Summer Fun and Discrimination against Kids (with or without disabilities)!

By: Matthew Dietz

Unless the housing facility is a qualified 55 and over housing development, a housing provider cannot have rules that treat children differently, and less favorably than adults. When the US Congress amended the Fair Housing Act in 1988, it prohibited housing practices that discriminate on the basis of familial status.When it amended the Act, Congress recognized that “families with children are refused housing despite their ability to pay for it.” In addition, Congress cited a HUD survey that found 25% of all rental units exclude children and that 50% of all rental units have policies that restrict families with children in some way. The HUD survey also revealed that almost 20% of families with children were forced to live in less desirable housing because of restrictive policies. Congress recognized these problems and sought to remedy them by amending the Fair Housing Act to make families with children a protected class. So any rules, that do not have a legitimate safety justification, cannot indicate a “preference, limitation, or discrimination” against children under the age of 18. This includes rules that prohibit children from common areas in the facility with or without supervision, or limit the facilities of the housing development to adults. All rules must apply to children and adults equally, and cannot solely target children’s behavior.

If rules have a legitimate safety rationale, then such rules may be legitimate. But, again rules such as all children under sixteen must be supervised by an adult does not have a safety rationale, but a discriminatory basis against loud teenagers. On the other hand, a fifteen year old at a gym may injure him or herself on free weights without having supervision.

Summer camp must be inclusive

Over the past fifteen years, I have had several cases involving children who were not permitted to go to the summer camp of their choice, or were segregated in the summer camp because of the child’s disabilities. A summer camp, like any other public accommodation under the Americans with Disabilities Act, must provide reasonable accommodations for campers with disabilities, and must not segregate them from other students. Camps operated by governmental entities or colleges have a broader duty to accommodate campers with disabilities than some private entities that do
not have the same resources as a governmental entity. Examples of situations which I have encountered over the years are as follows:

• Children who are Deaf – Deaf kids have the right to a qualified sign language interpreter for all programs and services of a camp that involve communication that is long, complex, or important. Examples of this would be instructions on how to play a complicated game, story time, puppet shows, and educational instruction. If there are games that involve communication, then an interpreter would be appropriate so the Deaf child is included.
• Autistic kids – If a child who lives with autism has a one-on-one aide at school, for the same reasons, that child may need a one-on-one aide at a camp. Further, if a child needs further instruction in a game, or assistance with social interactions, that would be an accommodation that must be provided.
• Kids who have a medical condition such as Diabetes – If a child has a medical condition, or needs assistance with a medical condition, such as diabetes or HIV, then the question is whether the child poses a direct threat to his or her own health or the safety of others. If a child needs minor assistance with a medical condition, or can manage his or her own medical needs and monitoring, a camp cannot discriminate against these children.
• Kids with mobility impairments or other physical disabilities – Camps, like any other public accommodations, must have their facility accessible to children with disabilities. Older camps must do modifications that are readily achievable, easily accomplishable and able to be carried out without much difficulty or expense, and those camps altered or built after 1991 must be constructed accessibly. The camp is also responsible for making reasonable accommodations for campers with disabilities, which may involve some personal services, such as assistance in dressing, if similar services are available for able bodied campers.
• Kids with allergies – Kids who have allergies cannot be excluded from camps, and camps must be prepared to exclude certain allergens to accommodate a camper, and be trained in the event a camper has an allergic reaction. It would not be unreasonable to expect camp counselors to learn how to administer epinephrine auto-injector (“Epi-pen”) shots and dispense asthma medication, assist in administering Diastat for seizures in emergencies or otherwise teach camp counselors in basic first aid or CPR.

Parents can choose to send their child to a segregated camp, because some camps may provide special skills or advantages for children with disabilities, but the choice of going to a specialized camp is a choice, such as camps where all children are deaf.
However, all children may not be able to go to integrated camps. For example, there may be children with developmental disabilities or intellectual disabilities who would not be able to care for themselves at a sleep-away camp, and it would be a fundamental alteration of the camp’s programs to develop a program for one child’s disability. Further, if a child is dependent on mechanical supports, a camp would not be required to hire medical personnel to accommodate medically complex children. For these kids specialized camps are a phenomenal way to get out and enjoy the community. For example, Nicklaus Children’s hospital operates the VACC camp for technologically dependent children which includes swimming, field trips to local attractions,campsite entertainment, structured games, “free play”, to promote family growth and development while enhancing these kids’ self-esteem and social skills.

It’s so damn hot – my kid has asthma and needs an air conditioner

Last year, we represented a mother who had a child who lived in HUD-subsidized low-income housing. Asthma is often triggered by inhalation of air particles that contain allergens such as pollen, mold spores, dust mite droppings and animal dander. Air conditioners contain filters that collect and store these particles, keeping intake to minimum. Air conditioning also helps eliminate humidity on hot Florida nights which enables mold and algae to grow much more rapidly than it could if it were living in dry air. Some children and adults suffer from asthma to the degree that not having air conditioning may result in serious harm and hospitalization. Requesting to install an air conditioner unit in a home or apartment would be a reasonable accommodation for a person with a disability.

According to the Fair Housing Act, a tenant with a disability can request a reasonable modification. According to HUD Guidance, “A reasonable modification is a structural change made to existing premises, occupied or to be occupied by a person with a disability, in order to afford such person full enjoyment of the premises. Reasonable modifications can include structural changes to interiors and exteriors of dwellings and to common and public use areas.” Under the Fair Housing Act, a housing provider must permit the modification, the tenant is responsible for paying the cost of the modification. If the housing provider is a public housing authority or a housing provider that receives federal financial assistance, the modification must be paid for by the housing provider unless providing the modification would be an undue financial and administrative burden.
Another example modifications can be a pool lift!

Discrimination in Pool Rules

• No inflatable flotation devices.
• Water wings, swimmies, floats, bathing suits rings, and other inflatable devices are not permitted in the pools.
• Absolutely no dogs allowed in pool area

Also, under the Fair Housing Act, persons with disabilities can ask for “reasonable accommodations in rules, policies, practices, or services, when such accommodations may be necessary to afford … person(s) [with disabilities] equal opportunity to use and enjoy a dwelling.” So when a person is required to use water wings, floats, special swimming devices, they can do so. In order to request an accommodation, the person needing an accommodation should ask the housing provider, and if the disability is not obvious, then the person may need to obtain verification from a doctor, therapist, or any other provider verifying the disability and need for the accommodation.

In addition, “no dogs allowed” rules do not apply to service or emotional support animals, where their presence is necessary for the person with a disability equal use and enjoyment of the premises. The Fair Housing Act and the ADA does not override public health rules that prohibit dogs in swimming pools. However, service animals must be allowed on the pool deck and in other areas where others are allowed to go.

Roseline Joseph receives a Christmas Gift from the Coral Gables Police Department to welcome her medically fragile grandchild home

Roseline Joseph and her two children with Sharon Langer and Coral Gables Police Lieutenant Bart Barta

Today, Roseline Joseph welcomed Coral Gables Police Lieutenant Bart Barta to her home and received $300 in gift cards as a holiday gift from the City of Coral Gables Police Department.  Ms. Joseph was just granted custody of her grandson, who is a medically-fragile three year old with a disability, and requires 24-hour per day medical care and supervision.   This little boy has been in foster care and in skilled nursing facilities since he was an infant.  Instead of presents in Ms. Joseph’s home, it was filled with medical supplies and equipment awaiting the return (at 4 P.M.) of the best present that Ms. Joseph could hope for.  Sharon Langer, guardian ad litem for the child and Development Director of Disability Independence Group, is overjoyed at the reunification of the family and another child out of a nursing facility to a forever home.

Ms. Joseph’s gift was made possible by a  long-standing member of the Coral Gables community, who wished to remain anonymous.  This Santa Claus gave the Coral Gables police department  gift cards  to be distributed in and around the city during holiday weeks, and to  victims’ homes, families in need and to others facing times of hardship.

Kids Crusaders Corner

Welcome to this month’s edition of Kids Crusaders. It is so hard to believe that August is coming to a close. I’d like to open this month’s article by saying that in the beginning of 2014 when I was asked to write for the monthly newsletter for DIG, I was honored.

This would be an outlet where I could share my experiences of raising a child with special needs and to let other families know that they are never alone on their journeys. Everyone at DIG has become like family to me and though geographical locations may divide us, every month our hearts once again unite us. A very special thanks to Debbie Dietz for tackling the task of pulling all of the articles together and making this newsletter come to life. (An added thanks for letting me keep my articles personal and real, sometimes raw with emotion and sometimes filled with fun and adventure; for never getting upset with my procrastination!)

So on with August and the topic “exercise and the quality of life.” At first when I asked Debbie what the topic was going to be for August, I have to admit I felt stumped. I could feel a major writers block coming on. In the world of parenting a child with special needs (who happens to be an adult now, still living at home with us), “exercise and quality of life” didn’t feel like they naturally belonged in the same sentence. Every day is exercise when you are parenting; those of use with special needs children sometimes have a different curve ball that gets thrown in. I am a strong advocate for giving my son Nick the best quality of life that I possibly can. Exercise, outside of caring for Nick, should be equally important so that I will always be healthy and strong enough to continue doing the things that we enjoy doing together.

One of Nick’s favorite activities is swimming. In the water he is free. Free to move around and to enjoy the sensory stimulation of the water and the relaxation it brings to his overworked and exhausted muscles. Throughout the years, we have tried many different floatation devices and have even gotten creative making some of our own out of pool noodles. Not everything worked perfectly, but we always tried. For the past 8 years, we have found that the best thing for Nick to use in the water is a heavy duty life jacket (used for water skiing) and inflatable arm wings. With those as a combination he has full independence in the water.

A local branch of the YMCA opened less than 2 miles from our house in October 2006. We were happy to have a place so close to home that would enable us to let Nick swim year round. It was a brand new state of the art facility and we were asked for input for any suggestions that we could make to allow the facility to be as accessible as possible for anyone. The staff has always been amazing and understanding when it comes to the difficulty we have with transferring Nick in and out of the water. The facility does have motorized lift chairs into both of their swimming pools and their hot tub as well. These lifts don’t work well with Nick, or should I say, Nick does not work well with these lifts (is more the case).
We have developed a routine when we take Nick swimming that works. It may not look graceful, but for us, it works. We start out in the family dressing room where the process of getting Nick geared up begins. We usually have him wear his bathing suit from home to facility to eliminate one step in our struggles. It is a 2 person, minimum, task to take Nick swimming. The life jacket that he wears is extremely bulky and difficult to get on him while he is in his wheelchair. Once that is secure, we alternate with blowing up his arm “wings”. For ANY parent that has had to endure the painful process of blowing up the chambers in these arm wings you can appreciate the undying love we have to continue this ritual. Usually, on a good day, we can have him ready to enter the pool area in around 30 minutes.
On this one particular day, our struggles in the locker room were real. One of the arm “wings” kept losing air, or one of the uh-hum, parents did…the jury is still out on that one. However, I was determined that Nick was still going to swim since I had been promising him all week that we would go. I was suited up and ready to get in the water with him. When we had passed the windows looking over the pool on our way in, I was happy to see the adult pool was almost empty. We had left much later than we usually would have to swim, but the idea of having a lot of the pool almost all to ourselves was nice.

My husband assisted in taking Nick from the locker room and into the pool area, remaining in his street clothes. He had decided not to swim with us that night, but rather was going to watch from outside the pool area until I needed his help in getting Nick back out. Just as we approached the edge of the pool with Nick in his wheelchair, one of the lifeguards on duty informed me that Nick wouldn’t be able to swim (clearly my struggle in the locker room and my already sweaty face went unnoticed to her) because the “open swim” time was over. Already exhausted, I glanced up at the clock and looked at the still almost empty pool. It was 7:25pm. The facility was open until 10:00 pm. Nick was beginning to get wiggly in his wheelchair, wanting badly to swim. I asked her why he couldn’t swim if there was nobody in the pool. Her response was that there was a water aerobics class that was scheduled to begin in 5 minutes.

Having done a water aerobics class in the past, and some quick thinking on my part I asked the lifeguard if the class was open to members or if it was a fee class. She said it was open to members. Problem solved. I told her that Nick and I were getting in the water because we were going to participate in the class since we were both “members”. My husband laughed and said I was crazy. Ahh, perhaps he was right about the crazy part, but take note…it got Nick into the water!

Within minutes the pool was filled with a lot of people (to my surprise). Most of them older (I am trying to be easy with the “elderly” word as I just passed another year closer to polka dotted bathing suits with ruffles and matching swim caps) and all very friendly. A quick visual of the people taking the class (sizing up anyone that would potentially have any “issues” with Nick participating) and I was ready (or as ready as I could have ever been) for a new adventure.

The music started and I positioned myself strategically closer to the deep end with Nick to keep our splashing to a minimal (impossible). I could see my husband out in the lobby through the wall of windows, talking to some people and not watching us. While we marched in place I found a position that would allow me to hold onto Nick and somewhat actively participate in the class. (Refer to pictures of Nicks swim gear for the full visual of how difficult this was) I wrapped my left arm around Nick’s body, which included his life vest and half inflated arm wings. Holding onto the life jacket straps in the front, I was able to march in place with everyone else. Easy. Nick was in the water, we had music, I had one arm free to follow the instructor…it was all good. It was all good until the marching in place turned into jumping in place. Nick found this activity to be extremely fun. I, on the other hand, still exhausted from the locker room pre-pool, inflating wing failure prep, was finding this activity to be beyond exhausting. Not only did I have the water resistance of my own body weight jumping in and out of the water (one handed), I also had Nick’s weight (which is exponentially heavier than his usual weight of 140 pounds thanks to his water soaked swim gear). The jumping combined with the music was a lot of fun for Nick as I noticed he had increased his “splashing” in the water and he was laughing hysterically. Another glance around the other participants showed a lot of genuine smiles that Nick was having such a great time (I think I was looking for perhaps some looks of empathy as my struggle was real, very real.) In the midst of Nick’s splashing and my concerted efforts to keep up my jumping pace with the rest of the class, I felt a tapping on my right shoulder. I glanced over and saw an older gentleman who was behind me. I assumed that Nick’s splashing was bothering him so I managed to yell “sorry” over my shoulder and simply (not really, remember I said I was struggling) relocated Nick (still splashing and laughing) further away from this guy. More jumping and more splashing and another tap on my right shoulder. Another quick glance and I see it is the same guy. So, I yelled “sorry” over my shoulder again and moved to yet another spot as far away from him as I could without getting in the way of others. As physically exhausted as I was, I refused to quit jumping as long as Nick was laughing and having so much fun. My left arm was pretty much numb by that point, but it didn’t matter to me.

What’s the old saying? “Third time is a charm?” So, despite my second relocation with Nick in the water, I felt a third (and now final in my mind) tap on my right shoulder. Needing an excuse to stop jumping because I was truly exhausted, I stopped and spun around to face him. I had to tell Nick to be quiet because it was so hard to hear anything in the pool and I anchored his still jumping arms with my left hand to silence the splashing.

My body’s natural “fight or flight” response had obviously already kicked in seeing as how I had “flighted” to 2 separate locations to avoid having this man splashed by Nick. Now, I felt the fight in me brewing. I simply wanted Nick to have fun. In my mind, you are in the water which means you are already wet, so why are you about to say anything to me about my son splashing water on you? In my quiet “fight” mode (which had taken a brutal beating in the locker room before any of this had taken place) I scrambled to find just the right “special needs speech” to hit this guy with. In the seconds that passed (which felt like hours) I looked at this man and all I could muster up was “look, I’m sorry. He wanted to swim and they wouldn’t let him because this class was taking place, so I decided to do the class with him…..”He was trying to interrupt my apology to him (which was really a much needed break from all the jumping for me). I continued with “I moved out of your way twice so that you wouldn’t get splashed. I am sorry. He’s excited to be doing the class and it is in the water and water does splash.” Again, he stood there, speechless as I rambled on and on. His eyes never left contact with mine except for when I finally stopped talking long enough for him to say something, anything.
He quietly said “I don’t mind the splashing. I am glad he is having fun. I was simply trying to tell you (as he hesitated), umm “wardrobe malfunction”. My puzzled expression gave him no other choice but to break our eye gaze and glance quickly down before looking back at me again. My mind could not even begin to process what he might have been referencing and it sure was not prepared for what it was about to see when I finally had the courage to also glance “down”. And there she was. My right “tit” (and yes I called it a TIT because no self-respecting breast would have ever done this to me) was floating on top of the water without a care in the world. There was no bathing suit in sight, at least not on the right side of my body. The force of jumping up and down while holding Nick is what probably unleashed the beast. While I am extremely quick to come to Nick’s defense in the special needs arena, I found myself at an utter loss for words or action when my own “special need” felt the need to break free. So, what did I do? I did what any “I am so exhausted and don’t really have any fight left in me” woman would do at that moment. I looked back down at my floating TIT (which truly for a few moments felt like an out of body experience), managed to utter a quick “thank you” to my shoulder tapping savior and turned my back so that I could spare him from having to look any longer than he already had. A quick duck under the water to retrieve my suit and the escaped convict was jailed once again. (I can only thank the universe that this memorable moment was not caught on camera.)

I was now done “exercising” and my “quality of life” had taken a quick turn for the worse as I frantically waved to the wall of windows trying to capture my husband’s attention. When I finally did, it took him forever (it seemed) before he got anywhere remotely close to assisting us out of the water. In the time spent waiting for him, what was racing through my mind you ask? Well, I will tell you. My immediate thoughts went to how this man gently said “wardrobe malfunction” when what he probably wanted to say was “your TIT slapping against the surface of the water for the past 10 minutes has been splashing me more than your son has and I find it rather distracting”. But instead he chose to be a gentleman and say “wardrobe malfunction.” (Who said chivalry is dead?) The poor man is probably still at some bar trying to drink away the visual. There is not enough alcohol in the world.

Nick still loves to swim. I personally, carefully choose my bathing suits and the times that I will show my face publicly at the YMCA. In the lifetime I have spent learning how to tactfully deal with people regarding my son’s disability, I was surprised that I was unable to make a quicker recovery during my own personal time of vulnerability. I choose to laugh instead of cry because honestly, I don’t make this stuff up. This is truly my life and I have to find humor in it. My fight for equal rights for my son and breaking down barriers will never end. Perhaps that “wardrobe malfunction” was my body’s way of saying the bathing suit was a barrier and that’s why she made her great escape. (Cue music….”Born Free”)…..
As for exercising, I am making a genuine effort to make the time I need to get myself into better physical shape. It’s a work in progress. And yes, parenting a child with special needs is an exercise category all in its own. As for quality of life…I can’t wait for the next adventure and the opportunity to share it with all of you.
Until next month…laugh, live and love. And know that you are never alone on your journey.

Julie (Julie.kidscrusaders@gmail.com)
“The quality of your life will be determined by the quality of your contribution. When you work to improve the lives of others, your life improves automatically.” (Kurek Ashley)

Kids Crusaders

By: Julie Fioravanti

Welcome to this month’s edition of Kids Crusaders as we celebrate the ADA, a law that went into effect 25 years ago on July 26, 1990. My son was born in April of 1991. While we knew from the day he was born we were going to be faced with challenges, we had no diagnosis and no idea what his limitations would be. It wasn’t until he was 4 years old that the ADA even remotely entered my mind. Nick was diagnosed at 10 months of age with Cerebral Palsy and the first few years were spent all consumed with therapies and early intervention programs.

My very first experience where I actually gave any thought or research into the ADA was at a local amusement park. We had taken Nick there for the day to enjoy some of the rides and the waterpark. We paid to park and I do remember that there were parking spots that were close to the entrance that were designated handicapped parking.

Upon entering the park, we went directly to the section of the park for younger kids. We scoped out all of the rides, being careful to take note of any ride that would accommodate Nick and one of us, as he was unable to sit unsupported. The very first ride was a kiddie roller coaster (imagine more like a few wavy hills instead of “roller coaster”). We stood in line waiting with the other families and Nick was giggling and happy. I walked to the front of the ride to talk to the girl that was operating the ride. I wanted to make sure that one of us would be able to ride with Nick to support him; she assured me that would not be a problem.

After a short wait it was finally time for Nick to ride. I assisted my husband in putting him in the back seat of the ride and my husband got in and sat next to him. It was at this point that a different ride operator approached my husband and told him he would have to get off the ride. I explained to him that I had asked the girl working there before him if it was ok and she had said that it was. He said she was wrong and my husband would have to get off the ride. This was all transpiring in front of the other families. One father approached me and offered to have his 10 year old daughter ride with Nick. I thanked him but declined. It was at that moment that the letters ADA entered my thoughts. Not knowing what the law was, I knew that there was a law that had been passed and my interpretation of that law was that my son should have equal access to these rides just like anyone else. While the discussion started with the ride operator saying that my husband had to get off the ride, it had quickly changed to him saying that my son also needed to get off of the ride. That is where I decided to stand my ground. This was in no way acceptable to me and I honestly didn’t care what anyone thought. I refused to let my husband get off the ride and the ride operator refused to operate the ride. For 15 minutes the ride was full of kids waiting and parents now standing by looking on, some in support of what I was saying and others being extremely rude and saying hurtful things (not worthy of getting credit in my article). Finally the ride operator called the park manager. I explained the situation and he asked if my husband and son would get off the ride so that the other kids could enjoy the ride and I said “No, not happening.” He said he wanted to talk about this someplace other than at the ride attraction. I stood my ground. No. He called park security. The ride was still not operating and some parents had taken their kids off the ride, no longer wanting to wait. Some waited, probably mildly entertained by my refusal to comply. Park security said they were “escorting us out of the park.” That was going to prove to be difficult since my husband was still seated in the ride with my son. I stood my ground. No. The police were called. Ahhh, my ground was standing was starting to shake a little. They asked us to get off the ride and to take the conversation into the office with the park manager. Being asked to take my son off the ride by the police changed up my confidence a bit, so we agreed to go with them to the office to discuss the situation together. Trying to maintain some sense of calm and not sound ignorant, I explained in front of the police that the park was “breaking a law” by denying my son access to this ride. When asked what law they were breaking I quickly began pulling on what little information I truly knew about the ADA. I was informed by the park manager that the park was in compliance with the ADA because they had handicapped parking spaces and handicapped stalls in each bathroom. My response to that, which I would love to share (however the editor may not approve of the language involved), was something that made a huge statement and also got us escorted out of the park by the police. The park refunded our money for the admission but refused to refund our parking fee since we had parked in a designated handicapped spot.

The ride home was about an hour long and I spent most of it crying because I was so angry at what had taken place and at my lack of knowledge about the law and how it applied to our son. I did contact local legal advocates that contacted the park and the park owner called me to apologize. The apology was followed by a…”but” statement at which point I just became even more frustrated. Long story short, the park which was privately owned at that time, through mediation with the advocacy center, expanded their “kiddie” section of the park the following year to include rides and attractions that would accommodate having children ride with their parents. The owner sent a letter to the house with information regarding the changes that were made along with free passes to return to the park along with a cheap, “crunchy” stuffed animal for Nick that you would win at an arcade booth. Still feeling unhappy with our entire experience, I returned the package to the owner and we have not returned to the park with Nick. The theme park was subsequently bought out a few years later by a large well known company and has expanded and is operating to this day. We went to the park once without Nick to see what, if any changes had been made since the purchase of the park. Adequate changes had been made and accessibility is no longer an issue.

For us, that was 20 years ago. The changes that I have seen over the past 20 years have been huge. While I do not have a degree in law, our adventures with Nick over the years and accessibility issues have broadened my awareness and my knowledge base. I have a better understanding of the law and the impact that it has had for people living with a disability. Ten years ago one of our adventures with Nick led us to Matthew Dietz, which led to yet another adventure (but I will let Matthew share that one!)

Disability rights ARE civil rights. Stand your ground, even if it feels like it is shaking. I have always stood mine and will continue to stand mine, knowing that when I take a stand, I take it not only for my son but for others as well.

“A strong person isn’t the one who doesn’t cry. A strong person is the one who sheds tears for a moment, picks up her sword, and fights again.”

Thanks for continuing to follow me on my journey. Hopefully there will be a day when a sword will not be needed. There has been a lot of progress made in the past 25 years. Happy Anniversary ADA….

Until next month…live, laugh, love and know that you are never alone.

Julie     (Julie.kidscrusader@gmail.com)

“The Americans with Disabilities Act (ADA) was signed into law on July 26, 1990, by President George H.W. Bush. The ADA is one of America’s most comprehensive pieces of civil rights legislation that prohibits discrimination and guarantees that people with disabilities have the same opportunities as everyone else to participate in the mainstream of American life — to enjoy employment opportunities, to purchase goods and services, and to participate in State and local government programs and services. Modeled after the Civil Rights Act of 1964, which prohibits discrimination on the basis of race, color, religion, sex, or national origin – and Section 504 of the Rehabilitation Act of 1973 — the ADA is an “equal opportunity” law for people with disabilities.” (www.ada.gov)

 

A Parcel of Penguins

We have great news!  We are going to be able to sell more t-shirts.  Stay tuned for more information.

If you already have a t-shirt please post a picture of you wearing the t-shirt on our Kids Crusaders Facebook Page.

https://www.facebook.com/KidsCrusadersByDisabilityIndependenceGroup

julie Kids Crusaders Corner

By: Julie Fioravanti

Welcome friends to this month’s edition of Kids Crusaders. My goal is to introduce you to an amazing organization, give you just a few of the stories and introduce you to a few of the many people that make up this “family” and encourage you to consider joining, or referring someone you may know that could benefit from the unconditional love and support that is given and growing each day.

The group is something that I stumbled upon in my Facebook feed one night and am so glad that I took the time to look into it further. The official Facebook page is called I Run 4 Michael and you can request to sign up as a runner or a buddy (Please note: Buddies are DESPERATELY NEEDED!!) at www.whoirun4.com.

The founder of this group, Tim Boyle had no idea the impact he was about to have on so many people when he decided back in 2012 to quit a 2 pack a day smoking habit and start a journey into a healthier lifestyle. Tim posted a picture on Facebook for inspiration as he prepared to run his first 5k. One of his Facebook friends commented on the photo with something simple and profound. It said “You can run for me anytime!”…and from that the I Run 4 “family” was born. Tim said “I run because I can. When I get tired, I remember those who can’t run and what they would give to have this simple gift I take for granted. And I run harder for them.” Tim’s “buddy” is Michael Wasserman. He is 53 years old and has Downs syndrome.

Quoted from the whoirun4 website is this all-encompassing description of what this “family” truly is.

“We all have friends who say, “run some for me,” because they don’t WANT to run. But what about those who can’t run for physical or developmental reasons?  Having been inspired by a close friend battling bilateral hip dysplasia, Founder Tim Boyle discovered a whole new inspiration to run.

Here at IR4, we foster relationships. We want to see runners and buddies alike experience the profound power of encouraging and being supported by people who were once perfect strangers. Running can just be about health. Or it can be about dedicating our miles to and creating awareness for our buddies with special needs whose conditions span the spectrum from total physical disability to developmental delays to autism spectrum disorders, as well as myriad rare conditions we’re only now learning about thanks to our participation in IR4.

Through I Run 4 Michael and its branch organizations Kerri On: I Run 4 Remembrance and IR4 Siblings: The Unsung Heroes, athletes of all levels and kinds find new motivation, purpose, and power for their workouts. It’s about more than miles; it’s about building relationships and bolstering support systems.”

The Ambassador for the organization is Jodi Stoner (known to all as Run Jodi). Jodi was matched with her buddy River Allen 1 year ago. Jodi says that River is “the little man of her dreams.” River was born with Spina bifida. Spina bifida is a type of birth defect called a neural tube defect. It occurs when the bones of the spine (vertebrae) don’t form properly around part of the baby’s spinal cord. Jodi says that while dedicating her miles to River she is also bringing awareness to his condition, advocating for his cause. River has given Jodi such motivation. At a recent doctor appointment, River started to run down the hallway and said to his Mom “Look Mom, I’m running. Like Jodi runs for me.” It was at that point that they knew he truly understood! (River is 3 years old and can light up the world with his smile!) Jodi has set a personal goal to run her 100^Th half-marathon before her 50^th birthday. She is 49 years old and has completed 85 half-marathons so far. She will turn 50 in January! Two families were joined as one through a common thread of love, compassion and dedication. She recently was able to meet River in person and they crossed the finish line together during one of the marathons. We spoke for about an hour on the phone for this article and at the end of the conversation, I felt like she was a long lost friend I had known my entire life. We picked up right where we must have left off, which is just part of the magic when I Run 4 people connect. She contacted me the next day with a quote that she wanted me to share. She said she had been thinking about how to sum up her feelings for the past few weeks and what came to mind was this, “I didn’t light this torch; I am just trying to carry it.” She ended by saying “This sums up how I feel about the blessings that have been given to me.”

As a mom of a child with a disability, her closing statement touched my heart. We parents often live in a much “protected” and sometimes isolated environment, some by choice, some not. We realize that there are people in the world that are not always kind. Our instinct is to shield our loved ones from the cruel and hurtful things in the world. While this is not always possible, the reality is, it is becoming less of an issue. Inclusion is making its mark on the world and everyday people are embracing and accepting it. And the kind, loving people are everywhere; willing to share their gifts and abilities with us and support us on our journeys. They see us and they see our children as “blessings” to them. To sum up my own personal feelings after that conversation…”I feel like my heart has expanded outside of my body.”

Lesley Larson, Runner/Buddy Relations Director, began running around 5 years ago after the birth of her 3^rd baby. She learned about the idea of I Run 4 through a mutual friend she had with Tim Boyle. Originally she was intimidated about joining as a Runner with the program for fear that she would let someone down. She overcame her fear and was matched with her “buddy”, Troy Ramsey. Troy is a 21 year old young man that has Down syndrome. Lesley got to meet Troy for the very first time this year when Troy’s mom surprised her by bringing him to the Fargo Marathon in North Dakota from their hometown in Ohio. Lesley had no idea that Troy would be at the race until, there he was. A lot of the marathons are now recognizing the impact that the I Run 4 organization is having and will often supply medals for both the runners and the buddies upon completion of the race. Lesley states that this is all about mutual support. Its friendship, encouragement and an extended family that simply makes each day better. She currently runs 5 days a week. She posts many pictures and updates about her day on the Facebook page so that Troy can be a part of her everyday life. Separated by miles, connected by love. Nobody was ever let down! Lesley has taken on the role of Runner/Buddy Relations Director to help out the organization. While matches are made weekly, not every match is a perfect match. Sometimes a little communication can help to allow both runners and buddies understand the commitment involved when being a part of this amazing family.

My son Nick was matched on March 12 of this year with Adam Macdonald and Jen Seid. We are blessed to have them as a double match for Nick, dubbed “Team Nick”. Adam is currently finishing school to become a Chiropractor (Yay…since I’m sure there will be many adjustments needed for my aching back in the near future) while Jen is working as an athletic trainer and attending school to become a Physical Therapist. Jen is currently training for a marathon and both she and Adam will be running a race in the middle of June! Adam is also an avid biker (40 miles per week average, both road and mountain) and has posted some pictures and videos for Nick to see. Each post, picture, video is another small step of 2 families becoming one. Nick has recently started to stand with the help of orthotics (and 2 people) and has challenged Adam to ride one mile for every step he takes. There is mutual motivation, unconditional love, acceptance and friendship that will last a lifetime. Nick and I are so excited to begin this new chapter with two amazing people.

There are so many stories to share, too many for me to even begin to scratch the surface of. Every day people are being brought together and good things are happening. Be a part of this movement. If you know of someone that could be a “buddy” encourage them to go to the website www.whoirun4.com and click on the MatchMe icon at the bottom of the screen. There is a super great video to watch that will give you an idea of how truly heart touching and life changing this organization is. (Runners may also apply, however buddies are in urgent demand as there are currently over 3,000 runners waiting to be paired. If you join as a “Runner” be prepared to wait approximately 6-8 months to be matched with your buddy. The wait is worth every minute.) For people that may seem hesitant to join as a “buddy” for fear of the unknown, there is nothing to fear; there is only unconditional love and support. There are thousands of people that would be willing to explain what an amazing organization this truly is. There is also a link that you can share https://youtu.be/P4NYL777Nwk, PLEASE DO!!

I Run 4, Inc. is now an organization with 32,573 members. There have been over 10,500 “buddy” matches through 50 states and 29 countries. Currently there is a list of over 3,000 people waiting to be matched with buddies. Buddies are desperately needed, so please spread the word to everyone you know; help this family grow!

There are no words that I can come up with to truly describe this experience. I believe that you have to live it and since recently being matched, every day Nick and I are learning more and more about our new friends. We are forever grateful to have Adam and Jen join us on our journey.

“To love without condition, To talk without intention, To give without reason, And to care without expectation…this is the heart of a true friend.”

Find your friend today. Visit www.whoirun4.com.

Until next month, laugh, love and know that you are never alone on your journey (especially if you belong to the I run 4 organization!!!)

Julie – (Julie.kidscrusaders@gmail.com)

A Parcel of Penguins

We have great news!  We are going to be able to sell more t-shirts.  Stay tuned for more information.

If you already have a t-shirt please post a picture of you wearing the t-shirt on our Kids Crusaders Facebook Page.

https://www.facebook.com/KidsCrusadersByDisabilityIndependenceGroup

Kids Crusaders Corner – Nick’s Adventure in Disney World – Part 3

Welcome back to the March edition of Kids Crusaders Corner. This month I will wrap up the last of my 3 part story that began in January regarding a solo trip that I took my son Nick on for his 16^th birthday. (If you haven’t read the first two parts, please do, as it will help to make the story complete.)

Our adventures with traveling solo through Disney were truly that, adventures. In the first 2 articles you could see that we encountered a few obstacles that were “breathtaking” in a special sort of way and a lot of memorable events that occurred which, with no doubt in my mind, makes Disney the Magical place where dreams really do come true.

Part 1 of Nick’s Adventures in Disney;                                   Part 2 of Nick’s Adventures in Disney;

In last month’s article, I explained how the cast members at the Crystal Palace restaurant made Nick’s 16^th birthday so unforgettable by giving him a life-sized stuffed animal Mickey Mouse (which I had to creatively find ways to navigate both my son in a wheelchair and this over-sized plush Mickey through the remainder of our day at the Magic Kingdom and back to the hotel.)

And just when you thought the fun had stopped since we were to be flying back home the next day, it had just begun all over again. Disney was absolutely amazing at making sure I had all of the help I needed getting our luggage, Nick with his custom wheelchair, the life sized “mouse” and myself to the airport the next day. Once at the airport, we checked our luggage at the JetBlue terminal counter. This left me somewhat free to once again navigate Nick through crowds with a very large mouse strapped to the front of his wheelchair. As clumsy as this sounded, I felt great pride in the fact that despite a few minor hiccups during our trip, it was an overall success and Nick had an amazing time.

The actual “fun” started when we had to go through the airport security checkpoint. Since Nick is non-ambulatory, he is always taken to a special spot in his wheelchair where he is “inspected”, while I go through the standard “empty all of your pockets, take off your shoes, place all bags on the x-ray conveyor belt” routine. I passed through that rather quickly and joined Nick to watch the somewhat comical routine that we always go through with the TSA agents when they try to “wand” him down. The wand always beeps. Always. Perhaps someday they will realize he is sitting in a metal framed wheelchair. And they are usually pretty good about giving up after changing out the wand 4 or 5 times before they are convinced that it is really just the wheelchair causing the “beeps”.

This particular time was different. Nick absolutely refused to let go of his birthday gift from Disney. A few of the TSA agents had tried to take Mickey away from Nick to place it through the x-ray scanner. This of course resulted in Nick becoming visibly upset, kicking and flailing his legs, making a lot of noise and drawing a lot of attention to where we were. I explained to the agents that because of Nick’s disability, he often has a difficult time with change. And even after I tried to explain to Nick that Mickey was just going through the machine to “have his picture taken” it was still a definite “no” in Nick’s mind. I explained multiple times that this was a gift from Disney to my son for his birthday and asked if they could just use the wand on the mouse instead of making my son more distraught. After waiting for an additional 30 minutes, we had someone from the TSA (I assumed it was a manager) come over to talk to Nick again. Nick was not changing his mind. After much debate about what to do about the mouse, TSA agreed to use the “wand” on the mouse so that it wouldn’t leave Nicks possession. But of course, because the mouse was so big, there were metal pieces in the ears to keep them formed and upright, which in turn caused Mickey to beep non-stop. Now we have the full attention of the TSA. I tried taking pictures but was asked to put my camera away. How many people would one assume that it would take to hand frisk a stuffed mouse? The answer? Too many. It was obvious to everyone that this was just a very large stuffed animal. That beeped. With the use of multiple wands. And it beeped in the same exact spot every single time. The ears!

Growing tired of this excitement, I once again explained and demonstrated how the ears could be moved into different positions (because of the metal wires inside). I was asked to sit down and let them “do their jobs”.  I sat in a chair nearby as I watched at least 4 TSA agents discussing how they should proceed. Confiscating Mickey was not going to be an option (at least not in my book). Out of sheer frustration I said (what I thought was under my breath) “I highly doubt Disney packed Mickey with any explosive devices”….oops. Note to self and others, think it but please do not actually SAY IT. Another hour before the questioning stopped. I had even taken my camera out to show them the pictures of when the mouse was actually given to Nick during dinner at the Crystal Palace. I think it was after seeing the pictures, and truly not knowing how to handle this that they either felt we were no longer a threat or they were tired of dealing with me.

So we cleared security with less than an hour to get to our gate and pre-board. Once again, we flew JetBlue (I cannot say enough good things about flying with their airline when you need any special assistance.) We were greeted with all smiles as we pre-boarded the plane. Nicks wheelchair gets gate checked at the door of the aircraft so that it will be waiting for us at our next destination. JetBlue had seated us in the very first row (always so helpful) and I tucked Nick into the window seat where he could comfortably lean and keep himself in an upright position. The pilot was super friendly and talking to Nick about his birthday trip and what a special gift Disney had given him. (He had no idea that it was about to get even more special.) I buckled Mickey into the seat next to Nick and then buckled myself into the aisle seat. I laid my head back, thoroughly exhausted as the other passengers were starting to board the aircraft. Nick was so happy to be on the plane, as was I. We were to fly from Orlando into New York at the JFK airport. Once we were to land there, I was going to have to transfer Nick back into his wheelchair and change flights 2 gates down that would take us to our final destination, Rochester. I knew this, but also knew I had a couple of hours to nap and regain some strength before having to do all that.

As the plane was filling to capacity, the pilot came out and asked if he could talk to me. Nick was already starting to fall asleep leaned up against the window, clutching Mickey Mouse. The pilot explained that the flight we were on going into New York was a sold out flight, meaning Mickey could not stay strapped in the seat next to Nick. At this point I felt my eyes filling up with tears as I explained the horror we had endured at the security checkpoint and how important this was to Nick. The pilot came out and talked to Nick himself. He asked if we could “let Mickey sleep right above his head where the jackets and pillows were.” Nicks said no. But then when I asked and said Mickey would sleep better there until we got home he said yes. Finally. The problem escalated when Mickey, no matter how much we squished him, would not fit into the overhead compartment. The pilot asked me about gate checking him with the wheelchair. That was not an option since we had promised Nick that once the airplane was up in the air he could have Mickey back in his lap.

So, while the rest of the passengers had buckled in, and listened to the pre-flight safety instructions, the pilot and I were still trying to figure out what to do with the mouse. The pilot asked Nick if it would be ok if Mickey helped him fly the plane. Nick thought this was funny and said yes. Relief. We got the mouse into the cockpit; I snapped a quick picture of him in the pilots chair and then went back to my seat. The pilot said they had a “jump-seat” in the cockpit that he could secure him in there. I should mention this was a late flight from Orlando into New York and we were already 40 minutes delayed because of the mouse dilemma.

With the cabin door shut, and every seat on the plane full (with the exception of one single seat at the very back of the aircraft) we were finally able to take off. Before the plane had even pushed away from the gate, the pilot made an overhead announcement that he was sorry for the delay but that we would be leaving shortly and assured everyone that connecting flights were aware of “our” delay and that nobody would miss connecting flights. I was now buckled in next to Nick and there was a woman reading her book in the aisle seat where I had originally sat. She seemed totally oblivious as to anything that had been going on, engrossed in her book.

I knew there was a problem when the pilot reappeared to speak to me again. Apparently the mouse was too big in the cockpit and was in the way of some of their controls. He did tell me there was one single seat at the very back of the aircraft and he was going to attempt to have the flight attendant take Mickey back there and strap him in without Nick seeing. Fail. He saw and then his world fell apart. He cried and was kicking the wall in front of him while repeatedly saying “Mickey, Mickey”. Everyone was so tired at this point and it seemed like we had run out of options when the engrossed book lady looked up and asked if there “was a problem”. Yeah, just a slight one. So I explained to her what she had obviously not paid any attention to for the previous 40 minutes. I buckled Mickey into the seat next to Nick, which made him much happier and told the pilot I would take the seat at the back of the aircraft. I just asked that the flight crew come to get me immediately if Nick needed anything or seemed upset.

The pilot preferred I didn’t do that, but options were not plentiful at this point. “Book lady” had resumed her reading and as I went to pass by her I politely asked her to alert the flight crew if she thought my son needed me. She asked where I was going (again she had missed another important part of why we were delayed) and she nonchalantly said, “Would it be easier for everyone if I just took the seat in the back? I don’t mind. I’m traveling alone and just want to read.”

The pilot thanked her as did every passenger on the aircraft. I kept saying how sorry I was, but the pilot was so nice. He said “don’t worry about it. Everything has a way of working out.”

We finally arrived in New York well after midnight. Nick was sound asleep against the window with his mouse. I sat quietly and watched all of the passengers get off the plane for connecting flights. Knowing that we would be the last to get off the plane, I just waited. The pilot was thanking everyone for their patience and saying whatever pilots say as people leave. I was just way too tired to care. His wheelchair was waiting outside the cabin door when the pilot looked over and saw it. He looked at Nick sound asleep and said “oh, I forgot all about Nick. Don’t wake him just yet. Where are you flying to?” I told him Rochester, but our connecting flight was 2 terminals down. The plane we were currently on was heading towards Syracuse. He told me to let Nick sleep while he made a quick phone call. He came back and said that he just changed flight plans with the other aircraft. He decided to let Nick sleep and he would fly our plane into Rochester and the other plane that we were supposed to take would switch and fly passengers into Syracuse. I looked at him and wiped my tears away as I thanked him. He said it wasn’t a problem since neither one of them was from this area and a hotel to them was just a hotel. He said it was an easy enough switch. I asked him about the 50 passengers that had already made their way to the connecting Rochester flight. He said they were being sent back to our aircraft. I sat in the seat waiting for 50 angry passengers to return. Instead, as people re-boarded the aircraft their faces softened as they saw Nick sleeping soundly with his friend Mickey (now fully understanding the wheelchair at the gate belonged to him.) My faith in humanity restored.

Nick slept peacefully for the short flight from JFK to Rochester. We arrived after 2 am due to all of the mouse delays and people shuffling. We were the last ones off the plane as I carried a very heavy sleeping Nick and placed him in his wheelchair. I hugged the pilot and said I cannot thank you enough for everything. He smiled and again said it was really no problem at all.

It was not a problem at all until we went to collect our luggage. During the pilots agreeing to swap flights, they had not informed the ground crew, so here 52 of us stood waiting for our luggage that was not showing up. The luggage on the conveyor belt was the entire luggage for the people traveling to Syracuse, which meant everyone’s luggage for Rochester, went to Syracuse instead. When someone had finally figured it out, I felt as if I had 100 eyeballs all looking in my direction. I kept apologizing to everyone and out of the 50 people, everyone said not to worry about it. Only one business class passenger seemed to be really upset. We all had to fill out lost luggage reports which took another hour, but JetBlue assured everyone their luggage would be personally delivered to them by 3pm the next day and everyone was given a $75.00 credit voucher for their airlines for the inconvenience.

Just one of the many reasons I always pick JetBlue as my first choice for air travel.

We made it home and were tucked into bed by 4:30 am. Nick with Mickey tucked safely in bed next to him and my last recollection was collapsing on my bed just trying to piece together the series of crazy but incredible  moments from a trip that made memories to last a lifetime.

So, thank you Disney for making Nick’s 16^th birthday a year he will never forget. And a huge shout out thank you to the entire staff of JetBlue for going above and beyond to make my transition home as easy as possible.

That wraps up our incredible Disney adventure. Again, if anyone has any questions about Disney travel, feel free to contact me at Julie.kidscrusaders@gmail.com . I’m not a travel agent, just a well-seasoned traveler that can give you some of the ins and outs of navigating Disney, or airports!

Until next month, in closing, I would like to share a favorite quote that applies to this entire journey that we are on (not just our Disney trip.)

“Carry out a random act of kindness, with no expectation of reward, safe in the knowledge that one day someone might do the same for you.” (Princess Diana)

Peace, love and happiness. You are never alone on your journey!

Julie

Kids Crusaders Corner

By Julie Fioravanti

This is Part 2 of Julie’s story.  Stay tuned for more in the next newsetter. 

Welcome back Crusaders! Greetings from Upstate New York where we are currently a balmy -2 degrees with expected wind chills to hit all-time lows in the (negative) – 20’s tomorrow. Needless to say, we are buried under snow that looks like it won’t melt until November at which point winter can begin once again!

Last month I left off with the first part of my solo trip to Disney with my son Nick. We had somehow managed to survive our pirate adventures and were about to embark on the rest of our day. So welcome back as I continue to magically relive the memories from a truly great trip.

Nick and I continued our journey through the Magic Kingdom. As the day progressed, transfers onto rides became easier, and everything seemed to just flow without difficulty. The weather was beautiful, Nick was beyond happy and I was over the moon to be spending this time with him. We did his favorite rides, with Disney allowing him to stay on each ride for as many times as he wanted; to eliminate the need for me to keep transferring him and waiting again. It’s A Small World became extremely small with an all-time record (for us) of circling around 9 times. (While this made Nick extremely happy, I do not recommend doing this without a break as the catchy theme song will remain stuck in your head for many, many months in multiple languages.) We rode The Many Adventures of Winnie the Pooh 6 times consecutively (which I loved because he didn’t have to transfer out of his wheelchair and I happen to be a lifelong Pooh fan.) And a fairly new attraction (at least for our visit) was called Monsters, Inc. Laugh Floor. This was an interactive attraction in a theater like setting where you watched a screen with characters from the movie Monsters Inc. Featuring the great Sulley and Mike Wazowski, each show was adlibbed to joke around with the audience. One lucky (or unlucky, depending on your view) audience member was projected up onto the large screen and in good jest (Disney style) highlighted to be the brunt of all the jokes. The fun part of this attraction was that you could repeatedly sit through it (which we did 5 times before dinner and once after) and the jokes were never the same. It was always funny and always entertaining.

After our 5^th time sitting through Monsters Inc., we headed towards the Crystal Palace to see if there was any remote possibility of getting a dinner reservation. This is a fine dining restaurant complete with characters (Winnie the Pooh, Piglet, Tigger and Eeyore) which usually requires advanced reservations up to 6 months in advance, which of course I had not done. I approached the hostess station and explained that I did not have reservations but was wondering if there was any possible way we could sneak in a reservation for 2. It was early in the evening and I thought there might be a chance. She apologized and said that there was not. A little disappointed, I turned Nick’s wheelchair around to leave when a manager approached me asking me if I had been taken care of. I explained that I had; however, I had not made reservations as this was a surprise 16^th birthday trip for my son. He asked me to wait for a few moments and then he returned. He said he would be happy to accommodate us for dinner if we could wait for just 10 minutes while they prepared a table. And the magic just kept getting more magical. Precisely 10 minutes later he asked me to follow him. As we turned a corner in the restaurant there was a table “prepared” for Nicks birthday, complete with balloons, streamers and Mickey Mouse confetti strewn all over the table. It was difficult to hold back the tears as I realized just how perfect this trip truly was. We enjoyed an amazing dinner, we had all of the characters sign a birthday card for Nick and dance at our table and then one of the waitresses asked Nick who his favorite character was. His answer, of course, was Mickey. The poor waitress looked shattered as she tried explaining to Nick that Mickey wasn’t at that restaurant that night. I reassured her we had been to the park many times and it was ok. As we were preparing to leave, a group of waitresses came around the corner to our table carrying a life sized stuffed Mickey. I thought this was so sweet that they went and got this to “show” Nick so he didn’t miss out on his favorite character. Oh, but I was so wrong. Before I could say anything, they asked Nick if he would like to HAVE Mickey for his birthday present. (Believe me and forgive me if I sound ungrateful, because I was not…I was just surprised that they didn’t bring a smaller, perhaps more easy to transport around birthday souvenir.) Nick immediately lit up and was laughing and waving his arms and legs out of sheer happiness. The mother at the table behind me started crying. The waitresses were crying and hugging me and I felt like crying because I couldn’t really wrap my head around how I was supposed to push Nick in his wheelchair, keep track of his belongings bag that was strapped to the back of his chair and somehow carry this life sized mouse around the park and back to the hotel by myself. But it was no doubt a magical moment. And just when I thought the magic couldn’t possibly get any more magical, the manager stopped me on the way out to ask how everything was. I hugged him and choked back my tears, still hugging this life sized mouse and said “thank you”. He said he had one more thing for Nick. He took out a large button that said Happy Birthday on the top and Walt Disney World on the bottom and a white space in the middle where he hand wrote in black sharpie marker Nick’s 16^th. We pinned this on his chest harness and there was no missing it (precisely Disney’s point). What I didn’t know then, but was educated by hotel staff later that night, was that the pin was a way of alerting all cast members in the park that we were celebrating something special. And from the moment we left the restaurant, I was completely baffled by what happened next. Anywhere we walked, cast members came up and wished Nick a Happy Birthday. Cast vendors gave Nick so many things, from trading pins to light up wands, all free. By this point it was getting late and I wanted to get Nick back to the hotel with this giant mouse. Nick didn’t want to leave (why would he??) so we compromised and I allowed him to pick one more ride or attraction that he wanted to do and then we would leave. So, he picked Monsters Inc., again. I was pleased with his pick because it was relatively close to where we already were and I didn’t have to fight with the mouse. By this point I had strapped the mouse onto Nicks lap, tilted his wheelchair back so I could see where I was going and made our way to the attraction. The same cast members greeted us, and I assumed we would be sitting in the same wheelchair seating as before. Nope. This time we were stopped at the attraction and asked to wait. They let us in first but sat us in a center location which was also a wheelchair location. After the rest of the people were let into the theater, I sat back to just relax for a few moments and absorb everything that had just happened in the past hour. The lights dimmed and the show started. I was half paying attention as I was beyond exhausted. Sulley and Mike came on the screen telling some new jokes and Nick was laughing with the mouse still strapped on his lap. And just as I felt my eyes fluttering shut, the character voices yelled out “We have a special guest in the house tonight folks” (at which point my eyes jolted open and I thought, oh no, please no.)…they continued “everybody on the count of 3, please extend a big Happy 16^th Birthday to Nick!!” (At which point the camera was on Nick and there he was, he and his life sized mouse, on the bigger than life screen for all to see.) Everyone in the theater yelled HAPPY BIRTHDAY NICK, which of course startled him. He was already flailing his arms and legs because he had seen himself on the screen. The startle response from the overwhelming wishes did him in. His wheelchair had already been tipped back at an angle so I could see to push it, so the flailing arms and startle response caused the wheelchair to tip completely over backwards so his feet were up in the air still wiggling away in laughter and I was ready to just cry. And the show didn’t stop. Sulley and Mike voiced over the screen “look at those happy birthday toes” as the camera was still rolling and all you could see on the screen were his feet (they were truly not helping the situation at this point.) People were immediately concerned but then realized he was fine and just laughing, so with the assistance of a few strong men we were able to get him upright again.

He laughed all the way back to the hotel. And everyone on the bus wished him a Happy Birthday which was a nice, quiet ending (or so I thought) to a perfect day. As we made our way through the hotel lobby, the cast members at the desk stopped us to ask how our day went. I recapped the highlights and they asked if we were going right to our room. I said we were stopping in the cafeteria to grab a drink and then heading straight to the room. It took less than 10 minutes to get from the cafeteria to the room. I noticed as I approached the room that all of the lights were on inside. As I opened the door, we found yet more Disney Magic. The bed was decorated with balloons and on the table were 2 cupcakes and a birthday card from the hotel staff. How they managed that in 10 minutes is still a mystery.

Nick was exhausted and more than happy to be in bed. I had the luxury of sleeping in the chair next to the bed because Nick’s new best friend, life sized Mickey, was next to him and there was no negotiating this with Nick. Fair enough. It was a magical, exhausting day from start to finish.

We spent the next day exploring Downtown Disney and enjoying some shopping before having an early dinner. We had one last evening dip in the pool before having to pack for our departure home the next day.

It was the best birthday ever and memories that I wouldn’t trade for anything in the world. But our story doesn’t end here. (Honestly, did you think it would???) Stay tuned until next month where I will share the adventures of trying to air travel with a life sized mouse…..(trust me you don’t want to miss it!)

Until next month, think Spring, hug the ones you love, reach out and do something kind for someone randomly and know that the little things you perceive in life can truly be forever big things in someone else’s life.

Live, laugh, love.

Julie

Kids Crusaders Corner

By Julie Fioravanti

 One of the greatest joys I have learned on my journey of raising a child with special needs is the magic of “paying things forward.” The act of doing something for someone who least expects it, without expecting anything in return. Often on this journey there is great joy in knowing that the smallest act of kindness can truly turn a person’s life around.We have always been blessed by people that surround us in times of crisis with Nick and that feeling of knowing we are not alone has often been the lifeline that has saved us. Being conscious of being that kind of person for others has always been at the forefront of my daily living. It doesn’t require the act of kindness to be limited to someone with special needs. Truth be told, we all have special needs. We all have really bad days that can be turned around by someone taking a few extra seconds to acknowledge our presence. I read a quote once that has stuck with me. It said “Some of the shells that wash up on the beach were once very beautiful. You never know what kind of journey they had to take to get them in the fragile shape they are now in. Same with people. Be kind.”

Being the pay it forward kind of person that I tend to be, I am never one to expect things from anyone. In fact, during my own personal darkest moments, I often find the greatest light in reaching out to help others. I’m notorious for paying for the coffee at the drive up window for the car behind me, or leaving sticky notes on someone’s desk or car with a positive quote or saying. It’s just a feel good thing knowing that you possibly made a difference in someone else’s life

.

We recently returned from a much needed vacation. We had not been on a family vacation for over 4 years due to some pretty severe medical issues with Nick that required major reconstructive surgery. We planned a vacation for last September only to have to cancel it after I had been in a major car accident which totaled my car and left me with a fractured leg. Our reservation was non-refundable and I had not purchased trip insurance. The owner of the condo that we were renting was very nice and stated that under the circumstances she would fully refund our cost. I was so thankful and promised we would book again the following year once I had healed, which we did. This time I purchased the trip insurance, just in case. And as life would have it, my mom passed away 2 days before we were supposed to leave for our vacation. Feeling very defeated in so many ways, I was truly at a loss as to what I was supposed to do. The owner of the condo would have gladly refunded our money again, but we were unable to push out the scheduled week due to restrictions with our school district. She worked with us and was able to push off our arrival date so that I could be home for my dad to help him with arrangements and we all were in agreement that my mom would have wanted us to still go.

It was a difficult decision, but we chose to do just that. We arrived at our destination an hour before sunset. My mom’s hobby was painting. Her specialty was sunsets and lighthouses. As we sat on the beach watching the most beautiful sunset that first night, I couldn’t help but think that was my mom painting for us, telling us everything would be ok.

We made the most out of our vacation. Some days felt more somber than others. Calls from my dad back home were the hardest. But we tried to focus on our family time and the much needed break away from the stress we had been living. The Beach Patrol in Cape May, New Jersey where we stayed, was kind enough to lend us a water wheelchair so that Nick could experience being in the ocean for the first time in his life. His screeches of laughter echoed into the wind with every crashing wave. A random act of kindness from the beach patrol turned our day around and made it very special. By the end of the week we were ready to start our 8 hour car ride home, with 2 separate vehicles as we obviously don’t travel lightly.

The best option was to stop for a good breakfast before getting on the road. We had driven around all the tourist spots and just really didn’t feel like spending a fortune at these obvious places with big neon letters screaming PANCAKE HOUSE. We had done that before only to be disappointed with the food. As luck would have it I had remembered passing a small restaurant on the side of the road where we had stopped for gas. On the side of the building was a small sign that said Rio Grande Diner. Ah, a place where the locals ate. Jackpot! I immediately noticed there was a ramp to the front door and although the parking lot was full, people seemed to be coming and going at a regular pace.

Once inside we were greeted by such friendly staff. You could tell that it was a place where everyone seemed to know everyone. The man at the register immediately asked me where the best place would be to seat us to accommodate Nick’s wheelchair (which impressed me even more than the huge plates of homemade food being carried past us, convincing me that this had been the best vacation find ever!)

We were seated in less than 10 minutes. Our waitress was extremely friendly and had asked us all about our vacation. People seated around us knew the staff by names. It was a place that just felt like home. We had ordered an army of food to prepare us for our impending long car ride. The food was beyond delicious. The service made it taste even better. As we were finishing up our meal and waiting for our check, our waitress came back and said “Have a safe trip home. It was nice meeting you. And your check has been taken care of. You are all set.” With that she made a quick departure into the kitchen leaving me quietly confused and looking around the restaurant. Nobody seemed to be looking at us, so, more confusion. When the waitress reappeared, I asked her who had taken care of our check. She smiled and said the owner had.

It clicked that the owner was the man at the register that had greeted us upon arrival. I asked the waitress to ask him to come over and talk to us. My kids looked at me and said “Mom. Are you crying?” (Yeah, not something I openly do.) He came over and hugged me and said “Don’t cry, you are going to make me cry.” He then walked over to Nick and kissed him on the forehead. He proceeded to tell us that his nephew has Cerebral Palsy and Hydrocephalus. He is 7 years old and has had 17 brain surgeries. As he stood there hugging Nick and calling him “family,” there was nothing to stop my tears. It was truly a random act of kindness that I never saw coming and has touched my heart forever.

In this fast-paced, electronic world we live in, nothing can ever compare to the warm embrace that I felt that day. The feeling of knowing that family is everywhere. It is who we choose and who chooses us. And that day the world became a much smaller place; a safe place with kind hearts and unconditional love and understanding. You never know the journey that someone has been on. Be kind. And know that you are never alone.

Peace and love until next month….Julie

The Miami Foundation is having their 3^rd annual Give Miami Day on November 20, 2014.  The event starts at midnight on November 20^th and lasts for 24 hours. Disability Independence group will be a part of this amazing event.  Support DIG and join the movement.  http://givemiamiday.org/#npo/disability-independence-group-inc