Why I Share the Vulnerabilities I Feel as a Special Needs Parent


Every once in awhile you find someone on the Internet and read what they write and see what they share and think, “This mom is like super cool.” So you become “friends” on all of the social media networks, and you chat occasionally and like each other’s Instagram posts and comment on their blog posts — but not all of them because that can seem creepy.

Then, if you’re lucky, one day you meet. Over plates of Middle Eastern food, you share your stories of just how unpredictable life can be. How this reality you never imagined for yourselves is hard and demanding and relentless, but also at times wonderful and surprisingly amazing. And if you’re really lucky, your Internet friend turned real-life friend is every bit as authentic and lovely and rad as you thought she would be (and not at all “weirded out” by the fact that you wrote this post). I guess what I’m trying to say is some of the most wonderful connections we make can spring out of the challenges that seem the most unimaginably tough.

Sometimes it’s hard to own the albatrosses that come with parenting or special needs or just being human. But as Brené Brown says, “Embracing our vulnerabilities is risky but not nearly as dangerous as giving up on love and belonging and joy — the experiences that make us the most vulnerable. Only when we are brave enough to explore the darkness will we discover the infinite power of our light.”

little girl looking out window
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Sarah’s daughter.

Last summer I created a podcast about parenting kids with special needs. By far the most rewarding part of that experience has been building deep connections and sincere bonds with strangers-turned-friends as we share the vulnerabilities that come with parenting in some of the most unpredictable of circumstances. Because we’ve been willing to be real and share the challenges and struggles together, we’ve created a space where love and belonging and joy can prevail. I really hope to meet and share stories — and plates of ethnic food — with more online friends soon. Because seriously, so many of them are like super cool.

The Mighty is asking its readers the following: Describe the moment a stranger — or someone you don’t know very well — showed you or a loved one incredible love. 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 Submit a Story page for more about our submission guidelines.

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33 Texts Special Needs Parents Would Love to Get From Their Best Friends


Few things bring a smile to your face faster than a sweet text message from someone you cherish. We asked the parents of children with special needs in our Mighty community to share with us the texts they’d love to receive from their best friends. We received hundreds of responses — a testament to the power of simply reaching out.

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Here are just some of the texts. Best friends, take note.

1.

Text message that says [I'm bringing dinner over. While you and your family eat, I will do some laundry for you and load your dishwasher. No, you can't help me. Just sit and enjoy your family for a little while, and let me take care of you.]
Submitted by Jason Heather Tanner

2. 

Text message that says [Got time for a coffee/visit?]
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Submitted by Melissa Mckeown

3.

Text message that says [You're doing an amazing job! Keep it up! Let me know what you need. I'm always here for anything you or your girls need.]
Submitted by Renee Kunzeman Stucker

4.

Text message that says [Whatever this week throws at you, know that I love both you and your son, and I'm always here for you both.]
Submitted by — Mandy Reilly

5.

Text message that says [I know you're tired and overwhelmed. But you're doing amazing. Between doctor appointments, three different therapies, school for both your kids, single mom duties and life, you're doing a great job. I'm stopping by with hot coffee and a new coloring book to keep the kids occupied so you can drink it hot. Also, there may be chocolate for you to hide from your toddler to eat after they go to bed!]
Submitted by Chelsea Hernandez

6.

Text message that says [Let's get the kids together for a playdate.]
Submitted by Amanda Scott

7. 

Text message that says [You're strong, you've got this and I'm right behind you if you need anything at all.]
Submitted by Laura Hollingsworth

8.

Text message that says [I'm here for you if you ever need to listen.]
Submitted by Wendy Smith

9.

Text message that says [Will you teach me how to tube-feed your son so you can go out with your husband now and then while I care for him?]
Submitted by Sarah Whiting

10.

Text message that says [You're great parents, and your daughter is amazing. You shouldn't have any guilt because you're doing a fantastic job advocating for and working with her.]
Submitted by Nicole Meyer

11.

Text message that says [I'm coming over to sit with the kids while you go and get your nails done. My treat.]
Submitted by Sarah Smith Hull

12.

Text message that says [I've set us up a weekly coffee date. I'll bring freshly baked, allergy-friendly goodies, you provide drinks, and while we chat and eat, the cleaner I've hired for you will make your house sparkle.]
Submitted by Kathleen Simpkins

13.

Text message that says [You're the luckiest mom ever!]
Submitted by Kristine Marie Nute Kleinman

14.

Text message that says [Hey, while the kids are at school, let’s grab lunch!]
Submitted by Nikki McNutt Thiem

15.

Text message that says [Can I come watch the kids so you can nap for a few hours?]
Submitted by Lily Krueger-Decker

16.

Text message that says [I'm taking the kids on Friday…. see you on Sunday! Get some sleep and a shower.]
Submitted by Michele Gaston

17.

Text message that says [Hey, how have you been?]
Submitted by Sara Murdock

18.

Text message that says [I know it’s hard for you to get out of the house, so I'm coming to you so we can go for a walk.]
Submitted by SarahandLayne Coates

19.

Text message that says [I see you struggling to be everything to everyone. A great mom, a good wife, an OK friend. It's OK to just be you sometimes.]
Submitted by Toni Johnson Lundmark

20.

Text message that says [I miss you and I'm sorry for being distant. Can we have a Mommy's Night Out soon? Love you.]
Submitted by Tiffany Pihir

21.

Text message that says [I'm on my way over with dinner and wine — let's hang out.]
Submitted by Sarah Pinnell Coble

22.

Text message that says [Open the door, I'm outside, and the coffee is getting cold.]
Submitted by Rosy Jacowitz

23.

Text message that says [Plan a date night, I'll watch the kids!]
Submitted by Kellie Luke

24.

Text message that says [You're an amazing mom, friend and person.]
Submitted by Allison Naveda

25.

Text message that says [I may not know what you're going through, but I'm here, and I love you both.]
Submitted by Vickie Carpenter

26.

Text message that says [You're doing better than you think you are] with a red heart emoji
Submitted by Carly J Lazear

27.

Text message that says [I will always be here to listen without judgment or condition. Let me learn with you.]
Submitted by Debbie Arenson

28.

Text message that says [You're an awesome mom.]
Submitted by Heidi Marie Harrison

29.

Text message that says [I'll never give up on our friendship, even if you can't find time to talk or catch up.]
Submitted by Jacqui Neill

30.

Text message that says [I just want you to know I'm thinking about you.]
Submitted by Katie Herron

31.

Text message that says [I believe in you so much! I see the love you have for your child, and it warms my heart.]
Submitted by Wendy Campbell

32.

Text message that says [You are never alone.]
Submitted by Melanie Bertrand Koreman

33.

Text message that says [I see you.]

Submitted by Allyson Ramsey Noel

*Some answers have been edited for brevity and clarity.

What’s a text message you’d love to receive from your best friend? Share with us in the comments section below.

19 Things People With Chronic Illness Want Their Friends to Know


Loved ones may believe they understand what their friends with chronic illnesses are going through. But unless they’ve lived with an illness themselves, they may not fully appreciate the challenges their friends are facing, from debilitating physical symptoms to the unpredictability of their health or the pain of feeling left behind.

We asked our Mighty community with chronic illnesses to share what they wish their friends knew about their lives. By offering a glimpse into their realities, they hope their friends will begin to understand how to be supportive and compassionate when plans get cancelled or when someone’s having a tough day.

Here’s what they told us: 

1. “I wish my friends could know the real guilt I live with for having to cancel plans last minute. I couldn’t attend my best friend’s wedding because of my illness… We don’t have the luxury of getting a warning.” — Ashanthi De Silva

2. “I wish my friends knew there are no quick fixes, nor will I ‘get better soon.’ It takes a lot of effort to do things. Just because I can laugh doesn’t mean the pain, fatigue and nausea has disappeared. I just want to laugh.” — Kaisha Holloway

3. “It’s painful to know you are always looking through the glass at your life but can’t ever actually get in to participate. I don’t blame you for moving on — your life is busy, full and stressful. I never knew I could be jealous of that. I took that part of my life for granted.” — Jelea N Dan Ulberg

chronic illness friends 1

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4. “Don’t give up on me. I still care about you and I still want you in my life — even when I have to cancel. If the tables were turned, wouldn’t you ask and hope for the same?” — Shiloh Davison

5. “I scrimp and save up energy to go to events. Everyone says how well I look or that I don’t seem sick. What they don’t see is the next week where I can barely get out of bed because I am recuperating from said outing. I think we all try our best to be present and happy when we are out; it’s uplifting to be with friends. But we do pay a price that most don’t see or understand.” — Elizabeth Prungel Casperite

6. “I wish my friends knew how very hard it is to ask for help, and that sometimes I don’t ask for help when I should. Thank you to the friends who step in when I need them, whether I ask for it or not.” — Julie Pruitt

7. “I don’t always like being alone. Come over, bring a coffee and a snack… let’s watch a movie. I miss you!” — Melanie Johanson

chronic illness friends 2

8. “Having to cancel plans is not something I like to do. I’m not trying to come up with excuses or avoid you, I hope I’ll feel better up until I literally cannot make it in time… I’m jealous of my friends who don’t have to worry about over-taxing themselves because they’ll have a flare up. I’m jealous of their independence.” — Sam Vargas

9. “Don’t forget about my partner! If you see him, ask him how he’s doing. In the background he is doing an incredible job keeping our family and house running.” — Jo Walker

10. “How important it is to be able to talk and vent to them about my health, even if the things I say are way over their heads. They don’t have to say anything, just listen (and maybe give me a comforting hug after I’m done).” — Laura Vago

11. “Just because I try to stay positive doesn’t mean I am all better.” — Kerri Lewis Brock

chronic illness friends 3

12. “I wish my family and friends knew how hard it is to get through a single day, every day! And those are the good days. There are days that even my mouth and teeth hurt… I would trade one year of a life with no (or less) pain for 10 years of living with this pain.” — Letticia Rodriguez

13. “I wish my friends (and family and coworkers) would understand that it is entirely possible for me to be way more exhausted than they are, even though I have only worked three part-days, not five full ones!” — Kimberly Matthews

14. “I wish they knew how different my life is from theirs. Not only do I have all the normal stresses of life, but I have to add in things like medication schedules, doctors’ appointments, pain and missed plans.” — Alex Kendall

15. “I wish my friends knew how much I love and appreciate them. When they check on me, understand why I always flake on them, and pick me up when I’m down, I can never stop thanking them. But I wish they knew just how thankful I am to have them in my life.” — Taylor Schmitz

chronic illness friends 4

16. “I value our time together, but it is very draining on me. I can’t hang out with you as much as I’d like, but that doesn’t mean I don’t love you as much as ever. Sometimes interacting on social media is all I can physically handle, but it makes me still feel close to you, and I appreciate every text, every post on my wall, and every funny picture you tag me in. I take comfort that I’m not forgotten.” — Darcy Krieger

17. “I wish people would not compare illnesses. It makes us feel minimized. That is isolating.” — Terry Weber

18. “There’s so much that goes on behind the scenes you’ll never know about. Medications, mobility aids, periods of total inability to do anything, and when I’m at home ‘resting’ it’s because I literally can’t walk. It’s not a fun time and I wish I could be doing a thousand other things. I’m not just having fun and having a day off.” — Elly Hartley

19. “I want them to know I’m still me. Just a version dealing with pain and fatigue on a daily basis.” — Carla Buckmiller

chronic illness friends 5

If you have chronic illness, what do you wish your friends knew about your life? Let us know in the comments.

The Day I Stopped Trying to Help My Daughter With Special Needs Make Friends


As the parent of a child who is nonambulatory and nonverbal, I worry about how she’ll assimilate with other children as she grows. Will she be unconditionally accepted? Or might she be alienated? Will she have the opportunity to enjoy affection in a sincere friendship? In as much, I spend stressful moments in a state of angst, devising things I can do, or ways I can facilitate her integration with others. I try to do everything I can so I can enable just one single bond.

I’ve learned, however, that sometimes the best thing I can do as a parent is nothing at all. Settle down, stand back and allow the genuine innocence of other children to flourish in crafting a special friendship of its own.

Such is the lesson from a lively and delightful boy who celebrated his sixth birthday recently. I’ve learned he’s always keeping a tender eye on my daughter Linleigh at school. He visits her in her classroom, donning her with his artwork. He stands in the rain with her after the school day ends until he knows she’s picked up safely. And he worries about her when she doesn’t show up for school.

A short time ago he invited Linleigh to his birthday party. As we arrived, he welcomed her at the door with a huge smile and an eagerness to steal her away from me to push her around with his other friends. Just watching his candid exchanges with her, it was obvious he takes no pity on her and doesn’t feel sorry for her, but appreciates her for her.

young boy and girl looking out large window
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Linleigh and her friend at his birthday party.

At one point in time I lost sight of the two of them. I peeked around the facility and ultimately discovered just the two of them alone together in silence, sharing a view from the big windows. He had rested his leg on the wheel of her wheelchair and held an arm around her head, oblivious to the medical equipment between them. Though no words were spoken, I feel they shared so much with each other. And at that moment I was reminded not to ever underestimate the boundless love of a child’s very essence. I vividly began to understand that my daughter will have genuine buddies. She will enjoy authentic friendship. She will be loved.

The Mighty is asking its readers the following: Describe the moment a stranger — or someone you don’t know very well — showed you or a loved one incredible love. 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 Submit a Story page for more about our submission guidelines.

How Learning My Daughter Had Special Needs Changed Me Forever


I’m forever changed, and I’m not so sure that’s a bad thing.

Just the other day, I sat and listened to someone tell me that when they worked in a special education class it “wasn’t that bad.” That the kids were only pulled out for Language Arts and mainstreamed for the other classes. She went on to tell me that when she worked in the more “severe” classrooms where the children are “all like,” [mimics with her body what she must perceive someone with special needs to look and sound like] she “didn’t understand it.” I think I was just stunned by what was being said to me. Despite what I think my face must’ve looked like, she continued and stated she didn’t understand the reasoning behind those children with “severe” intellectual disabilities having teachers read books and sing songs to them. She didn’t see the point.

As my skin began to crawl and my blood boil, I wanted to say something terrible, like, “So what should we do with those children?” But I didn’t bait her anymore. I decided to educate her. I decided to tell her that some people with significant physical disabilities function cognitively at the same level as their peers and genuinely enjoy hearing songs, stories and learning from their teachers — and although they can’t always show it, learning is occurring. I also wanted to say, “And what if those children were believed to be incapable of understanding? How do we know for sure? What is the harm in enriching those children’s lives with music and literature?” I wanted to then divulge my own story, to tell her how I was told my own daughter was not capable of understanding, speaking or learning like “a normal child.” Needless to say, I didn’t. I wanted to, but I didn’t.

girl holding railing
Allison’s daughter, Ailbe.
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These types of interactions make me sad at first. Naturally, how could I not be? Some people still feel this way about children with special needs. Some people still don’t understand how far we’ve come in our beliefs of what children can do and what they are capable of. I often think to myself, would these people make such comments if they lived with a childhood disability themselves? If they had a child with disabilities? If they lived a “normal” life and then their mental capabilities changed? I don’t believe they would.

My feelings towards the negative views of special needs and the education of children living with these needs have changed drastically. Instead of becoming enraged with these people, I choose to educate them. I choose to share stories of children I know and my own. I choose to ground those people with comments like, “That must be so trying on their parents and families.” Not a burden in any way of course, but all of the extra challenges that occur daily for a special needs family can take a toll on all.

girl crawling on grass
Ailbe playing on grass.

You see, once you’ve sat in a room with a neurosurgeon who has told you your child isn’t aware she’s living and is incapable of development in her current state… that kind of horrific meeting can change a person, and change them forever. Was I always sensitive towards children and people with special needs? Actually, I believe I was. But my own experience and those of the families and friends I’ve grown to know in the special needs community have forever changed me. I see everything differently. That child at the store everyone is staring at. I smile at the mother and offer a nod of understanding. That child at the restaurant who randomly shouts or screams but looks “too old to be doing that.” I smile at the mother and give her a nod of understanding. That child who smacks my child at the park because she got too close to him or her? I smile at the mother, the one who is currently looking mortified and contemplating packing up and leaving the park altogether and give her a nod of understanding. Something may be going on. Yes, you sometimes have naughty little kiddos who act up, but there can often be unseen things going on that we can’t know. In those instances, I ask that you extend kindness to those people and try not to judge. Try to choose kindness. Choose hope. Don’t merely try to appease these people, but welcome them. Accept them as part of your community.

If we can get to a place where we do this, where we don’t label children, where our kids go to school together — in a classroom in which you have all children with varying intellectual and physical needs — then I think we will have progressed as a society. Stop telling parents to institutionalize their children. Stop flagging kids with special needs and segregating them. Support the schools and teachers with the resources and training they need.

Stop stigmatizing special needs. Just stop. Take a step back and see this. Those are children. They are all children who were birthed by mothers who love them and want nothing more than their lives to be as easy as possible.

Let us hope. Let us change.

girl at the beach
Ailbe at the beach.

Follow this journey on My Purple Pack.

The Mighty is asking the following: Describe a moment you were met with extreme negativity or adversity related to your disability and/or disease (or a loved one’s) and why you were proud of your response — or how you wish you could’ve responded. 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 Submit a Story page for more about our submission guidelines.

18 Secrets of People Who Are in a Relationship and Chronically Ill


A chronic illness diagnosis doesn’t only affect the person experiencing the illness — it can also change the life of the person he or she is in a relationship with, as well as the dynamics of the relationship itself. As two people navigate one partner’s chronic illness, their love, communication and commitment may be tested — for better or worse.

To someone who’s partner has just been diagnosed, or to a person just entering a relationship with a chronic illness patient, the uncharted waters may seem daunting. To learn more, we asked our Mighty readers with chronic illness to reveal the most rewarding, challenging and maybe even unspoken parts of being in a relationship while chronically ill. Their answers are honest and raw, but one truth remains: everyone deserves to be loved.

Here’s what they told us:

1. “Chronic illness will test the vow ‘in sickness and in health’ and can either make or break a relationship. To grow despite the burden of chronic illness takes nurturing each other even when the care seems lopsided.” — Danielle Myers

relationships 1

2. “Being in a relationship while suffering from chronic illnesses really shows how much that person cares. Even in friendships. With chronic illnesses, it is hard to plan ahead and follow through on plans, even if you really want to do it. You never know when you will have a bad day or when a good day will go bad. It takes a special person to truly understand and be OK with how unpredictable we may be.” — Erin Ann

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3. “It’s like you have all the stresses of a regular relationship — then multiply that by 100! Everything is intensified, magnified… And I need friends and family, because a spouse cannot be everything to you. You need to be able to vent and talk to others who understand, too.” — Christina Marroquin-Mauricio

4. “Sex life? What’s that? Chronic illness will shove intimacy to the back burner. It’s hard to want sex when you feel like a semi has not only hit you but dragged you behind it a few miles… on a regular basis.” — Selena Marie Wilson

relationships 2

5. “I wish people knew that when we make it out to an event or a gathering with friends, it requires planning together and pushing through fatigue and pain. If you see us out, our smiles are a little brighter because we’ve been able to communicate and understand each other. We hold each other’s hands a little tighter because we know how lucky we are to be together and experience another day.” — Ashanthi De Silva

6. “No matter how many times he tells me he loves me, I worry one day I won’t be adequate enough. I worry I will hurt or disappoint him. I worry I will get worse and even though he says he understands, I fear one day he won’t.” — Tara Lynn Knutsen

7. “I’ve been with my boyfriend three years and only got sick last year; however, I no longer feel beautiful. I love hearing him say it. I need to hear him call me beautiful and still compliment me like he did before I got sick!” — Michelle Rachel

relationships 3

8. “It’s not just about ‘being supportive’ in the abstract sense. I’ve had to ask my husband to help me get off of the toilet, to put on my shoes for me, to drive me hours to appointments. Saying you are supportive is hugely different than being willing to deal with the ins and outs of being caregiver to your spouse.” — Danielle Kristene Clapham

9. “I love having a partner who doesn’t think of every visit as ‘a doctor’s appointment,’ but understands that a re-check can be anything from a casual 20-minute conversation with my doctor to a 4+ hour-long diagnostic procedure. He adjusts his support level for each visit, knowing when I can handle it and offering extra help when needed.” — Sarah Moore

10. “I wish people knew plans cannot always be kept. My illness does not care if you have made dinner reservations or planned a weekend away — it will still flair up!” — Patricia Chamberlain

relationships 4

11. “My partner asked a lot of questions and made it a point to learn what my needs were in the beginning… I’d want people to know that we want people to ask. It’s hard to volunteer information, but sometimes it’s a lot easier when someone asks. I appreciate having a dialogue and feeling like the other person cares about being there for me despite my illness.” — Ariel Nicole

12. “It’s amazing when your partner becomes your advocate! I’ve had gastrointestinal pain and problems since middle school, but I didn’t get a diagnosis until I was in the first year or two of dating my husband almost six years ago. He was there with me, learning from me and with me, and now when I don’t have it in me to explain to friends why I can’t join in, or why I can’t eat something or have to leave early, he speaks up for me. He is also my advocate in that on days when my body is telling me I need a break.” — Jessie O’Brien

13. “Underneath it all, I am still me. Chronic illness does not define the person. Someone dealing with chronic illness still needs and deserves love and affection.” — Kelcey Wells

relationships 5

14. “[I feel] so much guilt about not being able to do things or go places. I miss family and friend functions and therefore sometimes so does he. He is a thousand times supportive, but sometimes I wish we could have a ‘normal’ relationship where mobility is not a factor and I could be a ‘normal’ girlfriend.” — Elly Hartley

15. “I think it’s important for others to realize how hard it is to watch our loved ones struggle with our illness as well. They feel just as helpless as we do as there isn’t much they can do to help us except to be there with us through it all. That loss of control hits both parties hard.” — Kat Bradley

16. “Patience is so important. You both have to learn how to manage this thing together. Try to always be open about what you are actually going through, so your partner understands the real you.” — Jessica Kelley Moye

relationships 6

17. “For me, it’s trying to balance having a partner, and having to call on them to be a caretaker. I always fear I’m not doing my part and being an equal in my relationship.” — Brigette McKern

18. “The hard part is when you talk to your significant other about what symptoms you’re having and they think you’re joking with them. Taking the time to really educate yourself as a partner is critical for understanding.” — Nikky Lynch

If you have a chronic illness, what’s one thing you wish people knew about what it’s like to be in a relationship while dealing with your illness? Let us know in the comments.

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