Every day we get emails from our parent readers looking for guidance for how to improve. Here’s what we take from that: Mighty parents want to do everything they can to ensure their kids with special needs have the best lives. Since the new year is a great time to think about what goals you have, we asked our special needs parents what their resolutions are for 2016.

Here’s what they had to say:

1. “Every new year, I do the same as before: take cues from my daughter to see where she is ready to take yet another step into independence.”

"Every new year, I do the same as before: take cues from my daughter to see where she is ready to take yet another step into independence."

2. “To be an even better advocate to her, so I can ensure she gets all of the therapies and accommodations she needs.”

3. “To continue to cultivate the relationships and friendships my child is making.”

4. “To be more mindful of how the present will impact the future.”

5. “To focus on me a little more. If I put more in my gas tank, then I have more to give every day!”

"To focus on me a little more. If I put more in my gas tank, then I have more to give every day!"

6. “To wage a battle with both of my kids’ schools to deal with issues I didn’t have the strength to last year.”

7. “To be more patient.”

8. To take some time to just breathe. To let them just be kids and let me just be their mom.”

9. “To enjoy time I get to myself without guilt.”

10. “To continue to encourage my amazing daughter to try new things and challenge herself, and then support her choices.”

"To continue to encourage my amazing daughter to try new things and challenge herself, and then support her choices."

11. “To focus more on the cans than the cant’s.”

12. “To Google less what ifs and alternatives. To feel confident that we’re moving forward in the best possible, most educated way.”

13. “To be more understanding.”

14. “To do my very best to give and teach my son what he needs, and if I can’t do it then I will learn/research until I can!”

15. “To focus more on the progress and less on the potential backslides.”

"To focus more on the progress and less on the potential backslides."

16. “To be more present in the family photo album.”

17. “To keep everything as simple as possible. Small and simple daily goals, simple daily plans.”

18. “To not let the ‘Mom Guilt’ get the better of me so much. I need to accept that sometimes it’s out of my control and life happens. I’m not perfect and that’s OK.

19. “To involve my child in choices about him.”

"To involve my child in choices about him."

20. “To appreciate more and be grateful for all my family has.”

21. “I don’t do New Years resolutions. I resolve every day (sometimes every hour) to get up, put one foot in front of the other and live life to the fullest.”

22. “To trust that I am enough.”

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What is your resolution for 2016? Let us know in the comments below.


This was originally posted on the Joseph Middlemiss “All You Need is Love” Mission Facebook page on December 26, 2013.

Oh Joe. It’s Christmas night and the season we dreaded has almost come to an end. What’s usually the happiest time of the year for us has been so difficult. All the memories of your joyful Christmas days, all of our dreams for Christmas mornings with you and your brother, all the “would have beens.” You loved Christmastime so much. Our hearts are so heavy with longing.

After we lost you, Dad and I decided it would be far too difficult to celebrate the holidays this year. Without you by our side, we couldn’t imagine finding joy in anything. After thinking about what to do to carry on your legacy, dad came up with the great idea of the “All You Need Is Love Mission.” We did not mean to kick it off right at the start of the Christmas season, but that’s how it played out. As I sit back now, I realize it was probably your plan all along. So much of your legacy is tied to that of the Christmas story. I guess it’s not surprising that carrying out your missions helped to rekindle the true meaning of Christmas in our hearts. You’ve always been our Christmas miracle.

Following in your footsteps and giving in your name have been the only things that have brought us any semblance of joy this season. We truly hadn’t planned on experiencing any of this joy, but you kept nudging us along. I cannot even articulate the magnitude of your presence. I’ve even tried to overlook it, chalking all these powerful experiences up to being strange coincidences in our physical world. When I sit back, reflect upon my feelings and really allow myself to see the big picture, it is so very clear. You have been right by our side during this most difficult season, slowly opening our hearts and allowing glimmers of goodness and hope and love to shine through. So many have applauded the work we’ve done in your name, commented on our strength and conviction. What they don’t understand is the fact that we are not doing anything. It is all you.

Dad and I have tried to open ourselves to your spirit and let you guide us in completing your work. This has brought us an amazing sense of peace and has spread to so many others. Spread like wildfire! Friends and strangers who have helped us by carrying out good deeds in your name have shared similar feelings with us. Powerful feelings of your presence, guidance and approval as missions were being done in your name. So many lives touched. Another Christmas miracle.

As much as I don’t want it to be, I must admit, this has been quite a Christmas journey you’ve led us on. Giving to others, spreading love through action, reaching out to help others in need. Sure, Dad came up with the idea, but you have led us every step of the way. You’ve been hanging out at tree farms, sending us nativity scene signs, inspiring an entire school community of students, teachers and parents to spread holiday cheer to other children. You even had Dad and I singing “Dominic the Donkey” and other carols with roomfuls of children. The words were coming out of my mouth and I was tapping out the beat of the songs before I even realized it. Your spirit was surely at work.

Oh Joe, Dad and I have been on this roller coaster of emotion. We’ve experienced these highs after feeling your presence during our missions. These have been followed by so many low times, almost like sucker punches to the gut, reminding us you are physically gone, that it’s not all a bad dream. On Christmas Eve, I felt the lowest I have since the day you earned your angel wings. I just didn’t get it. You had been ever so carefully and gently guiding me through this journey of grief, slowly opening my heart, showing me the way, until that night. You left me alone… or so I thought…

As much as we love the family, Dad and I decided it was too difficult to be around everyone this year without you. You’ve made your desire for us to celebrate Christmas abundantly clear through all your Christmas-related signs, but we just couldn’t do it. We just wanted to get away and spend Christmas somewhere new, somewhere away from all of our memories with you. We were planning to book a place on the Cape, but then a friend provided us with the perfect opportunity for our grand escape. She offered us her family’s vacation home on a beautiful resort in the Poconos, and we gratefully accepted. I was initially so excited to get away and try to get through the holiday in this beautiful place. As we embarked on this 4.5-hour journey, however, the tears began to fall. Still we drove on, hoping to find peace in our grand destination. My tears fell faster and faster as each mile passed. My longing for you grew and grew. Finally we reached our destination, but I didn’t feel as I was expecting. The house was gorgeous. The location breathtaking. Everything was perfect. Then the panic set in. I felt more alone and scared and grief-filled than I have since we lost you. So main. The oceans of tears opened.

Dad knew our only option was to jump back in the car and follow that same 4.5-hour path back. I can’t explain how terrible I felt, how embarrassed I was for letting my emotions take over, or how much I long to be with you. As dad drove, my heavy heart began feeling some relief. At one point we both realized we hadn’t eaten for hours. The problem: we were in the middle of nowhere and it was getting late on Christmas Eve. What would be open? IHOP? Closed. Arby’s? Empty. Stewart Airport Diner? Open. Warm. Welcoming. This is where we would have dinner on Christmas Eve.

As we approached the door, my tears had stopped and Dad and I looked at each other and just laughed and laughed. We were exhausted, emotionally drained and had your infant brother in tow. We’d never taken him to a restaurant with us before. Here we were in the middle of nowhere, on Christmas Eve, and we were taking Jack into his first dining experience at none other than a truck stop diner. We laughed some more.

As we sat and ordered our meals, the laughter continued. That beautiful home in the Poconos should have been the place to spark this peace, this laughter, but it wasn’t. Instead, we found our peace in that little diner. In the middle of nowhere. The waitress came over and talked to us like everything was great and normal. She didn’t comment on our disheveled appearance or tear-stained faces. She didn’t seem to notice our broken hearts. She just engaged us in conversation, cooed at baby Jack and smiled. We spent about an hour in that diner in the middle of nowhere,on Christmas Eve with your baby brother in tow. We chatted. We laughed.

As if you were right there, guiding my hand, I reached into my purse and pulled out your mission card. I knew right then what to do. This waitress was going to get a big tip. It wasn’t about money. Your mission has always been so much more than that.

We didn’t sneak away this time and leave your card in secret. We handed the kind-hearted waitress your mission card with the her tip. She looked at us in surprise so we told her it was a gift from you. We sat for another 15 minutes or so and told her all the details of your story. As I bounced Jack in my arms, Dad and I recounted your legacy to this wonderful woman. She shared stories about the three young children she had at home. Three beautiful girls who were missing their mama on Christmas Eve. Our tip would make Christmas a little merrier for those three beautiful girls. It was the least we could do because their mama gave us the comfort, the laughter, the smile we needed so very much.

Dad and I walked out of that diner and laughed. Before the door was even able to shut behind us, I felt your presence. I could almost envision you giving me a high five. I looked back through the frost-covered window of the restaurant, and time seemed to stop. The waitress was at the bar with a group of people around her. She was showing them your mission card and smiling. She was passing on your legacy. I guess our long drive to that beautiful house in the Poconos wasn’t a wasted trip after all. We were right where we were meant to be… in a diner… in the middle of nowhere… on Christmas Eve.

As dad drove back home, I shared this story with the friend who had so generously lent us her beautiful vacation home. I felt terrible that we were not able to find peace there. I wanted her to know this silver lining of the story. I woke up this morning to the following text from her: “I shared your message with the kids this morning before we opened gifts from Santa. What a special Christmas story and message. If Jesus was born in a barn then why not spend Christmas Eve in a humble truck stop spreading love?”

So much for avoiding Christmas this year! Thank you for guiding me, Joe, and helping me find your message in the most unlikely of all places. Merry Christmas, my love. My heart and my soul forever. We promise to spread your Christmas message throughout the entire year. It doesn’t end here.

As my son turns 3 years old and transitions out of early intervention services and into the school system, a few thoughts come to mind. “Thank you” is not enough as we prepare to say goodbye. You have been there from tube feedings to spoon feedings, from barely rolling to walking, and from sign language to spoken “I love yous.” Pediatric therapists are a gift you never knew you needed but are so grateful to have worked with.

Thank you for pushing my son to be the best he could be.

Thank you for not giving up through the screaming, hitting and biting.

Thank you for never accepting his self-limitations as the final goal and always looking for another way to teach him a concept.

Thank you for coming to my house and not judging me if it wasn’t spotless or tidy.

Thank you for giving me a few minute reprieve when I needed it.

Thank you for teaching me how to use everyday items in my house as an obstacle course.

Thank you for giving me strategies to get my son to eat.

Thank you for helping me handle sensory issues.

Thank you for listening to my fears and concerns about transitioning to school.

Thank you for being someone my son can trust and love.

Thank you for being a friend.

Words cannot describe how grateful I am to have encountered you. You have been there from some of our greatest inch-stones to our largest milestones and shared the same excitement and pride as if he were your own. Thank you for having more ideas, strategies, patience and passion than most people I have ever met.

The Mighty is asking its readers the following: Write a thank you letter to someone you realize you don’t thank enough. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.

I’m not a big fan of traditional New Year’s resolutions, especially since it can take so much practice (and failure) to learn how to balance personal desire with the limitations of illness and disability. I do find, however, that December and January, in the darkness and quiet of winter, is an excellent time for reflection and clarifying intentions. From this vantage point, 2016 is going to be an interesting year!

1. Harmonizing creativity and patience.

Creativity isn’t naturally patient, at least not for me. It has a fiery momentum and a desire to move towards itself in the outer world. Creativity spills over with enthusiasm and doesn’t care much about limitation. Recently I have been blessed to experience a greater level of creativity but also challenged with how to express it in a healthy way.

To be authentic and honor my health, it’s important I recognize that creativity isn’t an indulgence, an escape or something that surpasses limitation. It’s a part of me and, like all parts of me, is confined and shaped by the illness I live with.

And so I have introduced creativity to patience. Their first meeting didn’t go especially well. Throughout 2016, I intend to invite these two practices to spend as much time playing together as possible. They may not like each other much now, but I think they can learn to live in harmony.

2. Exploring my sexuality.

I have lived with chronic illness all my life. As a result, my sense of myself as a sexual being has been heavily influenced by it. Unfortunately, that influence has been negative. As I embrace my mid-40s, it occurs to me that I’ve never allowed myself the gift of developing my sexual health. I think it’s time.

So I have been wondering lately. What is my sexual identity as a disabled woman? How can I connect more fully with my sensual nature without inviting experiences that are too intense for my hyper-sensitive physiology? Can my body “wake up” in this way and can it nurture my overall health?

Considering all of my limitations, celibacy is still the healthiest and most practical path, and the challenges to exploring questions like these are not inconsequential. 2016, however, will be my year for experimenting, as I am able, with techniques like tantric meditation, yoni yoga and creative visualization.

3. Befriending the wild nature of illness.

Over the years, I have enacted resolutions to deepen self-love and grow in a healthy, resilient relationship with my body. In general, I have experienced great success. Lately a new calling has been emerging. With my lifestyle being decidedly healthy and my degree of functioning stabilized at a very low level, I’ve opened my heart and mind to a new way of relating.

There is nothing unnatural about illness or its limitations. It is life, being itself. It is an opportunity to remember my place in the natural world, where I am not the general manager of the universe. I am a part of a living, breathing, inter-connected ecosystem. Just as human activity has a great impact on the climate of the Earth, I also have the capacity to influence the climate of my health. But the weather is not mine to control. There is something beguilingly, and sometimes frighteningly, wild about illness.

In 2016, I intend to build a stronger relationship with this wildness — and see where it takes me.

Follow this journey on Small Acts of Devotion.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability and/or disease, and what would you say to teach them? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.

Lead photo source: Thinkstock Images

Along with a number of people in the disability community, I was unimpressed by Kylie Jenner’s photoshoot for Interview magazine.

Following widespread criticism, Interview explained to E! the imagery was intended to depict Kylie in a number of situations with varying levels of power, to prompt us to think about “Kylie’s status as both engineer of her image and object of attention.”

So Interview used the wheelchair as a prop to explain to us that sometimes Kylie is empowered and sometimes she’s disempowered. This use of disability as a prop did not go down well with people with disabilities. Or the mainstream media.

The mainstream media was outraged, apparently on behalf of people with disabilities everywhere. But they still thought disability was inherently bad.

Almost every article I read on the topic used ableist language to criticize Jenner’s ableism. Like Kylie, they used disability as a prop.

CNN described the photo as “tone-deaf” while my local rag, the West Australian, suggested it was a “limp effort from model.” Then The Huffington Post hypothesized the wheelchair symbolized that Kylie was “‘crippled’ by fame.” BuzzFeed thought the imagery was communicating Kylie’s belief that she is “limited” by fame.

The news media, which claims to be an authentic retelling of events and issues in society, reinforces preexisting public knowledge and accepted cultural values. When it comes to people with disabilities or stories about disability, the news tends to conflate disability with worthlessness.

In an article for Disability and Representation, Rachel Cohen-Rottenberg explained that metaphors and synonyms for disability are used as a cutting insult. In a 2006 article about disability in the news for the journal Disability & Society, Tanya Titchkosky observed the way disability is “connected to limits, such as death, and represented as if such limits are not necessarily also possibilities, life.”

Disability media scholar Beth Haller told me these disabling linguistic metaphors are frequently found in a number of communication contexts. While they offer a shorthand for criticisms, they stigmatize people with disability.

When the media uses ableist language to criticize, it reinforces the cultural belief that there is something inherently wrong with having a disability — that only limitations are associated with disability.

These pejorative metaphors reinforce the cultural devaluing of people with disabilities who continue to be excluded from participation in communities and public life. Cultural stigma impacts people with disabilities who are denied essential social services and are less likely to be in paid employment. People with disabilities are also treated as powerless, childlike, asexual and incapable of participating in decisions that affect their lives.

In 2013 I surveyed 341 Australians with disabilities about the ways the media was representing disability. With specific reference to the news, 80 percent of respondents felt that news portrayals were not doing a good job of helping the general public understand the social issues faced by people with disabilities. In general, the news was seen as offering inaccurate portrayals and not providing objective information or covering disability issues fairly and fully. The respondents saw the media as failing to reflect how people with disabilities are in real life.

According to Women with Disability Australia, media-perpetuated stigma has a detrimental effect on the lived reality of women with disabilities, who are thought to embody the powerlessness the Interview wheelchair imagery sought to invoke.

Chris Wallace, who interviewed Jenner, wonders in the article if “discussions about Kylie not only happen, but kind of, like … matter?”

These discussions do matter, disability activist Karin Hitselberger wrote on her blog Claiming Crip.

“So often the lives of actually disabled people are seen as a terrible fate,” she said. 

And using ableist language to criticize or insult continues the cultural stigma of the “terrible fate” of disability.

In the interview, Kylie talked about her public persona and the disconnect she feels between her image and her real self. A number of people with disabilities say they feel a disconnect, too — a disconnect between who they are and who the media believes them to be. Ableist language isn’t helping.

When some justify the use of ableist language because some bodies are just “better” than others, this shows how deeply entrenched the stigmas is. Why are some bodies better? And why are some people excluded? People with disabilities say their lives aren’t just connected to limits — they have real possibilities, too.

While it is great to see the media paying attention to disability issues and criticizing the use of disability as a prop by Interview magazine, the ableist language used to make this critique perpetuated the same stigma. Disability should not have been used as a prop in Kylie’s photo shoots, and it is not necessary to use disability as a prop to make this criticism.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability and/or disease, and what would you say to teach them? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.

Lead photo source: Interview Magazine / Steve Klein

Hi, Em. It’s me again. I wanted to ask you some questions. I don’t know when you’ll read this again, but I hope that you’re older and infinitely wiser.

It was only a little more than a month ago that I found out about this clot thing. I would exchange some choice words about the hell-devil that has made a home in my chest, but you already know how much I hate it. It has been less than two weeks since the surgery to remove my rib and free up my vein, and I’ve already had to stick myself in the stomach 20-something times. It’s become so normal that I find myself answering the door with a syringe in my hand. Do you find that funny now? I’m so ready to do my last shot of anticoagulants. With my bleeding risk this high, Mom seems scared to even let me ride in a car. I want to go ice skating and drive down back roads at night with my friends without worrying about what would happen during a fall or minor crash.

You probably have some wicked scars now. Do they look good? Did you get tattoos of flowers and life and beautiful things around an area so filled with fight, or did you opt to keep your battle wounds as they are? Are the hard years over?

Em, I’ve been feeling separate from the world again. That odd kind of other-ness that comes from spending five hours watching true crime documentaries and watching life pass me by from my window. Do you still get that? My life feels more like one of those “follow the life of a sick person” TV shows. You know, the ones where the sick protagonist is put in a life-or-death situation and learns so much about life and family. I’ve learned a lot about many things, but instead of parading around with my new outlook on life, I’ve been attempting to buy everyone incredible Christmas gifts because if we didn’t do repeat ultrasounds I could have died this year, and I feel really freakin’ bad about it.

I’m still hopeful, and I hope you are, too. Even if you get pulled back to the hospital and have to watch life from your window a million times over, watching life from your window is a heck of a lot better than not having a life at all.

I don’t know what year it is or what your life looks like, but go outside and taste the snowy air. Pull those you love close. If you’re old enough, have a glass of Champagne with friends. Celebrate. Celebrate the fact that against what seems like all odds, you’re here. I don’t know what tomorrow holds. I really wish I did, but I hope it’s good. I hope you’re well. And I hope that no matter what happens, you’re surrounded by people who love you and bring you joy in the darkest times.

There’s a Jack’s Mannequin lyric that really stuck with me. The one that revolves around the premise of “somedays” and says we’ll “laugh about a year that felt a little more like war.”

I hope you’re laughing.

With love and hope,

Your 16-year-old self  emily collage

The Mighty is asking its readers the following: If you could go back to the day you (or a loved one) got a diagnosis, what would you tell yourself? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.

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