Respite provider drawing with child.

4 Reasons Caregiver Respite Is Important

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Respite is frequently one of the first services offered to families once their baby is diagnosed with one or more disabling conditions. Sometimes parents don’t want that service. They might have close family nearby who can give them a break now and then, and feel they don’t need the respite. I know, because over 24 years ago when my daughter was diagnosed with Aicardi syndrome and began receiving services through our state’s division of developmental disabilities, I didn’t want respite. The thought of leaving my fragile baby in the care of a stranger was frightening.  At the urging of the program social worker, and after speaking to some parents who were using the respite program, we decided to give it a try. I am glad we did, and in retrospect I can see how important it was for our family, for our daughter, and for me.  Here are four ways you can benefit from respite.

1. Reconnect with your spouse.

Although it may seem that only a few hours a month is not enough time to do anything, it is enough time to reconnect with your spouse.  A “date” with your partner doesn’t have to be anything elaborate, nor does it have to be in the evening.  It can be going for coffee in the afternoon, out for a drive, or to the library together.  The point is to be together without any interruptions. Even if you spend the whole time talking about your child, it’s good to be able to express your feelings and discuss your ideas for dealing with things together. Of course, you may want to talk about other things, reminisce or just listen to music. Whatever helps you feel like a couple again. After all, you may have some trying times ahead and if you already feel connected it might make them a little easier to get through.

2. Give your other children some one-on-one attention.

If you have other children, it is good to give them a little time to be with you where they feel they have your undivided attention. Sometimes when one child has many needs their sibling can feel forgotten and unimportant. Siblings need to know they are important and can express to you any feelings they might have about how your family functions, but might not feel comfortable doing so in front of their sibling.  It doesn’t have to be anything lavish, or a “let’s sit and talk” kind of thing. The point is to simply give them your full attention for a little while; just coloring together, or riding bikes, going for ice cream or taking a walk are good ways to let them know they are important to you and give them time to open up about their feelings.

3.  Remember who you are.

Besides being a parent, it’s easy to get lost in all the new roles your child’s diagnosis brings you: nurse, therapist, advocate, and teacher may be some of them. After a while you might forget who you are underneath all of that.  You also might get burned out, which might lead to depression, and a feeling of impending doom. When you are switching between one role and another, day and night without a break, it can be overwhelming. Respite can give you time to do something you enjoy such as read a book, meet a friend for coffee, go to the gym, or take a nap.  If you feel the need, it can give you time to see a counselor to learn techniques to deal with thoughts or emotions you may have; sometimes talking to someone with no emotional investment in your situation can be beneficial. Respite hours can give you a chance to engage in an activity you liked doing before your world changed. It can be a tool for self- preservation and personal growth. Recharging your energy is an important part of meeting the daily challenges caring for your child may bring.

4. Your child’s independence.

As hard as it can be to imagine, especially in the beginning, your child needs to be independent of you; it’s an important lesson for both of you to learn.  Perhaps it will never be possible to have complete independence, but even for short periods of time, you and your child need to know that someone else can meet their needs and keep them safe. Whether your respite person is a family member, a nurse, or a health aide from an agency, it’s important for your child to know they will be safe and cared for when you have to be away from them, and that you will come back. It’s also important for you to have the peace of mind that comes from knowing that if you must be away for a little while, your child will be comfortable in someone else’s care. It takes away some of the stress you might feel being separated from your child.

Starting respite early in this different kind of life also lays the foundation for schooling.  If you choose to send your child to school rather than homes chool, you both need to be used to being apart for a few hours with someone else giving your child care. If you home school, they’ll still have therapies and other activities where you may not always be present. Giving your child the chance to meet people on their own terms can help you both grow and thrive. We all need to have contact with various types of people in life, and using respite programs can be a safe way to help children experience that.

In the beginning, it can be difficult to imagine giving your child’s care over to someone else for any period of time for any reason. Using respite services can be a part of giving good care to them. By giving you a break, respite can help you find perspective about your situation and see the good things, rather than focusing on the practical ones. Caring for yourself and other family members can reduce everyone’s stress level and make it easier to deal with the frustrations and challenges that are part of family life with a child who needs extra care, and it can help you find the joy your child brings.

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Thinkstock photo by Katarzyna Bialasiewicz.

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'Assisted Mobility' Documentary Explores How Mobility Aids Can Go Beyond Wheelchairs and Walkers

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A young film student explores disability and mobility devices in his new short documentary, “Assisted Mobility.” Taylor Lewis was born with a rare genetic condition that causes his muscles to be three times more dense than usual. This limits his flexibility and leads to fatigue and chronic pain. Lewis tried traditional mobility devices such as wheelchairs and scooters, but nothing really worked for him. Until he had the chance to try the M1 Electric Skateboard.

Since 2010, the Americans With Disabilities Act has covered the use of alternative power-driven mobility devices, so long as they are used responsibly and do not interfere with essential safety requirements. Many individuals with limited stamina or who cannot sit for long periods of time now use Segways and similar devices instead of a wheelchair or scooter. Lewis’ film explores how using an electric longboard affects not just his mobility, but how people perceive him.

Watch the full documentary below.

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Nordstrom's Anniversary Sale Catalog Features Model With a Limb Difference Shaholly Ayers

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Representation, whether it’s in the media or in advertising, is important. Adding to its existing displays of inclusive advertising, Nordstrom featured models with disabilities for its recent Anniversary Sale Catalog.

Nordstrom has included models with disabilities in its catalogs since 1997. “We’ve had a long history of incorporating diverse models into our catalogs, including those with disabilities,” Nordstrom vice president and chief marketing officer Scott Meden said in a statement. “We do our best to reflect the diverse communities we serve.”

nordstrom ad featuring model with disability

Nordstrom’s latest catalog features Shaholly Ayers, a model with a limb difference, who is shown in the ad wearing her prosthesis. Ayers has also been included in previous Nordstrom catalogs, alongside other models with disabilities.

Ayers told People, “I like that I’m wearing the prosthesis because you can tell they are being inclusive. It’s a little more obvious.”

When she first started ten years ago,  Ayers said, modeling agencies rejected her due to her disability. Independently, however, she built up a strong portfolio and reputation through networking and determination.

Now, Ayers is a brand ambassador for Global Disability Inclusion and has walked the runways of New York Fashion Week and Milan Fashion Week.

nordstrom ad featuring model with disability

Ayers said she hopes more companies embrace inclusive advertising, and she’s not the only one. Twitter users have also shared their appreciation, thanking Nordstrom for using inclusive advertising.

“It’s about showing, visually, that a person with a disability, a person who is an amputee, is still capable,” Ayers said in a statement. “I still should be considered beautiful despite my missing limb. That shouldn’t be a reason why I can’t model.”

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When Our Disability Attitudes Fail Us as Parents

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As parents of kids with disabilities, we want our children to be treated with dignity and respect. But what if we as parents don’t model that? I’m going to say something that I suspect will make a lot of people uncomfortable: sometimes we are the ones who treat our children in undignified ways. When I first realized I was guilty of this, it broke me.

Looking back at my own blog entries from years past, I can’t help but notice the language I used and the over-sharing of personal details about my children. It turns out that even as a parent, I need to look at my own disability attitudes. If I don’t give my children dignity and respect, how can I expect others to do that too? If I am to be a role model, what am I communicating about my children? I need to be ever mindful of how my unconscious biases and attitudes impact my children and their community.

In the last few years I’ve been learning about disability attitudes. Because I’m a parent of kids with disabilities, and because I’m aware of other people’s negative attitudes towards disability, I somehow thought I had no problems with my personal disability attitudes. Things changed for me when I got to know adults with disabilities and I began listening to what they had to say. I was not an expert on disability because of my kids, they were the experts because they were the ones who were disabled. A lesson that, quite honestly, was humbling for me.

I’ve confused my girls’ story with my story. I’ve felt entitled to share information about them because of how it made me feel. I’ve disclosed some details that, if shared about me, would make me embarrassed and hurt. I did it all in the name of reaching other parents in similar situations and offering hope and encouragement. It turns out I can still do that without compromising my children’s dignity and respect as human beings.

I parent a child with an intellectual disability, and it is easy for me to fall into the harmful and misinformed mindset that, “She doesn’t understand.” I must always assume she does understand, even if she’s not able to demonstrate it. Because I am operating under this assumption, my words and actions must guard her dignity accordingly. I do understand. And because I do, I have a responsibility to be the one who upholds her basic human dignity before others.

What will I communicate to someone who does not live my life? What mental picture am I planting in their minds when they interact with my child or someone with a similar disability?

My child gains nothing from my over-sharing; instead, she loses. She loses someone looking at her as an equal, she loses her dignity, she loses respect in a world that already struggles to see her as valuable and human.

I understand that if I were to publicly share about bathroom struggles, period issues, meltdowns or bad moments, I would be stripping my daughter of the dignity and respect she deserves. Those things are not for me to share. If they would be humiliating for me or for a typical peer, then because I value her and think of her as someone who deserves dignity and respect, those things need to stay private. If I have a question about those issues, if I need support from other parents, there are private forums or groups to do so.

I didn’t always understand this.

I still get confused and share their stories as if they were mine because of how I feel. But, it is not about me, or other parents, it is about my children. Do I share with their dignity and respect in mind?

I still make mistakes and share more than I need to. I probably still will, but I am learning.

If I want my kids to be treated with dignity and respect, I have to start by being an example. An example in the way I write, in the way I speak, in the way I advocate.

I want my writing to reflect how precious my children are, how much I love them, how much they enrich my life.

I want the hope and encouragement to come from a place of dignity and respect for my kids while I acknowledge our struggles as parents. It is possible, and I believe that type of sharing is more powerful than giving personal details about meltdowns or a list of diagnoses.

I want, above all, to know that when my kids read my words or hear me speak, they’ll know they are safe, because I respect them and treasure their feelings and their dignity.

Always presume competence. As parents, we would do well to take that to heart.

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Thinkstock photo by SJenner13.

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Why I'm Grateful for My Children's Hospital Experience as a Young Adult With a Disability

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I never thought I’d say that I’d come to love a hospital. I never thought I’d say I would want to go back to this hospital. I never thought I’d say I’m glad to have the experience of going to this hospital.

Great Ormond Street Hospital for Children (GOSH) is a world renowned hospital who care for sick children and help families cope with the stressful time of seeing their child ill. While I was able to see the amazing work the staff did while I was a patient, after being discharged and transferred to adult services I was able to see just how special this was.

Yes, I complained a lot. Yes, I spent a lot of time in tears. Yes, I swore to my mum I was never going back after each appointment. But my life was saved here. However much I shouted and cried at the staff, there were also times where we laughed, joked around, went on adventures round the hospital and set pranks on other staff members. Most importantly, no one gave up on me. Each treatment, each test, each procedure. All to help me get better.

I was referred to GOSH after a knee injury that never healed. I was sent to the pain management clinic where I was taught to manage my pain through medicines, pacing and physiotherapy. I attended groups and had psychological intervention; but my medical team remained clueless about the underlying cause of my pain. Following this, I was referred to rheumatology where my consultant was intrigued by my case. “A medical mystery.” I was immediately admitted to a ward for a series of investigations to find the cause. Yet after a week of tests, there was still no diagnosis. I’ve had every test in the book and three operations, yet there was no way my team could find to cure the pain I was in.

To this day, my pain is debilitating. I wake up in the morning unable to move. I limp down the stairs, feeling so sick I don’t want to eat. I force myself to try to do the activities my friends do, only to end up in pain and in tears at the end of the day. I’ve learned to accept my pain and manage it through the technique of pacing, but all I really want is for the pain to go away. It swallows my body, taking each part of it. It hurts to breathe. Sometimes I wonder if my body is just going to give up on me.

Even though the medical investigations that I had done came back with normal results, my team at GOSH never gave up. They always kept trying. Many people from outside the hospital told me I was making up the pain; I questioned why anyone would want this pain. I wouldn’t wish this on anybody.

The day I got a name for my condition was the best / worst day of my life. I had finally, after five years of darkness, been told the cause. My nervous system wasn’t able to regulate controls in my body like heart rate, blood pressure, fatigue and sensory simulation. It all made sense. The mystery was solved. But my mystery was incurable. Something which was never going to go away. I was going to be in pain for the whole of my life. And then I read it shortened my life expectancy.

The whole environment of GOSH made me love it. The reassuring staff who told me I was better than my pain, and to never let it stop me and also not to believe what I read up online. The doctors who research and investigate different treatments to try on me. The nurses who sat with me when I felt so lonely and scared; the ones who would help with my homework and do arts and crafts and do the can-can round the ward screaming at the tops of our voices. The crash team who rushed to help me when I collapsed in the corridor. The other patients I spent hours with playing Monopoly and Mario Cart. Sleepovers in each other’s rooms. The paintings of animals on the walls. GOSH doesn’t really feel like a hospital anymore to me. It is a safe place where I feel welcomed by warm and smiling faces.

No one wants to have to go to hospital, whether it is for themselves or to visit a loved one. But I want to go back to GOSH. Now that I’m 18 I had to be referred to adult services, however, I want to help. I want to give back something to a place that has improved my quality of life significantly. Therefore, I have joined the young people’s forum to help teenagers who are in a similar situation to what I experienced. I want people to know that not all hospitals have to be horrible places. GOSH is a loving, caring, safe environment. Every hospital should have this feeling.

People often ask me what my life would be like if I didn’t have the pain and health issues. Yeah, I might be able to run around, go out more with my friends, not have to worry that I’m overdoing it, not have to take medicine, get the chance to think about things that other teenagers think of, not have to admit I have a disability to university. But truthfully, I think it’s made me a different, better person. I have become more compassionate and able to understand others experiences. I have taken up new sports I previously wouldn’t have tried. I’ve made new friends at hospital. I was still able to sit my exams in hospital and go out with my friends. I have been through a lot, but I’m resilient and able to cope with many more situations than before. I’ve got battle scars and each one is kind of like a memory. I’m prepared for the future and I owe that to GOSH.

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Thinkstock photo by 1st Gallery.

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Disabled parking sign.

To the Man Who Judged Me for Using a Disabled Parking Space

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I have a registered disabled parking permit, and I use it often. More often than I would prefer to, actually. As a young person with an invisible disability, it is very difficult for others to fathom that I do require an accessible parking spot and am not merely abusing my parent’s or grandparent’s permit. I am often victim to disapproving and judgmental stares as I step out of my car and a physical disability is not visible. I am met with the same reaction even on days I am limping or walking slowly. But it was not until today that I was actually verbally abused for rightfully using a disabled parking space. 

I entered the bank shortly after parking my car in my designated spot. Upon entering the bank, this middle-aged man kept staring at me and mumbling to himself while shaking his head. I was unaware of the fact that he was mumbling at me, and went on with my errand. Eventually, he turned around to me and mumbled a little more loudly this time, “It’s none of my business… but handicap parking? Are you serious?” He didn’t address me, or indicate that he was intending to start a conversation. He just started yelling things into thin air.

My reaction was that of confusion, disgust, and just more confusion. Feeling a little thrown off, I replied with, “Yes, why? What?”

He continued to shake his head and repeated his sentiments, but this time adding, “That’s immoral. You’re immoral. Are you serious?” He was visibly so appalled when I confirmed I parked in a disabled spot, and kept rambling louder as he walked towards me,  until he eventually walked out the door as other people began to walk into the bank.

I was horrified that he believed it was OK to judge and verbally abuse someone before he got his facts right. I understand if, as a good Samaritan, you are against individuals abusing the disabled parking space by using a permit that is not their own. I also understand if you feel the need to go up to someone and ask them if they are a registered permit holder, or contact security or the police to enforce the law. I empathize with the fact that you may have pent up frustration from a past event where someone close to you desperately needed to use a disabled parking space and someone was misusing it. I get it. Trust me, I get it. What I don’t understand is how can you judge someone and yell at them for something you know nothing about?

It is immoral of you to automatically assume I am abusing power because of the way I look. It is immoral of you to start berating me without obtaining any information beforehand. In fact, I am not obligated to prove to you that I require a disabled parking spot. My disability is personal and I don’t need to prove it to you, but since I do understand the sentiment behind the request, I will oblige out of the goodness of my heart. It is immoral of you to believe I live a privileged life because of the way I look, or the car I drive (my parent’s car). I do not owe you an explanation as to why I used the parking permit, but I hope this helps shape your view for the next time you feel the need to yell at someone else or redirect your personal frustrations.

Today was a day I really needed that parking spot. I woke up with a piercing headache and bloodshot eyes after three hours of sleep. I had already visited three medical clinics by 1 p.m., and was on my way to the pharmacy to pick up medications to get me through the rest of the day, week and month. I spent a good five minutes sitting in the car after parking to make sure I could gather enough energy and mental strength to walk to the bank and carry on a conversation with a representative. I did not need to be met with a random stranger yelling at me. Do you know what that does? It causes me to expend extra physical, mental and emotional energy to assess the situation, to understand why it is happening, and to analyze whether this is a fight worth fighting. You just cost me my energy for the rest of the week. 

So to the man who judged my parking space, I hope you read this and learn that your behavior was not OK. It was hypocritical and judgmental. In fact, it was immoral. To those of you who do abuse someone else’s disabled parking permit, please stop. Your actions have consequences. To those of you who tell me this is the way of the world, and people will judge you — that is not OK. That is enabling their behavior. Please raise awareness regarding the prevalence of discrimination against those with invisible disabilities, so we no longer have to accept that that is just the way the world works.

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Thinkstock photo by 1st Gallery.

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