Kelly Mantoan

@kellymantoan | contributor
Mom to five, two with Spinal Muscular Atrophy, loving life while constantly trying to protect her toes from powerchair wheels. My family isn't weird or different, just a kind of normal you're not used to!
Kelly Mantoan

What Has Helped Me Grow As I Parent Kids With Disabilities

Every year around my middle son’s birthday, I can’t help but reflect on his diagnosis of spinal muscular atrophy and his 1st birthday (which fell a little over a week after we got the news). As each year has moved forward, it’s become clear that his life, by all accounts, is pretty awesome. The painful emotions I wrestled with in those early weeks and months following his diagnosis, while easily recalled, are now a part of my past, not present. But in retrospect, I now see what made this growth possible for me. I wanted to share six things that helped me in my journey as a parent of children with a disabilities, and continue to provide support. 1. Connecting with national charities and support groups related to my child’s condition. For me, that’s the MDA and CureSMA. Groups at a national level usually can help pass along information about important legislation, treatment, drug trials and standards of care that local doctors might not know about. Their fundraising helps fund new studies and programs that directly benefit member families (like MDA camp). National organizations usually put out publications and regular correspondence that keep families in the loop. If your child has a rare disease, it’s good to know there’s other families like yours out there somewhere, even if it’s not your backyard. They’re a good first place to look to make connections. 2. Connecting with local charities, organizations and support groups. Personally, I’m connected with the MDA locally as well, and I’ve been working with my son’s nursing agency to help build up a local support network for medically fragile families. There’s also opportunities through his school to connect with other parents, and we’ll continue to participate in Challenger Sports. These groups might not be disease specific, but bring together people locally who can still relate to the challenges of parenting a child with disabilities. If you want to know about state programs, local opportunities, etc. these are your go to folks. 3. Reaching out to other parents directly on social media. Once I found one contact, I simply asked to be put in touch with other families and within a short amount of time I found another homeschooling mother with two boys with SMA, and numerous other moms I could message with my questions and concerns. It may seem strange to message strangers out of the blue, but when your children share the same diagnosis, you’ll find it much easier to introduce yourself and immediately launch into detailed medical histories. At the same time I was messaging people, I also joined several SMA groups on Facebook. Depending on your child’s diagnosis, you might not be able to travel, so asking questions online quickly becomes an easy way to learn and meet new people. Joining the community on The Mighty was the next step for me, and it’s been another great way to connect with parents. 4. Reading blogs and websites by people with SMA, and other adults living with various disabilities. I learn as much from disabled adults, and sometimes more, than from other parents of kids with disabilities. I’ve learned how I need to better advocate for my sons, and help them thrive in an ableist society. And most importantly, I learned that disabled people are happy and not spending all their time wishing they weren’t disabled. My sons don’t need to be cured to live happy, fulfilling lives, and there’s a lot of peace and freedom that comes from that realization. 5. Writing. It’s how I work out my thoughts and feelings — whether it takes the form of blogging, journaling or scribbling down pages of random lists in order to organize my scattered thoughts. My keyboard has served as my therapist and people can read the fruits of this journey as it’s manifested itself via my blog, or here on The Mighty. Not everything has been for public consumption; however, sharing some of it, and receiving feedback, continues the growing process. I’m always humbled when my writing helps someone, and I’m sure to comment or email another blogger or writer when her words provide a virtual hug or fist-bump. 6. Making time for my marriage. My sons require a lot of time and care, and then I have three other children who need my love and attention as well. Plus I homeschool! And the house is a mess! But my husband and I have never used any of it as an excuse to not spend time together and that’s blessed our relationship and our family. (Even when the only time we manage to be together is spent in a hospital cafeteria, or late at night after everyone is finally asleep.) A serious medical diagnosis can wreck a troubled marriage and strain even the best. But we’ve managed to survive and thrive together, all while providing for the needs of our disabled children. Every parent will need to travel the road of disability in their own way, but hopefully, you know you don’t need to travel it alone. Find the way that suits you best to connect with those who understand your journey and can support you best.

Kelly Mantoan

How To Teach Your Kids About Disabled Kids Like Mine

I received an email from an old friend whose child was going to be meeting my two youngest sons for the first time. Her child didn’t know anyone else in a wheelchair and she wanted to know how to prepare him to meet my two sons who have spinal muscular atrophy, and use powerchairs for mobility. She didn’t want him to say anything rude or stare. She wondered if she should check books out of the library, buy a doll in a wheelchair, do some play acting, or run through a litany of potential situations and what he should say. While I was very impressed with all her ideas, I quickly insisted that building up the meeting was a last minute effort. Here’s a bit of what I did share, along with some other tips. 1. Make disabled kids and adults a regular part of your child’s world now. More and more shows for children and adults include characters with disabilities. You don’t need to point out every instance of a person in a wheelchair, but just make sure these shows are part of your child’s regular viewing. Also, pick up a few books about disabilities on your next library run. (Some ideas.) You don’t need to make a big deal about it, just read the story and follow your child’s lead. If they ask questions, answer them, and if you don’t know how, look it up! Don’t be afraid to say the name of a diagnosis. All my kids want is to be viewed as “normal.” You make that possible but exposing your child to disabled adults and kids as much as possible. 2. If you’re not sure how they’ll respond when meeting a disabled person for the first time, mention the upcoming get together and show a picture of who you’re visiting. Then answer your child’s questions as they arise. “Why does that child in the picture use a wheelchair?” Don’t make a big deal of it, just answer his questions. You can also share other facts about whomever it is you’re visiting. “Yes, my friend’s son uses a wheelchair, but look at his T-shirt, he likes Marvel just like you. And see the Minecraft logo on his hat? You love that game, too. I bet he would love to talk to you about that.” 3. Watch your words. Avoid saying something is “wrong” or “not normal.” Disabled children are not typical but their life is completely “normal” to them. And their disability isn’t “wrong” or an indication that they’re “sick.” It’s just who they are. Your child may express sadness that a disabled person can’t do something (walk, see, talk, etc.) Stress that the disabled person or child’s life isn’t sad, and he or she doesn’t feel sad all the time because of his or her disability. Disabled children and adults also aren’t inspirational or heroes just for existing and doing normal things. Your child doesn’t need to celebrate or praise everything my child does. Avoid saying words like “strong,” “courageous,” “brave” or “heroic” unless my child has just won an Olympic medal or climbed Mt. Everest. 4. Model good behavior. Your child will follow your example. If you tell your child to be friendly and treat my child like any other child, but then come over and pat my 10-year-old on the head and talk down to him like he’s a baby, your child will assume the same attitude. 5. Make sure your child knows he doesn’t have to become my son’s best friend or helper. You child also doesn’t have to do everything my son wants just because my son is disabled. If my son is being bossy and mean, it’s OK to not play with him. And if my son needs help but is rude about asking, you child can wait for him to use his manners (like I insist of all my children). My disabled kids sometimes need help, but they are not spoiled or babied. 6. Wheelchairs and medical equipment make a disabled child or adult more independent. Your child doesn’t need to focus on the chair, but let them know it’s something to be happy about, not a reason to pity someone. And they can’t touch it! Never ever! It’s not a toy, like, the best Powerwheels ever, or something. It’s an extension of the person using it. If your child doesn’t like strangers touching him, he shouldn’t touch the medical device of someone else. Even service animals are off-limits, no matter how cute and cuddly. 7. If you want to spread awareness to a group of kids (scouts, club, classroom) use reliable resources created by disabled adults. Having a group of teens take turns in a wheelchair doesn’t mean they now know what it’s like to spend life in a wheelchair. They just might have a better idea of how the building they’re in is not accessible. They need to hear from disabled people about the challenges and joys they face, not what able-bodied people think life with a disability looks like. Embarrassing comments and stares may still happen: don’t stress about it! The more your child becomes used to being around disabled children and adults, the less out of the ordinary it will seem to them.

Kelly Mantoan

How to Support a Family Facing a Life-Changing Medical Diagnosis

When spinal muscular atrophy entered our family’s lives in 2009, most of our friends and family had never heard of the disease or even knew anyone with a disability. As we struggled to understand what this diagnosis meant for our son and our family, our loved ones struggled with how to help us through this initial difficult time. I was in no position back then to clearly articulate what I needed, and consequently, I often felt alone. In hindsight, I can see what I needed most and how the kind actions of those few people who did “get it” made a world of difference to our family in those early days. If someone you know just received a life-changing medical diagnosis for herself or her child, here are a few ideas for welcome help and support you can offer. First, just quietly listen. Don’t judge, don’t offer advice and don’t try to relate to how they’re feeling. Don’t. Say. Anything. And if possible, try not to cry. Listen patiently and be strong for them. People dealing with dire medical predictions are going through a wild range of emotions which are perfectly normal. Their feelings may seem extreme to you, but I can say from experience they are common. You may recognize the seven stages of grief even if the parents themselves do not. If you can provide a safe ear to confide in, you needn’t do anything else. If you are concerned, suggest professional counseling but don’t offer clichés or share stories to “help put their experiences in perspective.” After my son’s diagnosis, many people I talked to would get visibly upset when I explained the reality of his condition. I felt the need to be strong for them, and bottled up my own feelings of sadness. I started helping others deal with the trauma rather than relying on them to help me. Needless to say, I would eventually break down, usually to my husband but sometimes to a couple of my closest friends. Those friends never said “God doesn’t give you more than you can handle” or “My child was hospitalized for an allergic reaction once so I understand what you’re going through.” Some of the kindest and most well-meaning people said things that hurt me the deepest. Unless you have experience with the exact diagnosis your loved one is facing, less is definitely more. Second, offer help in concrete ways, but don’t push charity on someone. Learning to humbly accept charity is part of living with a serious medical condition. It can be very difficult for hard-working, self-sufficient people to accept money for hospital bills, frozen meals and the like. If you ask them how you can be of service, they will most likely refuse and say they’re fine. Learn to offer specific gifts. Is there an upcoming appointment? Offer childcare or gas money if they need to travel. If the child needs to be hospitalized, organize meals or offer to sit with the child for a bit so Mom and Dad can take a break. See if there are routine medical supplies not covered by insurance that you can help purchase on a regular basis, or help them set up a wish list online for these items. If they need a major medical item or home renovations, offer to organize a fundraiser. However, if they say no, respect that. Let them know you’re willing to help in any capacity. Keep offering and eventually they may ask or take you up on your offer. But don’t offer if you’re not willing to step up. If you say you’ll organize a beef and beer, you’d better damn well hold up your end of the bargain. Flaking out will make it that much harder for the family to ask for help in the future. Understand that even after the shock of the diagnosis goes away and the family settles into their new normal, there will be tough times. Your friend may seem fine, and things may look great on the outside, but the hardship of the day-to-day is there. Your friend probably doesn’t want to be considered a saint or someone who is “doing it all”. He or she is probably still struggling in many ways. This is where continued listening is so important. It is an ongoing juggling act to parent a  child with a disability. Things never stay the same for long. Never assume your friend has it together. Check in occasionally with a judgment-free ear. You might notice the strain of the diagnosis taking its toll on your loved one’s marriage. Learning to care for oneself, or a child with complex medical needs can suck up all your time. It is very easy to put all your time and energy into the diagnosis so that your spouse gets completely neglected or only viewed as a fellow caretaker. Friends, you can help by offering to babysit so Mom and Dad can get a night out, offer transportation if driving is difficult, maybe childcare, or if that’s not possible, surprise them with a gift card for a restaurant and some cash so they can find medically suitable help and make time for their relationship. If the family is religious, pray with them. (And if they’re not and you are, you can still pray, but understand they might not feel as grateful for your prayers as you’d like them to.) Religious belief can offer comfort to some families, but others may go through a spiritual struggle when faced with a serious medical diagnosis. Offer support, but understand it’s probably not an appropriate time to evangelize. Every family faced with a life-changing medical diagnosis needs a supportive community. By putting the family’s needs first and your own feelings second, you will go a long way in assisting them on their journey.

Kelly Mantoan

I Am Not Exceptional for Parenting a Child With a Disability

A few years back, I decided to open up a bit more about my life as a mom of a child with a disability and the role spinal muscular atrophy (SMA) played in our family’s life. I thought by sharing a bit more, I could show people that “if I can do this, anyone can.” I wanted to help people see they could joyfully parent any child they’d been blessed with. Unfortunately, I think most people take away that my husband and I are saints or exceptional people doing the impossible, instead of seeing we’re ordinary parents who’ve adapted to our circumstances. Someone recently said in front of me, regarding a pregnant friend, “So long as the baby is healthy.” And I thought, have you learned nothing from my family’s example? I should’ve blurted out, “And even if the baby isn’t ‘healthy,’ it’s not the end of the world.” But I didn’t. In the same conversation, when referring to an elderly friend this person said, “She requires people to do everything for her. What kind of life is that?” And I thought, that’s the joy filled life my boys live every day. But for some reason, despite knowing my family intimately, this person still held onto the belief that relying on others to care for you is a lousy way to live. This same person always tells me they don’t know how I do everything I do, as if in admiration, but thus far, all my example seems to have taught her I’m exceptional, unaware that disabled children and their families are as happy as any other. The realization of how people see my family makes me sad. I strongly believe in teaching by example. I try to avoid confrontation and arguments; hoping instead my example as a loving parent speaks for itself, but I see now that people aren’t getting the message. The message isn’t that I’m a saint, the message is that parenthood can be great, even when it’s sometimes scary, heartbreaking, uncomfortable and looks completely different from what I pictured. It means realizing that we, as parents and individuals, can do hard things. You could raise a child with a disability just as well as me. You could live a happy life if tomorrow if you wound up relying on a wheelchair or needed a round the clock caregiver. The life I’m living, and that of my children, isn’t exceptional because I’m somehow happily raising two disabled kids. It’s exceptional, or rare, simply because SMA only affects approximately one in 6,000 children. Raising a child with a disability requires the same skills as raising non-disabled children: patience, hard work, sacrifice and love. If you say you couldn’t do what I do, then I have to question if you can properly raise any child, pet or possibly houseplant. I love my sons with SMA no more or no less than my other children, and while I parent them differently, I am the same parent to them and their non-disabled siblings. I do special loving things for all my kids, and those gestures are no greater when I do them for my disabled children. If your child was disabled, you would take the same creative measures, and not because you wanted a pat on the back, but because it’s what you do for your child.  Stop praising my mothering because I don’t make parenting a child with a disability look awful. When you say, “You’re so amazing! I couldn’t do what you do!” I hear you putting me on a pedestal, rather than getting the message that you too can do hard things. You can realize you’re not in control of a situation and still thrive. Even if life is sometimes hard and messy, it will be OK, and more often than not, better than OK. I’m proof that we can’t conceive of all the ways we can be happy. There are millions of disabled people in this world who are proof that happiness doesn’t look how you think it should. That is why I write about SMA. Because if I can do this, anyone can.

Kelly Mantoan

When Your Child Points or Stares at a Person Who Uses a Wheelchair

It happened every time I took my family out in public: stares, open mouths, finger pointing, awkward conversations and personal questions. And then my fourth, and soon fifth children added their wheelchairs to the large family traveling circus and things got even worse. I’m hardly an expert in how to properly act around disabled people, but after consulting with several parents in similar circumstances, I thought I would offer some advice on what to do when your child points, stares or says something inappropriate about a disabled person in public and  how disabled people and their families prefer to be approached in public… if at all. 1. First and foremost, I can’t speak for all parents or people with disabilities. Everyone is different and responds to words and actions differently. For example, I read about one father who was angered every time someone complimented his son on how well he drove his wheelchair. That would never anger me as a parent, but I know Fulton and Teddy do not like the attention to their wheelchairs, or comments that make them different from other kids. I find not many comments upset me, except the time someone sat near Fulton  — who was in his wheelchair — and loudly asked “Can he walk?” Oh, and the other time someone said “He’ll be happier in heaven,” after saying he got SMA from vaccines. So please, if you follow some of my advice and someone still gets mad at you, realize what you’ve said or done has touched a nerve in a way you can’t understand. Don’t assume everyone will react the same way and try not to take it personally. 2. Imagine your child, younger than 6, is standing in front of a person in a wheelchair, mouth open, finger pointed and utters something like, “What is wrong with this scary looking man?” Perhaps you’d like to melt into the ground with your child and disappear (I’ve been on this end of the conversation, too). But as that is usually not an option, I recommend the following: Remind your child that staring and pointing at anyone is bad manners. Tell them nothing is “wrong” with this person; they just use a wheelchair (walker, scooter, leg braces, etc.) to help them get around. If the person in the chair is still there, you can smile at him/her and then ask your child if they’d like to say hi. Don’t force your child to do so. If they say hi, and the person says hi, great. If the child doesn’t say hi, you can still do so and then continue going about your business and let the other person do the same. Conversely, the worst thing to do would be to get angry at your child, shush them, and then hurry away from the person with a disability like they were a leper to be avoided at all costs. 3. If your child has questions, you can politely ask the person if your child may ask them. The other person may or may not have time to “spread awareness” at that point in time. If you’re not the type of person to strike up random conversations with people in public, you shouldn’t feel the need to do so with someone just because they’re disabled. In fact, please do not go out of your way to have your child “make friends” with the child or adult in the wheelchair. Fulton and Teddy want people to see them as equals. When you rush your child over to say hi, you’re actually making my sons stand out when all they want to do is blend in. My sons’ appearances in public are not your “teachable moments.” 4. Most people will forgive the innocent looks and questions of a child. And parents, you can set a great example for your child. Don’t ignoring the person with a disability who used a wheelchair by only talking to the parent or caregiver. This implies that you think the person in the chair cannot answer your questions. Please direct your questions or conversation to the person in the chair. Talk about what makes your child and the child with a disability (or adult) similar. “Look, you’re both wearing Marvel characters on your t-shirts!” Fulton and Teddy love when kids come up and just start talking about Star Wars, or Minecraft or other typical kid things. They immediately clam up when the conversation revolves around their chairs, their leg braces or anything else that sets them apart. Don’t talk about the person with a disability in negative terms, expressing only pity or sadness. Choose your words wisely. Disabled people aren’t really “sick” unless they’ve got a head cold. Other examples: “What is wrong with him?” “He must be so unhappy stuck in that chair.” “What is his life expectancy?” “I knew someone with your same disease. She died. It was awful.” “I’m so sorry. I will pray for you.” 5. Yes, even expressing the desire to pray for someone can be negative. I mean, how would you feel if you were walking down the street, minding your own business, whistling a tune, when some stranger stopped you, asked what was wrong with you and then shook their head sadly and said they’d pray for you? There you were, just enjoying you day, feeling fine when you were reminded that, “Oh yeah, everyone thinks my life is awful and can’t imagine being in my shoes.” Do you still feel like whistling? By all means, pray if you feel called, but understand many disabled people are happy and don’t need a miraculous healing to enjoy life any more than they already do. Do I want (and pray for) a cure for SMA? Yes. But do my boys and I sit around thinking about how much better life would be if they were cured. No. We’re too busy loving the life we have. 6. Keep your hands to yourself and make sure your child does the same. People instinctively want to touch Fulton on the head or hand. Can you imagine how it must feel to have strangers come out of the blue and touch you while you can’t get away? Fulton is not a lucky charm, relic or person in need of a comforting touch (and if he did need a comforting touch, it would be from me, his mother, and not you, random person with sad eyes.) If you would not come up and pat me, my husband, or say, my 12-year-old son on the head, please do not touch Fulton and Teddy. Imagine trying to run away from someone but they kept grabbing your shoulders and directing you towards them. That’s how it feels when a child grabs the joystick and tries to drive Fulton’s and Teddy’s chairs. Neither are strong enough to push a child’s hand away. So if you’re talking to someone in a powered chair or scooter, make sure your young child understands not to touch. Kids love power chairs — I get it, there’s buttons, lights, screens and joysticks and they go so fast. But they’re not toys, and children can get injured if they grab someone’s joystick and drive the chair into their own feet or legs. And make sure your child asks a person in a manual chair for permission before they start pushing them around. It’s really about using common sense and common courtesy, but I totally understand how in the heat of the moment, when your child points and blurts out something embarrassing, it’s easy to freeze and do something out of character. Tuck these suggestions away in your memory bank for when the inevitable happens so you can be prepared.