A year ago was the first time my family celebrated Rare Disease Day, which occurs on the last day of February. We celebrated with a simple Facebook post announcing that our 18-month-old daughter had recently been diagnosed with a rare genetic mutation. At that point, I wasn’t even putting a name to what she had simply because there was no official name.

In the United States, a rare disease or disorder is one that affects fewer than 200,000 Americans. When our daughter was diagnosed, we were told she was one of 10 others with her mutation. All we were given were a string of letters and numbers that tell us the name of the gene that spontaneously mutated. There was no syndrome name, no website to look up research, no foundation to donate money to, no awareness month, no guidance, no support. We barely told anyone the name of her gene mutation because we didn’t want people to Google it and find next-to-no information. How could we tell people what she had when we barely understood it?

But that was then and this is now. A year later, we have connected with about 25 families worldwide through Facebook. I’m sure there are families that aren’t on Facebook and, with the rising prevalence of genetic testing, more and more children are being diagnosed each day. Those are the families I’m trying to find, so I’m finally going to put a name to my daughter’s rare disorder: GRIN2B. Five letters and one number. GRIN2B is the gene that mutated that has caused my daughter’s developmental delays. Very little is known about it and we still don’t fully know what it means for her future.

“You either get bitter or you get better. It’s that simple. You either take what has been dealt to you and allow it to make you a better person, or you allow it to tear you down. The choice does not belong to fate, it belongs to you.” — Josh Shipp

I have been bitter. Not every day, thankfully. But on and off since the diagnosis. It’s incredibly isolating to be told your child’s diagnosis has no name and next-to-no information about it. I am the type of person who finds comfort in knowledge and believes there is strength in numbers. I cannot just sit and wait for information about my daughter’s diagnosis to be presented to me. Kind words are nice. Hope and faith and prayers are also very much appreciated. But what our family needs most of all is action.

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So here is the part where I’m trying to get better. Right now, when you Google GRIN2B, you will find basic information about the gene and a handful of medical articles which are very hard to understand for the average parent. And here’s the thing: Medical articles deal in fact — what a kid can and cannot do. But they don’t say anything about the child’s smile or the sound of their laughter or the feel of their hug. They don’t describe the fierce love we parents and siblings have, or the way having a child with special needs opens your eyes to so much in the world.

Because I remember all too well the feeling of despair and discouragement from initially Googling GRIN2B and coming up short, I’ve decided to develop a website to support all our families. This site will show what little facts we do know, but, more importantly, the faces of GRIN2B: the kids who are so much more than developmental delays and neurological differences. The website will be a chance for us to support each other, share resources, educate each other about ongoing research studies and tell our children’s stories. As our numbers grow, I dream of coming up with additional ways to promote awareness and build our community.

There is sometimes a stigma against labeling our children with their diagnoses, but a label doesn’t have to be bad unless we make it bad. When I say my daughter has GRIN2B, it’s not with the intention of wanting others to pity her or impose limitations. The only way I see to promote awareness and to help our family feel less isolated is to label her. Labeling and limiting do not have to be synonymous.

My daughter has GRIN2B, but she is not just GRIN2B. She is so much more.

To my fellow GRIN2B families and anyone looking to understand what this disorder means and how it affects our sweet girl, the website is in the works. To the newly diagnosed families, we are looking for you! Please reach out to us and help build our community. You are not alone!

young girl and boy playing together
Liz’s son and daughter

The Mighty is asking the following: What’s one unexpected source of comfort when it comes to your (or a loved one’s) disability and/or disease? 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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Navigating your way through the ups and downs of parenthood is tricky at times, and it can be complicated when you have a child with special needs. However, no matter the condition or how much or how little the child is affected, we all want the best for them. They mean the same to us regardless of their needs, and they have the same wants, needs and emotions.

Many times it is hard for parents of children with special needs to see things from their children’s point of view. That is where I come in.

A black and white photo of Carla as a child

I was born with spina bifida myelomeningocele and have a lifetime of experience to share — tips, tricks and shortcuts I have learned along the way that have made my life easier. I know the emotions of being that little kid wearing the braces, as well as those of the teenager who tries so desperately to find his or her place. That makes me, as well as anyone else who has lived with spina bifida, an expert on how to live with this condition.

I am also a mother. My husband and I have a 15-year-old son with spina bifida occulta. It is a less severe form of spina bifida, but it presents its own challenges.

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When my son was born and I first learned he had spina bifida, I figured, having lived with it myself, I would be prepared for anything. “This shouldn’t be a problem,” I thought. What I didn’t know was that being the patient can be so much different — and easier — than it is to be the parent.

Today, after being on both sides of the fence, I know what I feel as a parent and what I know from growing up don’t always fit together. I have often found myself in a tug of war between my head and my heart.

Since I have started communicating with the parents of children with special needs, I have always emphasized just how important it is for them to let their kids take chances and maintain a willingness to try new things. I have always felt that isolating a child from all life has to offer does a huge disservice to them. Everyone has the right to live their lives without fear, especially fears imposed by others.

I have spina bifida, so I know what it is to have people tell me I cannot do something. Yes, they had good intentions and no one wanted me to get hurt, but it didn’t feel that way to me. It felt as though someone else was trying to set my limits for me, and I didn’t feel that was fair. I understand not everything is safe. I understand there is a chance I might get hurt. I understand that people worry about me. I also understand that I can’t live my life to make everyone else happy. I understand that taking a risk is a choice; it is a choice I consciously make. I understand that, if I get hurt, it is my fault and no one else. I understand you only live once, so you had better get everything out of it you possibly can.

I also know how it feels to be the person doing the worrying. My son may have a less severe form of spina bifida, but he is still missing one vertebra and has holes in the majority of the others. He has some underdeveloped muscles in his legs and has had to have his neck fused at C1-C2.

I completely understand the need to protect your child from any harm. I understand the worry and anxiety parents feel about not wanting them to have to go through “any more medical crap” than they have already had to go through. I get all that.

This past weekend, I had to practice what I have been preaching. I always have, but this time was the hardest so far.

My husband likes to hunt. He goes on an annual bear hunting trip into the mountains, and this year, he felt our son was old enough to go along. When my husband told me he was taking our son, horrible ideas started going through my mind. Images of all the things that could happen rushed in, and I had this sick feeling in my stomach.

I did not want my son to go. I was worried for him and, as we all know, 15-year-old boys do not always have the best focus. I worried he would wander off or not know what to do if they did see a bear. My husband is more than capable of taking care of both himself and my son in those situations, and I knew he would keep my son safe, so I put that out of my mind.

I also worried about my son physically because of the weakness and bone issues spina bifida presents. As ashamed of myself as I am to admit this, I knew I could scare him. I knew what buttons to push; I knew that keeping him safe at home would help me sleep better. What was worse is I could absolutely justify it to myself, my son and anyone else by saying, “I just don’t want him to get hurt” or “You know it is going to be too much for him.”

The common word in all that thinking is “I.” It would make me feel better, but at the same time, it would make my son hesitate and limit him — and that is something I can never justify.

I had to have a conversation with myself. I had to remind myself that what I feel is natural, but that I know better. I know life is full of risk. I know my son may get hurt and may not be able to keep up, but he won’t know until he tries. To my husband’s credit, I don’t think he was concerned at all. He knew he might have to go a little slower from time to time or wait on our son, but it didn’t bother him at all.

The weekend approached and I still did not want our son to go, but I had to suck it up and do what I knew was best for him. I also knew I would much rather lose some sleep than make my child doubt himself. He was in good hands, so I kept it all to myself and told him to have a good time and listen to his dad.

I wondered the whole time how he was doing. They were literally climbing up the side of a mountain, moving the entire time from sunup to sundown. I wondered how much pain my son would be in from carrying his gun and whatever else he may have to carry with him. How were his legs going to hold up under that much activity?

But the first night when I spoke with my son, he went on and on about how much fun he was having. At that moment, I knew I was right, and I was really glad I had kept my mouth shut about not wanting him to go. He didn’t complain about anything physical. By the third day, he said it felt like something was ripping the muscles out of his legs and they really hurt. Of course my first instinct was to tell him to take it easy. I caught myself before I said it. I asked him if it was worth it, and he didn’t hesitate to say, “Yes!” I told him I was glad he was having fun, and we left it at that. I know he was in pain, but that is probably the best workout his muscles have ever gotten. The soreness would go away in a few days, and the workout would do his muscles much more good than it would harm.

My son continued through the five-day trip and was able to keep up. He had a great time with his brother, uncle and dad. Memories were made that he will carry with him throughout his life. Most importantly, he won’t be afraid to do something like that again. He doesn’t know I ever doubted his ability, so he didn’t know to doubt it himself and proved me wrong. All the limits I set for him in my own mind I chose not pass along to him.

Mom and son posing for a photo outside before son goes to prom

I firmly believe that, as parents, we hold more power than the disability does in the lives of our children. Most of the time, our children will believe us when we tell them they cannot do something or that they cannot have something they want. Sometimes we will be right; but most of the time, if they are given the freedom, I believe our children will prove us wrong.

As someone who has grown up with special needs, I know what it feels like to have well-meaning people try to hold you back. I know that is completely unfair and can destroy someone’s will to go out into the world and try to make a good life because of the fear it is unattainable.

I know, as a parent, how strong the need to protect is. I have been there in the waiting room during my son’s surgeries. I have been at his bedside and seen how vulnerable he has been. I know the need to do everything possible to keep him from ever having to experience anything like that again.

I am in a unique position: I have been on both sides of the fence. I can tell you that being the patient and being the parent are two completely different experiences. They do not have anything in common, and I have learned that the parents, in my opinion, have the worst end of the deal. The kids don’t know fear unless we teach it to them. It is only fair to let them explore life on their terms, without hesitation and without fear. As parents, I don’t think it is possible for us not to feel some fear for them; but no one knows what they can accomplish, so just let them try. You will be surprised.

It is my hope that other parents can take an example from some of the things I have learned so that they can continue to learn and develop a better understanding of their own children with special needs. I can personally say I understand my parents in a way I never could before.

A version of this post originally appeared on the Huffington Post.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, 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 Submit a Story page for more about our submission guidelines.


Attention-deficit/hyperactivity disorder (ADHD) is much more than an inability to pay attention. For people with ADHD, the challenges associated with it can affect every aspect of their lives.

The Mighty teamed up with Children and Adults with Attention-Deficit/Hyperactivity Disorder (CHADD), a nonprofit aimed at improving the lives of people affected by ADHD to ask people who have ADHD how they would describe their condition to someone unfamiliar with it.

This is what they had to say: 

1. “It’s like opening 100 tabs in your browser at once and trying to do something different in each one at the same time. Then someone walks up and wants to have a conversation.” — Jennifer Arnott

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2. “It’s like trying to listen to your favorite show with really bad noise disrupting the signal. All the while, loud children are screaming around you and throwing things.” –C hristine Ashley

3. “It’s like being a cat with 100 people with lazer pointers.” — Jamie Hynds

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4. “It’s like ‘The Big Bang Theory’ theme song… There’s so many random things happening at a fast speed.” — Junique Groenewald

5. “Picture a room with 1,000 TVs with each TV showing something different. Now try and concentrate on just one TV with out getting distracted.” — Damian DaViking Aird

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6. “Jack hammers. Lots of them in my brain. And a parade. With clowns and balloons and banners, and a marching band and strobe lights. When people talk to me it feels like someone is popping bubble wrap in my ears.” — Sophie Moir

7. “You know when you go into a room and completely forget why you went there in the first place? Its like that, but all day with everything you do. Or imagine throwing a bunch of different colored bouncy balls on a trampoline and trying to focus on one.” — Brie Braun

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8. “It’s like my mind is racing in the Daytona 500 and my body is a bumper car stuck in reverse.” — Flossie Mae Kay

9. “It’s a permanent tornado whirling around my thoughts. They are like books flying around in the wind and people outside only see a fraction of the storm inside.” —Theresia Waalderbos

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10. “It’s like a vortex of running thoughts, ideas, feelings and ‘aha’ moments. It’s difficult for some to understand but the moments of ‘Wow, that’s a great idea,’ make up for the years in my adolescence that kids and teachers got mad at me for my outbursts. I like the speed of my mind maps; it keeps things interesting.” — Caitlin Malley

11. “[It’s] like falling down a rabbit hole on your way to do something else every two minutes.” — Jen Dozer

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12. “It’s like an old train — slow to start, but a veritable force once going. It may pay heed so as to stop for passenger transfers (the details) along the route, but despite its inattention to the cities it passes, it’s focused on its goal.” — Jennifer Young

13. “My mind is in 100 different spots at once. Each of them seems equally important to get done and it seems like I have to get them done all at once. I bounce from one thing to another. My mind is in a fog that I can’t clear. A thousand thoughts race through my head all at once.” — Mike Moon

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14. “For me it is a constant struggle to remember — to remember what needs to be done next, what needs to come first, what I need to bring for an appointment, when an appointment is, what time I need to leave, what I have to make dinner with, when I need to pay a bill, and that’s just one day. I can have a dozen color coded sticky notes on the walls and a whole variety of alerts and reminders on my phone, but as soon as I look away the the thought has disappeared.” — Angelique Landy Borgmeyer

15. “It’s like being in a foreign country with no clock or calendar where no one speaks your language and you have to find your way around, go to work, go to school, go to the shops while finding a way to communicate with others when everyone around you is speaking loudly all at once in words you don’t understand.” — Niamh McSherry

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16. “It’s like there is a hamster wheel in my head. And the hamster runs fast.” — Maria Mikhail Volpe

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17. “It’s your eyes wanting to go 30 different ways to take in all the visual info while also thinking of what you’re doing, how you’re doing it, any shift in the environment, song lyrics that randomly pop up, the physical reactions of others, with every possibility racing through your mind every millisecond. Then it’s not being able to ever sit still, shaking yourself to sleep at night with energy, tapping anything (foot, hand, pen, etc.) and being constantly jittery and jumpy.” — Zoe Klumph

18. “It’s like driving around for hours and finally stopping to ask for directions and someone tells you that you’re not lost.” — Emily Jane

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If you have ADHD, how do you describe what it feels like to others? Let us know in the comments below. 


Mallory Hamilton’s 19-year-old daughter Harley has Down syndrome and autism, and after an incident at a local movie theater, Hamilton began to wonder what might have happened if the situation escalated and police officers became involved.

Harley Hamilton was at the Tikahtnu Regal Cinemas in Anchorage, Alaska, with her aide, and after she became stressed, theater staffers grew concerned about her behavior and threatened to call the police if she was not removed, according to Alaska Dispatch News (ADN). (Regal Cinemas has not responded to requests for comment from The Mighty regarding the incident.)

Hamilton’s aide helped her out of the theater, but the experienced rattled the teen — and her mother. “You just don’t have any idea as a parent what is going to happen. It’s your worst nightmare,” Mallory Hamilton told ADN.

Fortunately Anchorage has the Crisis Intervention Team, a volunteer training program that helps educate its officers on how to handle individuals with special needs. Officer Matt Fraize, whose daughter also has Down syndrome, is a member of that team, and he and his wife Angie, who is also a cop, had an idea when Hamilton approached them asking for help. Matt Fraize would meet with Harley Hamilton for coffee at Sagaya City Market in Anchorage, and hopefully establish a positive outlook on law enforcement officials.

LOREN HOLMES / Alaska Dispatch News Harley Hamilton, a senior at West High living with Down syndrome and autism, meets with Anchorage police officer Matt Fraize at Sagaya City Market on Wednesday, Feb. 24, 2016. Hamilton’s mother, Mallory, wanted Harley to meet a police officer so she would learn to trust them in the event they were called to a situation where they would have to interact with her.
LOREN HOLMES / Alaska Dispatch News
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Hamilton has now had two meetings with Fraize, who told The Mighty he’s already seen a positive result.

“Harley asked me to sit right next to her, which her mom told me is very rare,” Fraize told The Mighty. “Harley was really excited to see my police car and she jumped right in the back seat.”

“I see these positive interactions with Harley and others in this community as paving the way for a more accepting and tolerant future for them,” Fraize said.

“I could not have asked for a better experience,” Mallory Hamilton told ADN. “They took the time and gave us the opportunity for peace of mind, which for me is huge.”

Michelle Slape, executive director at International Down Syndrome Coalition (IDSC), told The Mighty in an email:

“With the growing number of adults with Down syndrome living independently, working within the community and having independence, there is a great need for those outside of the Down syndrome community to understand the behaviors and mannerisms of individuals with Down syndrome (and other disabilities). What may be perceived as an aggressive behavior may in fact be a coping behavior when in a stressful situation. As parents, our job is to not only guide our children into becoming independent adults, but to help educate those around them of what Down syndrome is and isn’t. Old stereotypes of Down syndrome are constantly being broken. It is now a matter of helping to educate our communities.

I hope that eventually the Crisis Intervention Team program finds its way to every state.  Not only will it benefit the disability community but society overall. We can only hope that others will follow the lead of the volunteer officers and learn to have compassion for those with disabilities.”

LOREN HOLMES / Alaska Dispatch News Harley Hamilton, a senior at West High living with Down syndrome and autism, gives Anchorage police officer Matt Fraize a side hug at Sagaya City Market on Wednesday, Feb. 24, 2016. Watching at left is DeVon Brentlinger, one of Harley’s caregivers.
LOREN HOLMES / Alaska Dispatch News

To read the full story, visit ADN’s website and Facebook page


Have you seen the first film with a national release to star a person with Down syndrome? Check out the film “Where Hope Grows” today!

Available for purchase on Amazon and iTunes.


If I could take it away…

If I could take it away, maybe your life would be easier.

If I could take it away, maybe you wouldn’t have to struggle so much.

If I could take it away, maybe you could be able to talk.

If I could take it away, maybe you could say, “I love you, mama.”

If I could take it away, maybe you wouldn’t be so frustrated.

If I could take it away, maybe you would make friends easier.

If I could take it away, maybe you would sleep more than a couple of hours a night.

If I could take it away, maybe you wouldn’t have your sensory issues.

If I could take it away, maybe you wouldn’t get so overwhelmed by your surroundings.

If I could take it away, maybe you wouldn’t have food issues.

If I could take it away, you wouldn’t be you.

If I could take it away, I wouldn’t.

If I could take it away, I really wouldn’t because I love you for who you are. Autism is a part of you, a part of your personality, a part of your character, and I’d never change you.

Baby boy, you are perfect.

Boy in striped blue and white hoodie standing outdoors

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Follow this journey on Gym Bunny Mummy.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, 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 Submit a Story page for more about our submission guidelines.


Dear Elizabeth,

Well, you were right — it was an autism spectrum diagnosis.

You know what else you were right about? That everything is going to be OK; that this is the first step on a path that is going to good places for your son; and that the struggles he has experienced were neither your fault nor his.

The lightness you feel? That is the weight of guilt and worry off your shoulders.

There is more, too. Once you and your husband figure out what your son, the Navigator, needs, you are going to work as a better team than you ever have.

There will be curveballs. That job you love? You will quit it; you love your son more. Those plans you made? You will put them on hold or even make new ones, some of them better and more fulfilling ones.

Yes, there will be a sense of loss, but really only the sense of loss that comes with the learning curve of taking on new challenges — losing the feeling that you knew what you were doing and the comfort of the rote.

Honestly, though, how was thinking you knew what you were doing really working for you? Not so well. With this re-learning, things will work better.

But not perfectly — don’t expect a diagnosis to solve everything. It won’t. There will still be challenges, difficult ones that will last for years. There will be things you will have to let go of as you accept who he is.

There will be fights you will fight for him — and you will find you will be more able to fight for him than anything you’ve fought for.

You will gain important new perspectives and make friends you have never met. You will broaden your compassion and understanding.

Your life will become rich and full in a way you never dreamed, much different than you ever imagined. For now, take it one day at a time. Things will be a little chaotic until you settle into the new reality.

Be kind to your husband, your son and yourself. Be patient with family who may be confused or dismayed by the diagnosis — they will come around and be supportive.

You will feel like you need to learn everything at once. Do the best you can and follow the school’s lead. They have a lot of knowledge and will guide you as they work with your son.

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Because you were right: everything is going to be OK.

Love,
Me

Follow this journey on Autism Mom.

The Mighty is asking the following: Write a letter to yourself on the day of the diagnosis. 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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