Drinks on a bar counter.

Going out is fun. Who doesn’t like going out for a few beers with friends? But with cerebral palsy, sometimes that can be hard, and when a few turns into a few too many it can be downright dangerous. Here are my tips for hanging out a bar or anywhere where alcohol is consumed frequently so you can enjoy yourself and others around you.

1. Know your surroundings.

When you walk into a bar, especially one you haven’t been to before, try to scout things out. Where may be the easiest place to stand or sit? Is your bartender or server coming to you? If not, maybe sit a little closer to where they are. Where’s the exit? Some bars can go casual to crammed in minutes, and it’s always easiest to know the best way in and out if this happens. Is there a back door exit that may be easier to get out than the front, and where does that lead to? If it’s an alley, you probably need to go out the front, but if it’s a street it may be easier to walk around outside than push through the center of a crowded bar.

2. Get your bartender or server’s names.

It’s mostly common courtesy, but it doesn’t hurt when asking for a favor to address someone by their name. I know sometimes after having a few and sitting for a while I stiffen up. If you have friends with you, it’s easy to ask for some help up, but if not, generally people are pretty happy to help. If they’re not, that’s not the place for you.

3. Know your limits.

This can go for anyone, but those of us with CP know one too many can throw us off physically and mentally. If you’re in a bar you have never been to before, and especially if you’re by yourself, it’s good to have a mental count of beers or drinks you’ve had. Otherwise you may just end up on the floor.

4. It’s OK sometimes to let strangers who never asked know you have CP.

Generally speaking, people are in a bar to drink and sometimes to drink a lot. I can’t tell you the amount of times I’ve had people think I was drunk before I even stepped up to the bar. I don’t why this is a drunk thing, but in my experience it definitely is. Sometimes it’s best to just get the confusion out of the way to the people around you or your bartender. This is 100 percent your discretion, but it can make things easier for people and possibly your bartender. Remember most people are just curious and too scared to ask, but if you get it out of the way sometimes it’s just easier to have a good time.

5. Falling in a bar is tough, but hey, we got this.

We all have our moments where we just fall down. In a bar, this can be downright embarrassing as well as a gateway for others to judge. Don’t worry; it’s OK. If you can get up on your own, try your best; if you can’t, communicate calmly with the people helping you. Don’t be afraid to tell the drunk guy helping you up to get someone sober so both of you don’t end up on the floor. If you’re drunk, know it and cut yourself off. Falling drunk with a disability is still falling drunk, and if you’re not careful you can harm yourself and others. If you’re not, you may have to explain yourself a little. I know this is tough, but it’s for everyone’s benefit including your own, so don’t be afraid.

6. You’re gonna get looks.

We often get those looks. The what’s wrong with that person? look. They are hurtful sometimes, but it’s just because people don’t understand. If you’re of legal drinking age, you’ve probably figured this out. You may get these looks more at bars because people think you’re drunk. This is when tip number 4 can come in handy. If you don’t want explain yourself, just press on.

7. General bar safety goes double for those with a disability.

Don’t take drinks from someone you don’t know. Who knows what’s in that thing. Don’t be afraid to refuse a drink even if handed to you by the bartender. If you’ve reached your limit and someone buys you a drink, don’t be afraid to say no thank you. Again, a sloppy drunk with a disability is still a sloppy drunk — don’t be that guy or gal. Be careful of new people. Don’t be afraid of making friends, but have your wits about you when conversing with strangers.

8. Have fun.

At the end of the day I hope you’re out to have fun. Try not to let your CP and everything that comes along with it stop you from having a good time. We all have something we have to deal with; your CP is just part of your something. Put it aside, kick back and enjoy yourself.

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Thinkstock photo by AiJohn784.

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It’s August, for many families in the United States, back-to-school season is dawning.

Every new school year holds fresh challenges for every family, from the academics to the friendships to all the other elements that comprise a typical grade-school experience. Parents want the best for their kids and will go to great lengths to ensure their children have all the tools, knowledge and social savvy they need to be successful, popular and well-regarded by peers and teachers alike.

For parents raising children with disabilities, back-to-school season is a little harder than it is for parents of able-bodied or neurotypical children. There’s always a nagging fear of bullying, academic difficulty, issues with mobility and more.

Will your child’s classmates treat your child like a friend or like a prop? Will the child’s teachers be helpful and kind? Preparing both, yourself and your child for the fresh school requires a whole different plane of preparation and forethought, and even then, you find yourself at the mercy of the school culture itself.

The most important thing you can do to prep your child for the new school year is to encourage their confidence. As much as we wish it were different, we can’t email the parents of every single classmate with a list of dos and don’t for how their children should treat your child. We can’t force kids to be nice, and we certainly can’t shield our children from the realities that some kids will be rude or even straight-up mean to them.

 

What we can do is encourage them daily and remind them of who they are. Praise your child every day leading up to school for their positive attitude, their bright smile or their generosity. As the old saying goes, if you say something long enough, you’ll start to believe it. Make sure your child is confident in who they are — from their personalities to their disabilities — before other students try to define reality for them.

My grandson Elijah, who has Cerebral Palsy, is one of the kindest boys you’ll ever meet, and his love of reading knows no bounds. My family and I remind him all the time we love him for who he is, from his affable demeanor to his physical differences. We want him to be as confident as possible in who he is.

As you shop for back-to-school items, encourage your child to define their own style. Maybe in the past, your child has gravitated towards items with cartoon characters on them but now would rather explore abstract patterns. Let your child be confident in who they are and express themselves how they see fit. Throughout the school year, they’ll face enough people telling them what they should do and who they should be, but as the parent, you can guide your child through self-discovery and continue to offer moral support as your child navigates their personal identity.

Back to school season can be tough, but teaching your child self-love and confidence will certainly make it easier.

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Dear Idina Menzel,

I discovered your album “I Stand” right before my Mom got diagnosed with cancer for the first time. I instantly fell in love with every song and lyric. You were saying everything I was thinking and feeling but couldn’t articulate. You got me though those days. After a long day filled with fear, I would go into my room and watch YouTube videos of you on the “I Stand” tour. You made me laugh in every video. For a little while each day, I was able to forget the fear.

“Brave” helped to get me through. When I was trying to be strong for my whole family, I would come into my room and cry. You and your music helped to pick me back up every time. You were my strength. I saw you live for the first time with your symphony tour and laughed the entire time. You inspire me to keep auditioning for shows, to keep working in my voice lessons and singing the music I love.

I cried when I first heard “I See You.” That song is me for so many reasons. I grew up feeling alone, in hospital rooms, doctor’s offices and therapist’s offices, due to all of the treatment I needed for my physical disability, cerebral palsy. I felt like nobody really saw me and understood me. You did. That song showed me again and again.

Another song that means so much to me is “Like Lighting.” I have generalized anxiety disorder. It is an everyday challenge to believe in myself and trust myself. You are saying everything my younger self needed to hear and that I need to hear now. You inspire me to continue to work towards being the the best version of myself I can be, and to believe in myself. You inspire me every single day. Thank you for seeing me. Thank you for always being here for me. I love you so much!

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Photo via Idina Menzel Facebook page.


I love back to school season! I’m starting my fourth year of university in the fall, but I remember clearly what it was like to be a first year: those first few weeks are a lot to take in. There’s not a place on campus which isn’t filled with activity. It’s exciting and scary. Lectures can be an adjustment. Even for the academically- minded, it’s easy to feel small on a campus of thousands. If you have a disability, like me, you’ve got a few other things to think about. Here are my top five tips to help first years adjust to life on campus:

1. Get in touch with your campus disability services for students. On my campus this is called DSS, but it might be different for you. These fabulous folks will be an irreplaceable ally for you over the course of your studies. They supply resources, can help with academic appeals, and offer volunteer opportunities, as well as a myriad of other services! Talk to them about your needs and abilities.

2. Get involved. I say this to everyone who asks! You’ve got an interest in something, be it video games, acting, visual art and design, social justice, religious organizations, sports: you name it, there’s probably a club for it! Many campuses have booths set up advertising clubs during Welcome Week, so make some time to check them out and find something that meets your interests. These clubs are a great way to meet new people, make friends, de-stress after a difficult class, and may even help you choose your major! Don’t hesitate to get involved, but be sure to take care, which leads me to my next point…

3. Don’t overextend yourself. The beauty of a university program is that you are in charge of your scheduling. Don’t schedule an 8:30 a.m. class if you’re not a morning person. Don’t schedule night classes if you know you’ll be exhausted. Don’t get a job (or second, third or fourth job) if you don’t have the time / transportation abilities / energy to make it work. Don’t join a bunch of clubs if you don’t have time for them all. Leave enough time in the day to do homework and reading, and enough time between classes to get from place to place. My campus is huge, and the winters are cold. The worst part of the student experience is having to dash across campus in 10 minutes in the middle of winter to get to class on time, and my cerebral palsy throws a figurative wrench into an already not ideal situation. You can control how many classes you take each term, so don’t pressure yourself into taking a full course load every term if you don’t think you can handle it. The whole “4 year degree program” thing is just a guideline. There’s no rush.

4. Don’t be afraid to ask for help if you need it. Professors and TAs are reasonable people most of the time. They shouldn’t have a problem accommodating the needs of their students; it’s part of the job. If you find your prof isn’t accommodating, that is where one of the areas Disability Services can step in — but when in doubt, ask for help!

5. Stay healthy. This will differ for everyone, depending on your condition and its severity, but here’s what I can recommend. Drink water, not just coffee or energy drinks. Eat healthy food, and eat when you are hungry. You’re not constricted to set lunch times in college — you can even sometimes eat during your lectures! (Just as long as the class in question is a lecture, not a lab, and please save particularly crunchy or smelly foods for another time — your classmates will thank you!) Take medications and try to go to appointments. Don’t use all your spoons in one go before your 8:30 a.m. lecture. Work out if you can, but do what’s right for you. Get enough sleep. Mental health is important too, even if you don’t have a mental health condition: find ways to de-stress, and practice self-care. Find a couple of “long ways,” like taking a bath or watching movies, and a couple of “short ways,” like meditation and breathing exercises. There will be stress, and you’ll need to begin to practice healthy ways to deal with it. There are people out there who talk about self care better than I do, so keep an ear to the ground and remember that self-care isn’t one size fits all. Find what works for you. Above all, listen to your body — working with it instead of against it will give you more energy in the long run.

Congratulations on your acceptance to your program. Best of luck with your year! Bring what makes you unique to the forefront — that’s what makes you strong!

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Dear Cerebral Palsy,

We haven’t always been friends, but I am grateful to you for many things. I spent most of my childhood in PT, OT, aquatic therapy etc. I hated it then, but now I am grateful I had the opportunity because it’s given me the ability to walk and the experience to help others. Once upon a time I felt so alone because of you, and I just used to pray no one would notice you. But again, this has given me the ability to use my experience to help others through my page and the #CPDreamTeam t-shirts, and in my community as well.

The struggles, have been many and I won’t lie and say things are easy even now, but because of you I am a stronger, kinder, wiser person. I still struggle on a daily basis with frustration, but do my best to remain positive and focus on my strengths rather than my weaknesses. Because of you I was picked on; again, this only makes me want to make a change in this world for others, because so many people don’t get it that it’s OK to be different. No, it has not been easy, but I have learned to accept you and amazingly the one thing I hoped no one would notice is what now helps me shine a light for the world to see. I believe God makes no mistakes, and I have CP for a reason. I believe everyone has a purpose and I think to help others through my CP is mine. I won’t lie, on pageant days I would love to effortlessly glide across the floor like the other girls, but it’s not happening and that’s OK.

In closing, there is nothing I would change about my life. Without you, I would not have found some of the most amazing people, and though they are not blood, they are my family. Through my weakness I found my strength, and I will focus not on what I can’t do, but on what I can. I choose to be happy and positive because life is beautiful and meant to be lived to the fullest. I hope my life helps someone else know that no matter what obstacles you face, you can still follow your dreams and reach for the stars!

Love,

Heaven

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“Life is pain, highness. Anyone who says differently is selling something.” -William Goldman, “The Princess Bride”

Much of my life revolves around the concept of pain. As human beings, we all experience pain in our lives, whether physical or emotional. In this way, we are alike. There are those who stuff their pain, those who wear their pain like a badge, and those somewhere in between. I used to think I was someone who wore pain like a badge. And then I realized: I was born into pain. I had months of capillary blood draws, IVs and treatments as a premature infant. I know I experienced pain in my earliest moments. I had years of falls, injuries, therapies and muscle pain before I even knew how to express what pain was. In this way, we may be very different from each other.

I have pain every day, and hiding my response to it from those around me is my ultimate goal. But imagine for a moment if you had something that was a part of your entire existence and you could never talk about it for fear of looking like a hypochondriac or a Debbie Downer. Imagine you went to work every day and yet could never talk about work stuff to anyone. Ever. Imagine if you were dealing with regular work stuff and then things got intense at work, and still you could not talk about it. And then you realized that by sharing your life, even the bad stuff at work, allowed you to keep putting one foot in front of the other; showing up when everything inside you was saying, “Quit.” This is chronic pain for me.

I try to focus on the positive, which I believe is very important when living with a disability and chronic pain. That being said, some days (or weeks) I have to let it out. I have to share the reality of my life with people around me. Thankfully, I have had a huge amount of support from people around me. I have also had people in my life walk away because my pain was too much for them to handle. And to that I say, “it’s good to know your limits and maybe walking away was the best thing for both of us.”

I think positive thoughts only get us so far. I have probably done more “positive therapies” than you can even think of. If it’s out there, chances are I have done it. So please don’t ask me “Have you tried (technique, therapy, exercise, etc.)?” Because unlike you, I live with my disability every single solitary day, have thought about it far more than you have, and have seen more practitioners in the first four years of my life than you probably have in your entire existence.

As someone who cares about me, things you can do to support me are phone calls or texts (which may go unanswered and it doesn’t mean I don’t love you), responses to my social media posts that are validating and supportive, visiting or scheduling time to spend together, and letting me know that even though I may have to cancel or reschedule, you recognize it’s not about you. It’s because I am hurting so badly that this extrovert who loves parties and get-togethers has to decline because standing or sitting is impossible.

This brings me to another aspect of my disability: Falling and the Moro reflex. Having cerebral palsy (spastic diplegia) is not just about my legs not working exactly like yours. There is an aspect of CP that is hard-wired into the area of the brain that has been damaged. There is a reflex that newborns have called the “startle reflex,” known medically as the Moro reflex. In people with CP, that reflex never shuts off as it does in people without CP. So when I hear a loud noise, or get surprised by something, I jump figuratively through the roof. This reflex also contributes to a heightened level of anxietyall the time. This causes me to have anxiety when I am in large groups of people, or walking in public without a mobility aid (AKA something to let other people know I am not as stable as I look).

This fear of falling is very real and very anxiety-provoking. Between January 2015 and July 2017, I had a total of five falls. Amazingly enough, that number is down from my year of most falls, 2009, when I fell seven times in three weeks. So again, this girl who loves parties, people and being out in public may have to decline because the risk of falling is real.

One of the most difficult challenges for me is that I don’t feel “disabled.” I live in the grey area of “you don’t look disabled” and “I would have never known you have CP” as well as my personal favorite from a doctor, “You don’t have CP. You’re not disabled enough.” But I can’t do basic tasks without considering my pain level, such as cleaning house without killing my body, working a full shift at work, walking the dogs, or having sex with my spouse without thinking about how much of a toll it takes. Can I do this particular activity today or does it have to wait until I have a day off of work so I can spend the day in bed recovering? These are things people with disabilities and chronic pain think about every single day. When I hear, “You’re such an inspiration!” I throw up a little bit in my mouth. I feel it’s a more polite way of saying, “Wow, I’m glad I’m not you.”

The internet and social media have allowed us as a society to connect as never before. I have also learned through my experiences in real life as well through Internet research that there are virtually no medical studies on aging and cerebral palsy. Even support groups like United Cerebral Palsy and Cerebral Palsy Foundation tend to focus on kids with CP. Once you’re 21 or older it’s like you no longer exist. Google “cerebral palsy” and see what comes up. I bet it’s 99.9 percent articles on kids. And the “articles” on adults are mainly blog posts of other adults with CP searching for answers.

According to medical research, CP is not a progressive disorder. Meaning my brain damage will not change. But living in this body for 45 years has taught me that the effects of CP are progressive. Things that affect other non-CP aging individuals like arthritis and muscle atrophy tend to affect people with CP more rapidly and at an earlier age. They are also more difficult to deal with in a body with spasticity.

The falls I experienced caused me to have emergency spinal cord compression twice (at age 29 and age 35) and because of these spinal cord injuries, I have chronic problems with my nerve impulses, blood pressure and pulse, as well as pain, lack of motion in my neck and difficulties with my arms that were not there prior to surgery. That being said, give me pain over paralysis any day of the week. My point in sharing this is that sometimes the choice of someone who has a chronic disability is between rough or hellish. I’d pick rough, given those two options. But I’d much rather pick something other than rough or hellish, like cake-walk or rainbows and butterflies.

So, if you see me with my cane, and I’m out of the house, chances are I’m doing pretty OK. If you see me gripping my husband’s hand or arm, maybe it’s a rough moment. If you see me with my walker, know that I’m doing good just to be out of the house. If I’m apologetically cancelling on you at the last minute, know that I’m probably at home crying, wishing I could throw an impromptu party at my house because I hate having to cancel or not be around my friends just because my body is not cooperating. But chances are I’m thinking about how much I’ll be judged for my messy house that needs a new paint job, wallpaper torn out, new window coverings, a backyard that needs a total makeover, and four pets that have to greet every new visitor like they are their best friend. And throw in that I can’t do most of the fix-it things that you do without even thinking about it, so I don’t have many guests over to my house.

But those are my hang-ups and anxieties. We all have them. We all have things we wish we could change. In that way we are alike. People with disabilities are not unlike you. We all have things we wish we could change. We all have times when we’re feeling not 100 percent. But for those of us in the land of “grey disability,” where our disability seems invisible most of the time, we can struggle to figure out where to fit in, even at my age. And now, as I write this during a recovery process that I hope will be short-lived, I am hopeful my land of “grey disability” becomes less grey in the coming days.

This article originally appeared on Order Out of Chaos.

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