beautiful babies who fought so hard to stay here with me x

1984

Garry Mikel Barnes
just under 2 minutes
April 28, 1984
I wish I had gotten to know my baby boy's personality and been able to shower him in hugs and kisses...

Anthony
2 Months
October 05, 1984
Born w/ 1 lungs & only 1 kidney.

1979

John Joseph Lochner Jr.
1 year
June 1st, 1979
Forever in our hearts my baby.

1978

Rebecca Meehan
May 17, 1978
two beautiful babies who fought so hard to stay here with me x

1977

David Lee Kroger
October 24, 1977
I miss you every day.

What is Home Health?

Short answer –
Home Health is ANY medical service provided in one’s home. Home Health can be all types of things. Therapy services, nursing services, aids and attendants and hospice are some common forms of home health.

Therapy Services

Therapy services done in the home are pretty common, especially with children under 3 (still in some sort of early intervention program). Home therapy services can be physical, occupational, speech, vision, development and even play therapy.

Nursing Services

In home nursing services are typically what people think of when they hear the term “Home Health.” Nursing services done in the home vary from patient to patient.

There are different levels of nursing as well. Licensed Vocational Nurse (LVN) or Licensed Practical Nurse (LPN) is the first level. A LVN can provide most at home care. In most areas LVNs are not able to start an IV and they are not licensed to write the Plan of Care (POC). The next level of nursing is Registered Nurse (RN) or Bachelors Science Nursing (BSN). An RN can do all of the things an LVN can, with the addition of IVs and writing the POC. The next level is Nurse Practitioner (NP). An NP can do all that an RN can do. In addition, an NP can also write orders and prescriptions and see patients.

• The most basic form of home nursing is home visits. Home visits are when a nurse comes to the patient’s home and basically just checks in. They take vitals, check that the patient has been getting their medications, and visits with the the family to see if there are any medical needs not being met, questions that need to be answered, or if there is anything that the family needs help doing. Some home visits will include help with some chores around the house. The nurse may help with cooking, cleaning, or even running some errands. Home visits may occur daily, weekly or even monthly. The schedule is determined based on the patient’s needs and doctor recommendations.


• Another form of home nursing is Private Duty Nursing (PDN) or Skilled Nursing. Private Duty Nursing is a little more involved than home visits. Instead of the nurse checking in on the family, the nurse is scheduled for a shift at the patient’s home. PDN can be as few as 4 hours a week to 168 hours a week (24 hours a day- 7 days a week). The number of hours that are approved will depend on child’s medical needs, the doctors’ recommendations and the individual family’s ability to care for their child.


• Respite is another use of home nursing. Respite can often be confused with PDN as often it is the same nurses filling the role. Respite is a little different however. PDN can be used when the primary caregiver is working, at school, sleeping, or tending to daily activities. Respite is supposed to be used to provide the primary caregiver with a break. Respite in many states can NOT be used if the primary caregiver is at work or school. Each respite provider and state will have their own guidelines. The best way to think of respite care is to ask yourself, will the primary caregiver get some respite (a break) during this time? If they chose to use their break to clean the house or go to the store, thats up to them, but are they getting a break?

Some nursing agencies offer all types of nursing, while others may only offer one. In addition, some agencies serve only infants and children (pediatrics), some only adults, and some cover the entire population. Each agency is different. It is recommended that before selecting an agency for your home health needs that you research the areas they cover and determine who will best be suited to fit your needs.

Aids & Attendants

On occasion a patient will need help, but may not medically qualify for nursing services. In this case, a family usually relies on aids and attendants. Unlike nursing that requires a license, aids and attendants do not require any type of certification. Aids are typically used to help with Assisted Daily Living (ADL) skills and tasks and administer some medications.

Hospice

Hospice can be found in some nursing agencies or in hospice agencies. Hospice combines Private Duty Nursing with pain management, family counsel, and palliative home care. Hospice used to only refer to patients at the end of life. However, with medical advances it is not uncommon for people to move in and out of hospice programs.

Questions to Ask When Choosing Home Nursing Care

• Will the nurses assigned to my child’s care all have pediatric nursing experience? What is the skill level I can expect from assigned nurses?


• Are the nursing hours scheduled according to the needs of my child and my family? How much input do I have regarding the scheduling of hours? Note: Most nursing shifts are based on the timing of the child’s skilled care needs.


• Does the company guarantee shift coverage? Will I be able to have the nurses that I want? Note: Nursing is usually not a guarantee and there may be unfilled shifts. Therefore, it is important for families to train as many people as possible in your child’s care. Hospital nursing staff or the nursing agency can provide training for family members and friends.


• How long will my insurance company / Medicaid pay for skilled nurses?


• Who is available during and after business hours should I have questions or concerns?


• What happens if I do not want a nurse to return to my home because of personality conflict or problems with the nursing care?


• Will I be expected to train nurses in the care of my child or do the nurses familiar with the care do that?


• Will the nurse be able to accompany my child to physician appointments?


• Will my child be assigned a primary nurse, or do nurses rotate and if so how often?


• How do nurses communicate with each other about my child’s health status and the nursing care goals?


• How will my family’s privacy be maintained?

Questions provided by: Cincinnati Children’s Hospital Medical Center’s Special Needs Resource Directory: Home Healthcare.

What is Cerebral Palsy (CP)?

Before we get started, a little about myself.  I am NOT a doctor, nor am I a trained medical professional in any way.  I am a mom.  My daughter, Casey, has very complex medical needs.  I joke with other moms of children with complex needs that not only should we all be able to pass the medical tests, but many of us are rewriting the medical books every day.  That being said, I want to help explain Cerebral Palsy (CP) in mom terms.

Take a second and think about the flu.  Every year the CDC is busy working to come up with a new vaccine for the current strand of flu.  There is not a single vaccine that can be reused each year simply because there are many different types of flu.  You can think of CP the same way.  There is not one treatment option as the term CP is very general and can apply to many different things.

According to CerebralPalsy.org CP is defined as:

While cerebral palsy (pronounced seh-ree-brel pawl-zee) is a blanket term commonly referred to as “CP” and described by loss or impairment of motor function, cerebral palsy is actually caused by brain damage. The brain damage is caused by brain injury or abnormal development of the brain that occurs while a child’s brain is still developing — before birth, during birth, or immediately after birth.

Cerebral palsy affects body movement, muscle control, muscle coordination, muscle tone, reflex, posture and balance. It can also impact fine motor skills, gross motor skills and oral motor functioning.

Many people hear the term CP and immediately picture someone sitting in a wheelchair, or struggling to walk with braces and canes.  Sure, those images may be forms of CP, but there is much more to it.  Some people with CP can function without the need for these aids at all.  For some, CP, is not always even present, it may appear as twitching, tremors, or involuntary movements that come and go.

Generally when people are diagnosed with CP they are classified as hyper or hypo tonic.  Hypertonic refers to muscles that are very active, usually making them appear stiff or flexed.  It’s easy to remember this if you think of a term we have all heard many times, hyperactive.  We all know when we hear hyperactive it is usually referring to a child that is always going.  It’s the same thing, hyper (always going) tonic (referring to muscle tone).  Hypotonic refers to muscles that are generally flacid and inactive.  You can remember this by thinking of hypoallergenic.  I live in Austin, Texas (a mecca for allergies).  Many of us search high and low for hypoallergenic products.  Hypo means without or non-reacting.

Terms such as Rigidity, Spasticity and Dystonia are also commonly used to help classify CP.  Rigid, spastic and dystonia are all ways of saying that muscles are stiff (all forms of hypertonic CP).  These three terms are not as easily differentiated as hyper and hypo.  The main thing that differs with these terms is how the stiff muscles react to pressure.  Imagine bending a stiff knee.  When you apply the pressure the knee begins to bend.  In some cases you can get it to a point, then extend it back to the beginning point.  After extension it may be easier to bend on your next attempt, getting loser and easier with each pass.  However, when the motion is stopped the knee will return to its stiff locked position.  This example would be a spastic muscle.  Now picture the same knee.  However, it does not get easier with each pass.  Instead the pressure required to bend and extend the knee remain the same.  When the pressure is stopped the knee remains in the position last met.  This example would be a rigid muscle.  Now picture the knee one more time.  This time as you are trying to bend the knee the opposite leg may start to twitch or the child may arch their spine in response to the pressure on the knee.  This would be an example of dystonia.  Of course there is a LOT more to these different diagnosis.  If you want to know more about how these differ, there is a lot of content online or you can always ask your doctor.

While hypertonic and hypotonic as well as how these muscles react are all part of your CP diagnosis, the muscles affected also contribute to the diagnosis.  Many of us have likely heard the terms quadriplegic and paraplegic.  Quad is four and para is two.  Quadriplegic refers to all four limbs (arms and legs) being affected while paraplegic refers to two limbs (usually the legs, but it can be the right or left side of the body).  The term plegia means paralysis.  This can be a little misleading though.  Some kids are diagnosed with quadroplegia CP and they are not what most of us would think of as having paralysis.  Instead think of paralysis, when referring to CP, as not having full control of a limb or limited to no purposeful movement.  Some children have more manageable CP that affects a smaller muscle group, or is not consistent.  Each child’s CP diagnosis will be unique and may or may not include some of the common terms and classifications I am describing in this article.  Just like there are too many strands of flu to list them all out, there are too many ways that CP affects a child.

The brain is a very mysterious and powerful organ.  Someone once told me that we know more about the brain than any other organ, yet we still can’t even begin to understand it.  We can create synthetic hearts, we can replace almost all other areas of our body.  When it comes to the brain however we still have so much to learn.  CP is a condition of the brain.  The doctors told us when my daughter was first diagnosed that the brain itself is in tact, but the wires are kinked, crossed, missing and flawed.  Her brain may be telling her body to bend her knee, but her body instead flexes every muscle from head to toe.  Conditions of the brain, such as CP, have been studied and are much more understood today than they were even a year ago.  Being that the brain is still very mysterious.  There is not a cure, there is not a prevention, and each CP diagnosis is unique.

There are a few standard treatments for CP.  There is a general treatment plan for hypertonic and another for hypotonic muscles.  Each of these treatment plans is a starting point.  For some people the standard treatments are enough.  However, for many they add to their treatment plan, and for some the standard treatment plans provide no relief or benefit at all.  There are a few off label (not using a drug as it was originally intended) treatments that have been successful with CP.

Range of motion (ROM) is usually the first thing suggested for a child suspected to have CP.  There is active and passive exercises that can be done.  ROM is basically bending and extending the different joints throughout the body.  ROM can help to prevent stiff muscles from getting stiffer and can help to strengthen floppy muscles.  Any physical or occupational therapist can show you some exercises to do with your child if you are interested in doing some ROM.  ***ROM is used for many other reasons as well.  If your medical team suggest ROM it does not mean that a CP diagnosis in coming.

For many children a doctor (usually an orthopedic doctor) will suggest physical, occupational and/or speech therapy.  The therapist will work to relax and/or strengthen your child’s affected muscles.

In addition to exercise, there are many chemical interventions (medications) that are used.  The most common is Baclofen.  Baclofen is intended to stop or interrupt the signal from the brain to the muscle.  If the medication works as designed it can help to reduce tone dramatically.  Some people that see good results with this medication will have a pump surgically placed to administer the medication directly into their spine.  It is strongly recommended to try this drug orally (or through a feeding tube) or sublingually (under the tongue) before getting the pump.  There are many other drugs in the same class as Baclofen that can be tried if Baclofen does not work.  There are many seizure drugs and anti anxiety medications that are often tried off label to help with CP as well (clonazepam, dantrium, onfi).

Some patients try injected treatments for CP.  Botox injections are pretty common.  A doctor can inject the stiff muscle groups with Botox.  Botox is a controlled form of Botulism and it is designed to temporarily kill a muscles ability to contract.  For some patients that do not see results with Botox, Lidocaine is sometimes suggested.  Lidocaine is temporary just like Botox, but instead of stopping the ability to contract, Lidocaine numbs the area and puts the muscle to sleep so that the contraction signal is not received.

Surgery is sometime suggested as an option for CP.  Some surgeons can cut or lengthen muscles to help relax them and provide relief.  With all medications, injections, therapy treatments and surgeries there are potential risks and side effects.  It is up to each of us to weigh the pros and cons and determine what is best for our child.

There are some children that try all of the treatments (on and off label) and nothing helps.  It can be very defeating to try one after another and not see any benefit.  Each year new medications are being created and the medical community is learning more about the brain every day.  You may not have an effective treatment today, but there may be one just around the corner.

I have heard many parents say that their child is too young to be diagnosed with CP.  This is not entirely true.  Many doctors may wait on giving the official diagnosis, but it can be detected and diagnosed very early.  There are some insurance companies that require the CP diagnosis in order to get certain treatments covered.  A lot of infants/toddlers get these treatments through ECI programs and do not need the diagnosis for insurance reasons until they turn 3 and age out of ECI.  For some minor cases a child can overcome a lot of the CP issues seen early on with therapy and early intervention.  This may be another reason we don’t often see doctors giving a CP diagnosis early.  If you suspect that your child has CP, regardless of age, you can always ask their doctor for his/her opinion.

Getting any diagnosis is scary.  A CP diagnosis can feel like the end of the world.  There are a lot of options out there, no cure, but a lot of treatment options.  You may have to deal with it for the rest of your life.  You CAN live with CP.  Many people with CP live very full lives.  My daughter has a severe form of CP and she is in dance class, she swims, she does all kinds of fun stuff.

***Special thanks to Dr. Vanessa Ven Huizen for double checking my medical explanations.

This content was originally created for and published by Preemie Babies 101.

How to talk to a SN parent

I am a mother of an amazing little six year old girl, Casey. Some may say she is medically fragile, some say she has special needs, some say disabled, and the list goes on and on.  We say she is Casey (or Princess Casey).  We know when we leave our house that we will draw attention.  Casey is a beautiful little girl and some people notice her simply for that reason.  However, she is also very loud.  She has a suction machine that we have to use frequently to help her breath and she also has stridor.  In addition to the noises we bring into a room we usually travel with an entourage of care providers, a wheelchair, and all kind of other things to draw attention our way.

It used to be hard for us to go out.  We were not comfortable with the stares and questions or comments.  However, over the years we have figured it out as best as we can and we can now enjoy going out with Casey.  For the most we have found that when people are staring it is not with malice, but curiosity.  Most of the questions and comments are said with good intentions. There are a few exceptions of course, and those hurt, but most people are very welcoming to all of us and happy to meet Casey and hear her story.  We do find that some people may want to talk to us, but are worried that they may say something to offend us so instead they sit back (and often they end up just staring).

Most people are aware that the R-word is not acceptable, and some people have heard about and try to follow the People First Language.  These are great tools to know what is going to offend someone for sure, but I hope with this article that I can make it even easier for you.

First thing first, we are parents just like you.  We are proud of children.  We want to protect our children and give them as many wonderful life experiences as possible.  This is true for all parents, regardless of our child’s abilities.  Some of us may need to modify experiences in order for them to be safe or accessible for our children, and some of us may have to miss out on a few, but we want to see our children happy- just like any other parent.  Our kids are just like other kids.  They like cartoons, music, tickles, books, etc.  They would rather talk about ‘My Little Pony’ than politics.  When they are upset they want their parent to comfort them.  I think if you keep this in mind, it will make interacting with families of special needs children a little more natural.

Here are a few more tips and examples:

Don’t assume you know ANYTHING about a child.  Just because my daughter sounds like she is snoring from the stridor does not mean she has a cold or is asleep.  I wish I had a dollar for every time someone looked at her and asked “Does she have a cold?”

BAD:

• Does she have a cold?


• He has Down Syndrome.  My sister’s friend’s cousin… has Down Syndrome too.


• Oh gosh, he is really throwing a fit, he must have autism, right?

GOOD:

• How old is she?


• I have a little boy that like’s trains too (if the child is holding a train or something).


• That’s such a pretty shirt, is pink your favorite color?

As you can see, the ‘GOOD’ examples are things you would say to ANY OTHER parent.  After you break the ice and talk with a parent of a child with special needs let them decide if they want to share more about their child’s condition.  You may be right in guessing the diagnosis, but the child is so much more than their condition.  Notice the child for being a child.

NEVER ask what is ‘wrong’ with a child.  Our children are not broken, they are just different.  This does not make them wrong and a healthy child right.  We have had a few people watch us suction Casey then come up and ask what’s wrong with her to require this activity.

BAD:

• What’s wrong with him/her?


• Is he/she sick?


• Should I call someone for you?


• Do you have to do that here, can’t you step away?  That’s so gross.

GOOD:

• I have never seen anything like that (referring to equipment- not the child), what is it?


• It looks like you are pretty good with that thing (again- referring to equipment), I bet it took a while to get used to.

When you see someone using equipment that you have not seen before, chances are they expect the questions.  Unless they are having a really bad day, or are in a rush, they would much rather you ask a question than sit and stare are them.  Just be sure to ask the question in a respectful manner.  If the device is gross (some of them can be) don’t act disgusted.  We know it’s gross, we don’t like doing it any more than you want to see it.  Bottom line is, whatever it is HAS to be done.  The suction tools we use pull out some gross stuff.  We try to keep those out of site, and covered, but there are times when we cannot avoid it.  You being grossed out about it is not going to help anything.  If you are grossed out by something, look away.

We are NOT heroes.  We think our kids are, but we are parents.  We are doing what anyone else in our shoes would do.  It’s hard to put yourself in our shoes.  We get that, but if you want to praise anyone, we would prefer you praise our kids.

BAD:

• Wow, how do you do all this?


• I don’t think I could do this at all.

GOOD:

• I’m impressed, you really juggle a lot.


• Your kid looks so happy; all that you do for him/her is totally paying off.

One last tip- it’s NOT a contest.  Some of us have children with more severe conditions than others, but regardless of the extent we are all going through the same thing.  When our child is diagnosed (or in search of a diagnosis) we end up going through the grief cycle.  The time we spend on each stage or the number of times we cycle through may change depending on our child, but the general feelings are all the same.  I’ve found that I have to explain this a lot to other families of children with special needs.  Early on when I would hear other families devastated by their child walking late, or having a learning disability I would get very angry.  I did not understand how they could act like that was such a huge deal when I would have done anything to have their problem.  I learned over time though, that it’s not about the challenge itself; it’s about the fact that our child has to deal with any challenge.  It’s all very subjective.

BAD:

• Oh that’s nothing, so what if your child has ADHD at least they walk.


• I was having such a bad day, but then I thought to myself at least I’m not you. (Yes, I really have heard this one.)


• How long will this last?  Or how long does he/she have?

GOOD:

• It’s got to be hard to deal with anything like that.  There are lots of organizations out there that can help get you in touch with other families that have or are going through the same thing.  (some examples found here)


• Is there anything I can do?  Don’t ask this unless you intend to follow through.  Things like cooking, cleaning, watching the kids, feeding the dog are all ways that people can help especially while a family may be dealing with a hospital stay, numerous appointments, etc.

Our kids don’t have expiration dates.  Sometimes we are given prognosis on how long our child will be sick and/or live, but these are NEVER things to focus on.  When we are expecting a child to be better in a certain time and they are not this type of question is like a thorn in the parent’s side.  When a child is on borrowed time this type of comment can be a brutal reminder.

Really truly the best way to reach out to a family of a child with special needs is to treat them the same as you would anyone else.  Recognize the parents are doing the best they can (and that if you had to do the same for your child you would).  See the kids as kids, not as a condition or disease.  Questions are okay.  We know our kids look, sound, act different.  We expect questions and many of us are happy to share our children’s stories.  A respectful question is always better than staring.

This content was originally created for and published by Papas of Preemies.

Organizations for Miracle Kids

We would like to share/feature some FREE items that you can obtain for your little miracles. There are many wonderful organizations and individuals who are volunteering their time and efforts to bring joy into the lives of our children. If there are any that we missed, please comment with links and details as well as add them to our ever growing Resource Directory. Thank you to all of these organizations and individuals for doing what you do- it really does make a difference.

Medi Monsters
MediMonsters: Providing cancer children and chronically ill children ages 18 and younger with a FREE monster to gobble up fears during doctor's appointments, hospital stays or uncomfortable procedures and treatments!

Kourageous Kids
Creating tailor-made books for children with terminal illness depicting them as the heroes they are. Hope is precious. Let's share it.

Sweet Dreams for Kids
Sweet Dreams For Kids is a nonprofit organization that donates new pajamas to kids in the hospital. We want to take the "ICK" out of being SICK.

Pillowcases for Patients
To bring joy and smiles to kids with life-threatening illnesses, check out Pillow Cases for Patients.

Love Quilts
Welcome to the homepage for Love Quilts! We are a cross stitch group that creates cross stitched quilts for children with life threatening or life long illnesses. Love Quilts began in February 1999 and in the fall of 2003 we passed our 100th quilt made! We sent out our 550th quilt in January of 2011!

Please feel free to browse around and view the webpages that have been created for these special children. See the navigation links on the left side of this page for more information you will need to help Love Quilts.

These quilts are being made by a lot of wonderful people from the US and even other countries! These squares are counted cross-stitch only, not stamped or machine stitched. Most children are offered on a sign up basis and you may randomly pick the children you wish to stitch for. We also accept "any child" squares which are saved and used when an odd number of squares come in for a quilt or, when we have enough, to create a full quilt for a child who might not be able to wait the several months it takes to get a quilt made via sign ups.

Joy Jars
JoyJars® were created by Jessica Joy Rees during her courageous 10 month fight with two brain tumors. Jessie used her JoyJars® to spread hope, joy and love to children fighting life altering medical illnesses.

Blessing Boxes
Hi! We are Sara and Alexis and we are Blessing Boxes. We send boxes of blessings to children with cancer and other life threatning diseases. We are both teenagers and we love helping these kids! If you have any questions message us!

Icing Smiles
Icing Smiles is a nonprofit organization that provides custom celebration cakes and other treats to families impacted by the critical illness of a child. We understand that the simple things, like a birthday cake, are luxuries to a family battling illness. Our goal is to create a custom cake for the ill child, or their sibling, that provides a temporary escape from worry and creates a positive memory during a difficult time.

Project Sweet Peas
Project Sweet Peas is a non-profit organization run by volunteers across the country, who through personal experience have become passionate about providing comfort to families with children in the intensive care units and to those who have experienced pregnancy and infant loss.

Our programs support the wellness of families by providing care packages and other services that offer comfort while furthering the bond between parent and child, and treasured keepsakes to families who have experienced a loss.

Through our services, we give from our heart, to inspire families with the hope of tomorrow.

Peach's Neet Feet
Peach’s Neet Feet donates custom, hand-painted shoes to children living with disabilities and fighting serious illnesses. Every shoe is customized to complement each child’s life, interest, and courageous fight. These personalized, one of a kind gifts lift the spirits of children and their families. When a child is fighting an illness, the whole family is impacted. With the web of caring individuals and the gift of personalized shoes, families are supported and strengthened.

Tubie Friends
For children receiving a feeding tube, a stuffed friend with medical equipment mirroring the child's can make the entire process less frightening. As much as possible, we mirror the child's medical interventions to the animal by placing a similar feeding tube, as well as additional medical interventions such as central IV lines, tracheostomy tubes or oxygen cannulas if possible. Additionally, each Tubie Friend comes with a parent letter providing information and listing support groups for feeding tubes.

Tubie Friends were initially intended for people with medical devices and are developmentally under the age of 18. However, we know there is value in an adult, school, siblings, caregivers or doctor having a Tubie Friend as well. Currently, our donations are solicited and collected for children, so we need to use our funds for children. To meet these other needs, we have started a fundraiser that allows anyone to own a Tubie Friend and support our cause at the same time. If you are not requesting a Tubie Friend for a child, please visit our products page and request a Sibling Tubie Friend. If you have questions, please email us.

Eli's Angels
Our Mission is to send children with Leigh’s disease, mitochondrial or metabolic disorders a gift, for them to enjoy, create memories, know they are special and provide support to the families who care for them.

Songs of Love
The Songs of Love Foundation is a nonprofit organization dedicated to providing personalized songs for children and teens currently facing tough medical, physical or emotional challenges, free of charge.

Cole's Quilts
A group of stitchers who come together to create hand-made quilts for children who have or have passed away from SMA. Founded in Cole Webb's honor.

Hope and Play-Doh
We wanted to find a way to give back what we received when we were in our time of need. So many people stepped to the plate for us with donations and toys for the kids to play with on the long days that we were at the hospital while Patrick was getting his treatments. Along with those long nights and weeks being admitted into the hospital. Hope and Play-Doh is a way for us not to only be able to give the kids a fun activity to do while in treatment. We picked play-doh because the sky is the limit. There are so many different things that you can do with play-do. Whether it's building, molding, or sculpting.

Andrew's Toybox
Andrew's Toybox is a non-profit organization dedicated to providing special care packages filled with toys, crafts and books to children with life-threatening illnesses. Their mission is very simply - to provide smiles to the faces of sick children. We feel children facing the most difficult of life's circumstances deserve all the special treatment they can get.

Angels for Hope
Receive or send free crocheted angels, butterflies or smiley faces as a reminder that you/they are not alone and that someone cares!

Pages for Children, Inc.
Pages for Children, Inc. send various kinds of books, birthday cards and appropriate holiday cards (each with a personal message inside), as well as other items.

From Z with Love
Send to care packages to new OI babies and their parents, including altered clothing, lists of resources, testimonials, and some of the types of things Zayana loved. We know she would have wanted to spread her love to all of the other OI babies!

Coping with Laryngomalacia
Through the many different programs, Coping with Laryngomalacia offers families socks, blankets, formula and much more.

Inspiration Through Art
Complimentary (free) photo shoots for children with terminal/chronic illness and their families by professional photographers in their area.


Experience the satisfaction of making a sick child's day and giving them something to look forward to. Send a card and a hug -- one of the smiles you create just might be your own!

Cards for Kids
I'm really excited to start a Facebook page where I can use my love of crafting and making cards and gifts for good causes. I have done this for a long time. Usually I go on Ellen Degeneres' Facebook page and when I see a story that touches my heart, I do something to brighten that persons life. So I created my own page in hopes people will join me. I really care and just want to make sick kids days brighter. So, if you know someone who could use a card, message me or post their story and I will message you for address and details.

Socks 4 Surgery
Socks for Surgery is dedicated to providing a keepsake of a pair of socks, a reminder of overcoming the adversity of surgery. Our mission is to improve their surgery experience by keeping their feet warm, while keeping a personal belonging with them. We believe health and wellness will lead to a satisfying and rewarding life. We want to inspire fellow friends to help spread awareness of birth defects.

Angel Love Boxes
This is an outreach ministry of Food4Disasters, www.facebook.com/food4disasters and we sponsor families with chronically-sick/injured children. We all come together on this group to bless each family with items they may need such as fast food meal cards, gifts, toys, diapers, clothing, and homemade gifts from the heart.

Pop 'n Grow
Pop 'n' Grow is the U.K's only neonatal clothing charity that supplys it's unique patented clothing to Neonatal units across the U.K 100% FREE.

Project Linus
First, it is our mission to provide love, a sense of security, warmth and comfort to children who are seriously ill, traumatized, or otherwise in need through the gifts of new, handmade blankets and afghans, lovingly created by volunteer “blanketeers.”

Little Princess Trust
The Little Princess Trust provides real-hair wigs to boys and girls across the UK and Ireland that have sadly lost their own hair through cancer treatment.

Locks of Love
Locks of Love is a public non-profit organization that provides hairpieces to financially disadvantaged children in the United States and Canada under age 21 suffering from long-term medical hair loss from any diagnosis. We meet a unique need for children by using donated hair to create the highest quality hair prosthetics. Most of the children helped by Locks of Love have lost their hair due to a medical condition called alopecia areata, which has no known cause or cure. The prostheses we provide help to restore their self-esteem and their confidence, enabling them to face the world and their peers.

Emmy's Heart
Emmy’s Heart volunteers create tutus and crowns for BUTTERFLY PRINCESSES and capes and masks for SUPERHEROES undergoing treatment for serious illnesses or disabilities in South Florida.

Jaxson's Blankies
Jaxson was born 6 years ago with Down syndrome and multiple medical problems including a hypoxic brain injury. After spending months in the ICU, we discovered blankets were a hot commodity! Finding just the right one was important, and many of Jax blankies we used we still have today. When my mother in law taught me how to crochet around blankets, I decided I wanted to make blankies for other children who were always sick and spent a lot of times in a hospital room. We pick material specifically for each child so it will be special! You can visit Jaxsons website at jaxsonsfight.blogspot.com

Butterflies for Courageous Kids
Hey Everyone,my name is Alli and I am 19. I am a sophomore in college battling a Chronic Illness called Gastroparesis (since 2009) and am currently studying to become a nurse for pediatric oncology. I am also the founder of this project and a huge supporter of the Jessie Rees Foundation and encouraging courageous kids to NEGU ( Never Ever Give Up). I want to customize each butterfly to fit each unique kid. I want it to have their interests and likes shown by small drawings and images. These are completely free to courageous fighters and their families! Request away!

Sisters by Heart
Sisters by heart is a group of heart moms who came together during their CHD journey – some of whom were fortunate to meet prior to their CHD warriors arrival. We’ve supported each other in our journeys with our congenital heart defect children. Knowing the challenges and difficulties we faced upon diagnosis, and more so, upon bringing our HLHS fighters into this world, we created Sisters by Heart to reach out and support parents of the newly diagnosed. A major aspect of our mission is to send care packages to new mothers (and fathers) who are at the beginning of their journey. We want them to know that they are not alone and provide resources and understanding while their child undergoes care and treatment from birth throughout recovery.

Mikey's Heart of Gold
Mikey's Heart of Gold donates Beanie Babies to Children that have Cancer, other illnesses, been abused, or injury. With each Beanie comes with a HOPE Charm a Photo Card from our 2 year old Puggle and a letter from us. There will be enclosed now what is called a Beanie Bear blanket they have been made from the seniors from a close friend who works at the nursing home Please share the page and get the word out Thank you so Much

Operation Faith and Hope
My name is Holly Orcutt & God put on my heart to start this Outreach to send cards to children who are sick. My plan is to send them cards at least once a month and on their bdays & holidays. I would also like, God willing, to send them little gifts from time to time. I am also doing my best to post daily devotionals for the family on this Facebook page. To be a source of encouragement for them. I am also working with our local Hospitals & Hospices to start making visits to the children that are inpatient. And take them a card & hopefully a gift. Just to let them know that people outside of their family & friends are thinking, praying & care about them as well. As of today,Jan 2, 2013, I have been blessed with 65 children. Each one has touched my heart so deeply & I think and pray about them & their family ALL day long.

An Angel for an Angel
I send hand made angels from a wine cork to sick children to remind them angels are watching over them and their families during this dark time in their lives. I do this on my own for now. I am looking into making this program a non profit org. for now if anyone would like to help with the cost of mailing these angels to sick children and their families, I have a funrazr botton on my pase and would appreciate your donations no matter what amount!! If you know of a child in need of an Angel please message me, Thanks for your support!

Gracie's Gowns
Gracie's Gowns make hospital gowns for chronically ill children throughout the US and internationally as well. They are personalized with the child's name and I match the fabric/gown to what the child likes or is interested in the most.