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I dare say that I have the sweetest special needs little brother. I have written about him a few times (his full story is here & why I became a pediatric nurse is here) and he is always on my Snapchat & Instagram stories. He truly is my best friend and the best thing that has ever happened to me. He has shaped me into the person that I am today, I learn more from him than I will ever learn from anyone else. I wanted to talk about another aspect of Matt that isn’t ever talked about. It is something that most people may not think of when thinking about special needs children. It is the caring for them and everything that comes with it. It is them having no dignity in having people care for them, them understanding (at least Matt does, some may not) that they will never be able to care for themselves, take a shower or sit in the bath (Matt can’t shower or bathe due to his trach which is his airway, he get’s sponge baths in bed), having to wear diapers all through his adulthood, never being able to eat (he has a tummy tube that we feed him through), and the list goes on and on. The other thing that no one talks about is the strain that it puts on the caregivers. Matt needs 24/7 care. He can never ever be left alone, like ever due to his life support. My family doesn’t see caring for Matt as a burden, but that doesn’t mean it doesn’t put a strain on my mom and dad providing care for him constantly. Their whole life revolves around Matt, is where they want to go wheelchair accessible and are the hallways wide enough for his wheelchair, planning around nursing schedules to make sure someone is always with him, moving his sweet dead-weight body back and forth to his bed and to his wheelchair multiple times per day. All of these things are hard, and you will never ever hear my mom or dad complaining about them, ever.
In caring for Matt for the past 24 years, we have learned what works for Matt, our family, and some silly things that make taking care for Matt easier. My parents have taught us that where there is a will, there is a way, and that you keep trying until you find what works for you no matter how silly it seems to be to everyone else. The biggest thing that we have figured out is his bathroom needs. Matt can’t stand up, so he wears “briefs” or diapers. We have tried brand after brand, set-up after set-up, combinations galore and finally found what works for us. So… here you have it, this is what works for us. We put a brief on him with a Member’s Mark pad for women in the inside of it. The pad helps to absorb when Matt urinates, but in purchasing the women’s sizing it is smaller than the Men’s pads for his small body frame. It makes it easier to change him when needed by just changing his pad if he hasn’t soaked through his brief, too. When we are headed to fun adventures with him, we will layer a Member’s Mark Brief over the top of the brief and the pad. This prevents him from having an accident through all the layers to his pants. This combination has changed our lives and has given Matt some of his dignity so he doesn’t have accidents through his pants.
Member’s Mark products are heaven sent to this special needs caregiving family. My mom can shop for them all at Sam’s Club, which makes it a one-stop shop for her to buy all of his items. Sam’s Club has premium items at a quality price which when you are in this for the long term run like us, that is something so important. The minute we started using them a few years ago, it was sheer relief to my family to know that we had finally found the product and the combination that works for us and works for Matt.
We get a lot of questions on how we organize Matt’s room and his caregiving supplies, so I thought I would do a little “tutorial” on what works for us, our nurses, and for Matt.
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Poorboy Rib Henley Midi Dress at Shopbop
Kylio Bag at Shopbop
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A large toolbox with drawers
Bins to fit in your toolbox drawers – We ended up using drawers from a plastic drawer stand – like I said before, you just find what works best for your circumstances
Lay out your supplies first and figure out what you want to group together. We have put all Matt’s medications together with his feeding supplies in one drawer, next is all of his ventilator tubing and extensions, the next drawer has all of his trach care supplies and hygiene products, the bottom drawer is all of his pads, briefs, and washcloths. Having a place for everything to go makes it so things get put back in the correct spot (most of the time) too. This helps when having nurses or other caregivers come in because they will know right where to go for certain items if they are put back correctly.
Matt doesn’t see himself any different than you and I see ourselves, and that is something that we make sure of. Keeping his privacy as much as we can, his dignity, and treating him just like you would anyone else is what is most important to us. If you know someone with special needs, just treat them the same as you would your friend. They want to joke with you, tease you, be your best friend, and talk about football games. If you take the time to really get to know them, learn from them, and be their friend, you will realize the special in special needs means something so much more than you ever think it did and how special they can make you feel.
If you have someone young or old that you care for, make sure to check out Sam’s Club Family Caregiving. They have subscription programs, pick-up services, and so much more to let you spend the time with your loved ones and taking care of them.