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Keeping Your Child with Disabilities Safe During Summertime Fun - from our Guest Blogger Sean

7/12/2016

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Summertime can be tons of fun for families; park playdates, trips to the swimming pool, and vacations to the beach are things many of us look forward to every year once school is out. However, for the parent of a child with disabilities, summertime activities can come with a whole new set of worries as their child is exposed to new dangers and unfamiliar places.
 
Disabilities come in many different forms; some children have physical impairments such as vision or hearing loss, which means you need to tailor their safety needs depending on how they receive information. Others have trouble processing pain, so they may not realize that a particular activity is unsafe. Here are some things to think about this summer as your family prepares for fun or travel.
 
Playground safety
 
Playground equipment can provide hours of fun for kids, but it’s important to explore the area yourself first to make sure there are no sharp edges or hot metal (slides are a major culprit during hot summer days). Take a look around the perimeter to make sure there are no broken pieces of equipment or tripping hazards and address as needed. Areas filled with mulch, sand, or other soft materials are preferable over gravel or concrete. Finally, simply being present and aware of your child’s activities while they play is invaluable. It’s important to make sure your child is rested; tiredness can contribute to slow reactions or attention deficit, which can be dangerous should your child fall or injure themselves.
 
Water safety
 
Pools, beaches, and lakes are always great destinations for families in the summer, but there are a few things to think about outside of general water safety where a child with disabilities is concerned. According to the CDC, many items of safety equipment may need to be specially fitted for your child, such as life jackets. If you’ll be going out on a boat, you may need to prepare to have a harness or seat belt to keep your child safely contained in their seat. Many of the bigger beaches offer ramps or boardwalks that will be fine for wheelchairs, but sandy areas often aren’t. You may need to do a bit of research before your trip to find out what you need to bring for the ultimate safety and comfort of your child.
 
Staying in hotels or with family
 
Staying in a hotel can be a relaxing experience for many; no dishes to wash or laundry to do, and room service when you don’t feel like going out. If you’re staying with a child who has a disability, however, it’s important to make sure the room is equipped with anything they might need in case of an emergency. Do the fire alarms have strobe lights for the hearing impaired? Does the shower have a safety rail and firm rubber mat? If there is a swimming pool, is the area kept secured so children can’t wander over? Are the doorways wide enough to accommodate a wheelchair?
 
Staying in an unfamiliar home can present an entirely different set of issues, including toys that may be choking hazards and unsafe kitchen implements that need to be put up. It’s important to talk with your hosts to make sure they’re aware of your child’s needs, especially if they have food allergies. Also, talk with your child about where you’re staying and let them know of any safety issues and what to do in case of an emergency. For children who have trouble with communication, it’s imperative to talk to them about their surroundings because they may not be able to tell someone--perhaps in your absence--that they are in danger.
 
Sports
 
Summertime sports can be big fun for kids of almost any age, and they’re also a wonderful boost to self-esteem and can help little ones in being social. It’s important to communicate with coaches and teachers about your child’s needs before they get started, especially if a learning disability could make things complicated down the line. Some equipment may need to be adjusted for your child, as well.
 
Summertime can be fun for your whole family, no matter what their needs or abilities are. Keeping these tips in mind can help you relax a little knowing that your loved one is taken care of.
 
Sean Morris is a former social worker turned stay-at-home dad. He knows what it’s like to juggle family and career. He did it for years until deciding to become a stay-at-home dad after the birth of his son. Though he loved his career in social work, he has found this additional time with his kids to be the most rewarding experience of his life. He began writing for LearnFit.org to share his experiences and to help guide anyone struggling to find the best path for their life, career, and/or family.
Photo by Pixabay via AdinaVoicu
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​We're Partnering With The Mighty!

7/9/2016

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We're thrilled to announce a new partnership that will bring our resources in front of The Mighty's wide-reaching readership. We will now have a growing home page on The Mighty and appear on many stories on the site.

The Mighty is a story-based health community focused on improving the lives of people facing disease, disorder, mental illness and disability. More than half of Americans are facing serious health conditions or medical issues. They want more than information. They want to be inspired. The Mighty publishes real stories about real people facing real challenges.

We're dedicated to helping people with chronic and life-threatening illnesses in their lives. With this partnership, we'll be able to help even more people. Many of our families have submitted stories to The Mighty about their personal experiences and I am always amazed at the articles that I have read from the families we have served. 

Over the last several years I find myself reading more personal stories, thank you letters, informational articles that have all been republished by The Mighty from people around the globe. Having a son diagnosed with Autism some of the first articles I read after his diagnosis came from The Mighty. 

We've yet to submit a story ourselves, mostly because I didn't realize we could, but maybe one day you'll see one of our stories published there too! In the meantime we look forward to bringing new stories to our families each week.

We encourage you to submit a story
to The Mighty and make your voice heard.

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Finn-tastic Shark Week at UVA

7/8/2016

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A HUGE THANK YOU - to everyone who helped us make the shark week gowns for the NICU and PICU happen! Because of each of your donations we were not only able to make 63 gowns from the shark fabric, but an additional 8 gowns for specific children that were admitted the day Kelly, Finn, his nurse and myself went up to UVA. 

We visited H-Pod inside the NICU and please excuse my hot mess of a self...I was barely a week without my wound-vac and honestly was running on less than four hours of actual sleep on top of being an emotional mess knowing what we would be doing and the fact I was officially engaged as of the evening before too...it was so worth it on all accounts...no regrets whatsoever, and honestly I knew I was going to be a hot mess before I even got back to my car after we delivered the gowns and met with each family. Every home or hospital visit is the greatest moment for me, but also emotionally the hardest too.

Moving on about me - let's talk a little about some of our wonderful families we met! OH before I forget, let me tell you what, all of the Neonatologists that we talked to in the NICU absolutely LOVED the smocks and gowns. That was another amazing moment when they were asking how they worked and then of course one was so awesome to take this picture of us together. 

Over in the PICU we met five of the eight families - and they were all pretty much right in a row without skipping many rooms in between. It was awesome and heartbreaking at the same time. Each of these sweet kiddos was born with one congenital heart defect or more in addition some even have other complex or rare medical diagnoses. Each room is an individual room and can be made into a satellite OR if necessary (on a small scale), but at the same time they each have someone within ear shot or even an arm's reach if needed.

When I visit in the hospital, I am very picky about what photos we take (even with permission) and then what ones I post. Many of these precious heroes having multiple tubes, wires, cords, surgery sites, etc. and that can be overwhelming for just about everyone. Because of that I try to not post all of it, but part of me wants to show the reality that is complex medical conditions and just what these children have not only lived through, but overcame against all odds. The raw, emotional, hit you in the gut reality of what goes on inside one of these hospital rooms. 

Once my littles go back to school in August and maybe even during the weeks they are gone over the summer, I will find myself up at the hospitals locally photographing and documenting just that...we shall see whose permission I need and how to make that happen.

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Milo was waiting for a hero heart when we met him and his parents at UVA...as many of you have seen on our Facebook page this week he passed away on the 6th. He fought so hard, he battled against all odds and his parents were by his side every minute they could be cheering him on. They themselves not only showed courage and strength, but an undying hope, a fire and passion to live each day they had together and to make every moment count. The honor and blessing is truly all mine in having met them in person.

H-Pod is inside the NICU and was the last part of our visit at UVA where we not only met families we knew about and had been talking to on Facebook, but a brand new family that I learned about the night before. Remember that four hours of sleep...yep, I was making a special gown for a baby that I just learned about hours before having to go up to the hospital. Best moment ever was seeing them laugh at the fabric and wondering whether or not it was coincidence or so devised scheme by the staff, Kelly and I to make little Stonewall (whose twin brother is name Hawkeye...why didn't I think of cool names like that for my kiddos) a firefighter hospital gown in the itty bitty newborn size I made that night as well.


This part is literally a little pod - I don't remember how many kiddos they can have in there at one time, but there is always someone less than an arm's reach away. It could be the doctors, the nurses, the aides, the therapists, another family...you name it. It is always buzzing, but it is the most reassuring place I've ever been in hospital wise. Everyone is connected and checks up on the other families inside the pod. It is a totally different world of pediatric units.
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Again, a huge thank you to everyone who helped support these special gowns - I know many of you were supporting the shark week gowns in honor of Finn and we're forever grateful for not only the ability to make them and visit with Kelly and Finn, but to be able to complete all these other special gowns for families that have grown so very near to my heart too. We have another special week planned which we will post about in August - it involves the most awesome children's author ever, funky colors, and lots of fun to say words too! We look forward to taking on such a project again and hopefully with a little more planning we can make them bigger and better each year.
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The difference a year can make

7/6/2016

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Late last summer we moved into Brandon's parents' house - for a variety of reasons, but really just because we wanted to really start blending our two families together, we needed it more than words can really even say. It has been one of the biggest life changing moments in our lives, and honestly, looking back since the end of August last year, I don't know how any of us would have survived without each other being right here. 

Moving itself was brought with so many challenges, we had to completely gut three rooms of the house and that was just the start of it...some of you may remember the challenges we faced in trying to get the last two rooms done with the flooring not going down right, not having the right size carpet and oh yeah, the 40,000 honey bees that were residing below the window sill in what was to be my little man's room. To think we almost didn't pull up the baseboards in that room. If we hadn't of done that, we wouldn't have found the water damage and in turn we wouldn't have found these cute little guys.

At that point all we could do was laugh...or cry...and in reality, we did a little of both.


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By divine intervention only, we made contact with a local bee keeping chapter and the next day these feral colony was taken a couple counties away and put into a hive that we could only hope allowed them to survive throughout the fall and winter. 

I swore that day I never wanted to see a honey bee around the house ever again...not because I didn't like them or anything, but simply because it was a true test on our sanity at that point and took up so much time that we didn't have to give right then in trying to get everyone settled into their new surrounding and get ready for the upcoming school year in addition to just all the other chaos going on at that point in time. 

Over the course of the last year, honey bees became the running joke "seriously Jessica, we survived having 40,000 bees in the house, we can make it through anything." Or even better yet the times when everything is falling apart around us and one of us says "remember that time we were renovating the bedroom and we found the bees?" Even when I was preparing for surgery, I found a pair of LuLaRoe honey bee leggings to wear for recovery...because it just became the reminder to smile, we've got this...and in every situation we've faced we try to take that same attitude. 


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Earlier, I was working in the garden before another set of crazy storms headed our way...the weeds and grass were starting to overtake parts of it, the snap peas were dead, and there's some little creature living in the bush beans that I haven't quite figured out what yet, it was hot...and humid...and I just felt like my hobby garden with the kids was a waste of time. It was started before I had surgery, May was nothing by chaos, rain and limitations and the same with most of June too...and I just have not been able to keep up with it in addition to the rest of our lives, to include the nonprofit and all of our gown requests. It has been HARD to say the least to remain positive when you see so much spiraling out of control and yet can only do so much in a day.

I sat down outside the garden and was just feeling really down about the last couple of months and how overwhelming they've been on everyone when I saw two little honey bees flying around the clover that is feeding the wild rabbits which live in the backyard. And in that moment, I smiled and remembered that we have already made it through so many terrible situations that would have broken relationships...and yet we've come out stronger than ever before. Professionally, the nonprofit has never been stronger in exposure, in gown requests being completed, in reaching out to new families and even new donors...in making a difference in the lives of children across the globe. This year has been amazing for lack of a better word to use right now. 

It is in that, I just want to say...the struggles each family is facing are REAL, the pain, the fear, the constant worry about what tomorrow will bring, the not knowing when a last breath will be taken, the everything that surrounds each of you...and while it is definitely more serious than honey bees in your house, the concept is kind of the same, look back and see how far you've come already. Even if it is nearing the end of everything you live and breathe each day for...look at that bond shared, the milestones that were met with such excitement, the good times, the closeness that has been brought not only to your family, but the community around you, because of your child's life and journey, someone else has hope, someone else has yet to give up, someone else is fighting for better treatments and cures, and someone else cares so much their heart breaks in the bad times and floods with joy in the good times with you. It isn't a lot, and no it doesn't dull the heartache, but it may just give you a reason to smile...even if it is just for a couple of seconds or the one side of your mouth.


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Embracing the chaos...instead of controlling it

7/1/2016

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Some days you just have to embrace the chaos and remember they're only little once...and in fact they really aren't that little anymore to begin with. 

Tomorrow my littlest baby turns six years old, eight days later we celebrate both girls and the oldest baby turns nine years old - last week my little man's height and weight was checked and within the next couple of years he will be my height if not taller - he turned seven in March and is already 4 feet and 3 inches tall...they're not so little at all.

For some reason I felt more compelled today than ever to force myself to understand I can battle these girls all I want over their clothing choices for the day, however...it is in these moments I get to see their unique personalities, their creativity, and even their passion for just wanting to wear pretty clothes. I've always felt it important to stress to them that "looking pretty" on the outside isn't what matters most - it is being pretty on the inside that they should strive for.

My not so-girlie, not really dress wearing, don't understand why in the world you'd want to pair these three things together AND go out in public self was ready to make her change before going to the grocery store, everything about this says "my mommy lets me dress myself," and that I might even not really care about what they're wearing - but the smile she had on her face when she was ready to head out to the store with her stepdad was the one thing I absolutely refused to destroy this morning. To the people that may gawk and make rude comments - at least they do have clothes on today...stop crushing a child's creativity and uniqueness. They're only little one, and this morning, I'm in here crying and begging almost with God to let them stay little forever in my house because the world is a cruel place and spends more time crushing the hearts of dreamers and believers in all the negative that's out there. 

Maybe...just maybe, if we spent more time building each other up, raising our children to be free-thinkers, problem solvers, dreamers, believers, and pushed more "out of the box thinking," the world the next generation is being raised in could become so much more of a wonderful place where innovations are beyond what happens inside a lab...where the innovations made really aren't anything new or exciting, but rather a revival of times long forgotten when matters of the heart and mind are at stake. 

The last two months have been hectic...professionally things have been backed up and damn near mental break down levels, personally they've surpassed mental break down levels and I find that even when things are going the absolute worse they can go - there's really only two choices. To try and control the chaos...which typically just adds more stress and wine consumption than what really is acceptable by all pertinent views, or to embrace it (within reason of course) and really let your littles see just what it means to go with the flow of life, to handle the punches one at a time and to work together to make things happen.

They're only little once, but in that "littleness" is the huge ability to learn from the actions of others...today they're learning to be themselves, to be comfortable in their own skin, to flaunt the unique person they are and how one day when they're a mommy who hasn't slept well in a week, who only wants the best for their little ones, who can't believe their littles ones have grown up so much already, who really wants them to see what love looks like, and who just needed a gentle reminder that life is perfectly imperfect in so many ways...that they will remember to embrace the chaos, even if it is just funky clothing choices on a Friday morning, and be reminded how uniquely made each child is and how perfect they are in those differences.

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