Rachelle's Church.

I’ve spent the majority of my adult life mentally assessing how friendly a church is to those with disabilities. In my early and mid 20’s, I had a career as a direct support professional and house manager for a group home for adults who had developmental disabilities. The majority of the housemates under my care were Christians of various flavors, and so we would make the rounds from church to church every weekend. And every weekend, I found myself either delighted or disgusted with what I witnessed.

Some church leaders and members went above and beyond to love and include my friends. Others were merely apathetic, finding their presence an inconvenient thing to tolerate out of “Christian” charity. But worst of all were the churches who actually turned these individuals away from congregational worship, either subtly or not-so-subtly.

Co-workers knew which local churches fell into the latter category, and many of us had spent time consoling housemates when the people who were supposed to be their brothers and sisters in Christ rejected them due to their disabilities.

I eventually quit my job when my own child, Katherine, was born. Once again, I had to consider what it meant for a church to truly love someone with disabilities, because Katherine was born with several of them. Thankfully, the two churches we’ve been a part of since our daughter’s birth have done a tremendous job loving and serving our special needs daughter and her family.

Here are five ways they have shown their love for us and our daughter.

1. They are consistently praying for us and with us. This seems like an obvious answer, but it’s often the forgotten one. Our family needs prayer daily, and we want our friends to pray with us. We need them to hear us be vulnerable in front of God. We need them to hear us confess our fears and offer praise for Katherine’s milestones and successes. To pray for us and with us is a great way to develop understanding.

2. They are willing to consider their own mistakes and ignorance. I’ve sometimes had to confront my Christian friends on their prejudices. It’s as awkward as you might expect, but it’s something that has to be done if you want your church to embrace diversity and inclusiveness. But there is a lot of resistance to this sometimes.

Once or twice, I’ve asked people not to use “the R-word” in front of my kid, only to be met with rolling eyes and rants about political correctness. It can be disheartening to ask for kindness from other Christians, and receive callousness instead.

However, there have been more encouraging moments than discouraging ones. There have been many times when I’ve spoken to friends in the church about ignorant words or behavior, and witnessed genuine humility. There’s incredible power in the phrase “I didn’t realize how hurtful that was, will you please forgive me?” When our church friends are willing to seek reconciliation and understanding, it sends a message to our family that we are their family. And that it’s worth abandoning their pride for our daughter’s dignity.

3. They are patient with our family. We are not perfect people either. One day, I’m pridefully annoyed with offers of help. The next day, I might be frustrated because I feel like I don’t have enough help. Our daughter’s emotions can change suddenly, and she sometimes becomes frustrated because she can’t communicate well.

My family’s emotions, decisions, finances and schedules are often erratic. The exhaustion, frustration and anxiety we deal with as special needs parents sometimes leads us to lash out. Our church family understands that sometimes, my husband and I are the ones who need forgiveness. And they readily give it. No questions asked.

4. They help us in the practical things, so we can focus on the areas that require more experience. While it’s undoubtedly kind to offer help, there are just some areas where you aren’t going to be able to assist. You probably can’t sit through a two-hour neurology consult for us. You probably don’t have the experience to weigh in on her medication regimen. But you can do a lot of other things to care for us if you want to share the load.

We’ve had several friends from church do our laundry for us when Katherine was overbooked with appointments. Other church members have made us meals when she’s had procedures done. Our church elders have tried to ensure that our church building is physically accessible and safe for those who have disabilities. Helping with the seemingly simple stuff can give us some breathing room and renewed energy for all the things we have to tackle alone.

5. They love our daughter for who she is. My daughter’s identity is not her disability. She is more than cerebral palsy or blindness.  And yet, her disabilities certainly affect her experiences, and shape the way she views and interacts with the world and our church.

So how does a church family respond to such nuanced identity politics? Well, our church doesn’t identify her as “other” and pull away out of fear. Nor does our church merely tolerate the presence of her unique perspective. In our church, our daughter is valued as an image-bearer of God and recognized as a part of the family. They understand that her experiences and points of view are beneficial to the church body, and embrace her fully.

Any church who manages to grasp this aspect of caring for special needs families will not struggle as much with the rest of the details.

Follow this journey on Each Passing Phase.

RELATED VIDEOS


My son Stanley finds most uniforms uncomfortable because of his sensory differences. Being comfortable and secure is important to him, not necessarily the way he dresses or looks. So where does this leave us in two years when he has to go to school and comply with these uniform expectations for children?

Three kids wearing school uniforms, two of them holding stuffed animals

See my daughter Lola’s socks in this photo? She was having a particularly bad morning, and when she’s anxious, she likes to wear brightly colored socks. I put a note in her diary along with some white socks to change into. Hopefully they’ll understand and not send her home, but will Stanley have that luxury? I’m worried.

I agree that children should dress appropriately for school, that it can prepare them for the wider world, and that rules are rules. But not everyone is going to have a job that requires them to dress so strictly. Yes, some will, but what about those who wish to be a builder? A swimmer? Or those who wish to pursue a career in acting or dancing?

Who makes up these rules, and do they use a set of guidelines? If so, who wrote them? Did they think every single child would be able to comply 100 percent with these rules? Are they setting up children to fail? What is the purpose of the strict uniform guidelines? To make everyone look the same? To better their learning and opportunities? To make them concentrate more? Do the people who make these guidelines have children? Do they have children with special needs? Or memory problems? Issues with executive functioning? Sensory difficulties? What about children who have difficulty dressing themselves due to hyper mobility, low muscle tone in hands and fingers, or coordination difficulties? Who will support these children? And is having such a strict uniform policy going to enrich their future? Make them more successful?

Wouldn’t it better if everyone was comfortable? And wouldn’t it enhance their concentration and attention if they didn’t have to worry about what they looked like? I just wish the people enforcing these polices could fully understand the true difficulties some children face when presented with an itchy, scratchy, fiddly, complicated uniform policy.

Are these rules going beyond trying to teach children the way of life, or are they justified?

I’d like to hear how this situation has affected other families, whether you have children with any special or extra needs or not.

Follow this journey on Autism With Lots of Love And Affection.


Schwartz-Jampel syndrome.”

Giovanni smiling.
Giovanni.

The first time I heard those three words, I was surrounded by physicians explaining this was what our 2-year-old son, Giovanni, had. Even though we knew he had a form of dwarfism during our pregnancy, now we finally had a name. At that moment, I looked at my husband, terrified while he tried to reassure me everything was going to be OK.

Now questions filled my head. What does Schwartz-Jampel syndrome (SJS) mean? How could this happen? Our geneticist proceeded to tell us that Giovanni was a very special case because his genes showed novel mutations, meaning his type of SJS had never been seen before. He then asked us to sign a waiver so Giovanni’s photographs and medical history could be used to teach others about his type of SJS.

I went numb. I was relieved he was finally diagnosed, but terrified he had an undocumented type. Thankfully, our geneticist informed us that SJS was not lethal, but we needed to keep monitoring him medically so nothing life-threating popped up. Whew.

After a few more questions, I asked our doctor if there was a way I could get in contact with other families living with SJS. He told us the chances were slim since SJS is so rare, and that less than 100 cases have ever been reported since its discovery. His hospital had only seen a few cases of SJS up close and told me that he could count the cases on one hand — including Giovanni.

I felt like the wind was knocked out of me. We were alone. Completely and utterly alone.

A few years later I decided to try to reach others living with Schwartz-Jampel syndrome by creating a Facebook awareness page for Giovanni. I needed to talk to someone, anyone that understood what our life was like. Giovanni had already had three surgeries up to that point, and we felt so alone in this battle.

Giovanni in a hat that says "TLC"
Giovanni.

It wasn’t long after we established Giovanni’s page that a message came through from Kimi, the mother of a boy named Owen. There was an immediate connection. Here was a mother feeling the same feelings I was experiencing. She had the same concerns. Our boys looked like twins! I was ecstatic! But, there was a whole ocean between us. Owen and his family live in England and ours is in Pennsylvania. Families like ours are always so tied up with medical costs, I knew there was no way we could afford to visit. There was no way I could hug Kimi and just tell her face to face that I understand. We maintained our friendship though and messaged back and forth. Giovanni and Owen sent videos back and forth. That was all we could do.

Then, a miracle came.

We were contacted by a production company with the concept of the show for TLC’s “Two In A Million” series. Immediately we jumped on it! I remember during our initial call, they asked us if we knew of anyone else with SJS. Giovanni and I both yelled Owen’s name at the same time! None of it seemed real, at least until Owen, Kim, and Will came around the corner. Giovanni was beaming while I was so overwhelmed I began to cry.

Finally, my son could play with a child that was just like him.

Finally, I could hug a mom who understood all the fear, guilt, and sadness I felt regarding my son’s diagnosis.

Finally, we were not alone anymore.

Giovanni and Owen.
Giovanni and Owen.

It is amazing to us how natural it all was. Spending a week with them was like spending a week with my family. I don’t think either of our families were expecting the bond that happened almost instantly between us. Giovanni and Owen were playing on the first day like they had known each other all their lives. Owen was the first child Giovanni had really spent time with that uses a walker and wheelchair like he does. Prior to meeting Owen, Giovanni was never interested in using his wheelchair because he couldn’t stand it when people would stare. Owen helped Giovanni get past that. Since Owen is a bit older than Giovanni, Giovanni really looks up to him. If Owen didn’t mind being in his wheelchair, why should he? After that, Giovanni sat taller in his wheelchair.

For me, meeting Kim changed everything. She and I talked for hours and hours about everything to do with the boys and other things. It was so therapeutic and just wonderful to know I could say anything I wanted to say. Kim wasn’t going to judge me. She felt everything I felt too. I was so heartbroken to see Owen, Kim, and Will leave, but I was so much stronger because of meeting them. I was refreshed and ready to fight Giovanni’s next health battle. We weren’t alone anymore.

After the amazing experience we had meeting a family like ours, I am convinced that everyone with a condition, rare or not, should seek out others that have the same condition. The connection you can make with someone who understands you completely is invaluable.

You need someone you can be your whole self with.

A person that can celebrate your triumphs and a person to support you during your struggles.

Someone just like you.


On Wednesday, Priscilla Chan and Mark Zuckerberg, co-founders of the Chan Zuckerberg Initiative, announced a plan to invest $3 billion over the next 10 years as part of an initiative to “cure all diseases” by the end of 21st century.

Chan, a pediatrician, and Zuckerberg, the founder of Facebook, launched the Chan Zuckerberg Initiative in 2009 to “advance human potential and promote equality.” The initiative, which had previously been focused on personalized learning, is now turning its attention to the scientific and medical community.

The pair hopes their investment will cure, prevent or manage disease within their 10-month-old daughter’s lifetime. “That doesn’t mean that no one will ever get sick,” Chan said in an announcement on Facebook Live. “It just means that our children and their children will get sick a lot less. And when they do we should be able to detect or treat it or at least manage it as an ongoing condition.”

Chan and Zuckerberg spent two years speaking to scientists, engineers and medical professionals, all of whom, the pair said, believe such goals are possible. To illustrate his point, Zuckerberg pointed out that most of society’s medical innovations – antibiotics, vaccines, chemotherapy and other medications like insulin and statins – were developed over the past 100 years.

As part of its plan to “cure all diseases,” the initiative will focus on bringing the scientific and engineering communities together, building new tools and technologies, and providing new avenues of funding for scientists. The initiative’s first investment will be a $600 million “Biohub” that will bring together scientists from Stanford University, UC San Francisco, and UC Berkeley to develop new tools to help understand and treat disease.

“This is going to be a long-term effort,” Zuckerberg said. “We’re going to invest billions of dollars over many decades, but it’s going to take years before the first tools get built and years after that until they’re first used to cure diseases. So we have to be patient. This is hard stuff, but it’s important.”

You can watch the couple’s full announcement below:


For some students, lunchtime is the most stressful period of the day. If you are new to a school, missing friends in your lunch period or have been bullied, finding someone to sit with can be challenging. To help make school cafeterias more inclusive, 16-year-old Natalie Hampton created “Sit With Us,” an app that lets students find someone to eat lunch with.

Hampton created the app as a response to being bullied in middle school. “At my old school, I was completely ostracized by all of my classmates, and so I had to eat lunch alone every day,” Hampton, now a high school student in Sherman Oaks, California, told All Things Considered. “When you walk into the lunchroom and you see all the tables of everyone sitting there and you know that going up to them would only end in rejection, you feel extremely alone and extremely isolated, and your stomach drops.”

“Sit With Us” allows students to coordinate lunches, opening up their tables to friends and other students who might not have a place to sit. The app also lets students act as ambassadors and post open lunch events on campus.

Screenshots of the apps different features
Credit: iTunes App Store

“I believe that every school has upstanders like me, who are happy and willing to invite anyone to join the lunch table,” Hampton wrote on the “Sit With Us” website.. “It is my hope, with people pledging to be Ambassadors at their schools, that no one will feel left out.”

So far the response to Hamilton’s app has been positive. “I had my first club meeting the other day, and everyone was very excited,” Hampton said. “People are already posting open lunches at my school. So I’m very excited that things are already kicking off with a great start.”

App users seem to love the app too. The app has a four-and-a-half star rating in the app store with 38 reviews. Those interested in downloading “Sit With Us” can purchase it for free in the iTunes app store. “Sit With Us” is currently unavailable for Android devices.


We can get to this point in life where we don’t think we will ever come out of the darkness. The light is so far away that we can’t even see it, and it seems our flares and bad days will never end.

Whether it’s depressionanxiety, migraines, fibromyalgia or anything else you may have, here are ten things to remember when you think things will never get better.

1. Life is a cycle.

It’s a continuously shifting balance of up and down. If it’s down season right now, ride it out. The seasons will change again.

2. If you need help or if you’re a danger to yourself or others, go to the hospital — now.

It may seem like the worst place in the world, but the goal of hospitalization is to get stable in the least amount of time as possible.

3. Try mental health therapy, no matter what your diagnosis is.

We know our family and friends may be tired of hearing us complain, but we can’t keep it all in either. Find a therapist you connect with and share whatever you want. Therapy is a safe place with no judgment, and it’s all confidential. The National Alliance on Mental Illness (NAMI) even has a Crisis Text Line so you can be connected with a crisis counselor.

4. Ask for help. Don’t be stubborn.

I know we’re warriors and don’t want to ask for help, but when we’re hurting, we need help. Sometimes we don’t need help, and sometimes we need a lot of help. Don’t force yourself to go downstairs to get the water if you only end up falling down the stairs. Trust me, that only makes it worse.

5. You are not a burden.

Let me repeat that because so many of us feel that way: You are not a burden. You are a wonderful, loved, cherished person.

6. Listen to your body. 

Your body sends you signals for a reason. Pay attention to them. If all you want to do is sleep, then sleep. Sleep is restorative and healing. If you need medication, then take medication. It’s not weak. It’s taking care of ourselves.

7. Find people who understand.

Many of us aren’t able to leave our homes easily, and therefore, we might have to go online to meet some new people. Conduct some Facebook searches and find a good support group for your condition or read articles or find forums. That always helps me.

8. Share your story.

It externalizes it from yourself. You can do this by writing a journal, talking to people and starting a blog. Take your story and use it to do some good.

9. Don’t apologize.

This is not your fault. These things are out of your control, and it’s a disease, a disability or a sickness. You have no reason to apologize. (I’m still working on this one, too.)

10. Never give up.

Find something to hold on to. A pet that needs you take care of it, a family member to lean on and all the people in your corner. Music is also great. Find some empowering tunes that you can sing along to. Find music you love and put on some headphones. Jam out. If you can drive, roll the windows down. Drive on a road where there’s not a lot of congestion and you’re surrounded by nature. Turn the music up, drive and sing your worries away.  

You can do this. You will do this. It will get better. All progress, no matter how small, is progress. I’ve been down and out enough, whether manic or bottom of the pits of depressed, suffering from extreme panic attacks or all of my chronic conditions are flaring at once, and I can’t see my way out of it. But my love repeats these words to me: “It’s just down season. It will get better.” And it’s true.

You are important. You are loved. You are the world to someone. You are worth not giving up on, and it will get better.

Follow this journey on Living Without Limits.

If you or someone you know needs help, visit our suicide prevention resources page.

If you need support right now, call the Suicide Prevention Lifeline at 1-800-273-8255. You can reach the Crisis Text Line by texting “START” to 741-741.

Real People. Real Stories.

8,000
CONTRIBUTORS
150 Million
READERS

We face disability, disease and mental illness together.