Kelly Simpson

@momuplife | contributor
I am a stay at home mom with a toddler who has Down syndrome. She is my rainbow baby, we lost our first daughter, unexpectedly during a hospitalization, when she was 4 1/2 years old. She had a rare genetic condition, an unbalanced translocation. We never thought we would have more children, but then, we did! We have had two children with two completely different genetic conditions, and we have been blessed beyond measure.
Kelly Simpson

Finding Grace as the Parent of a Child With a Disability

My 15 month old daughter introduced me to the Down syndrome community, but she was not my first child with a disability. My first daughter had a rare genetic condition and passed away when she was 4-and-a-half years old, unexpectedly, during a hospitalization. I am familiar with disabilities, albeit through two very different experiences. As a mom of a child with a disability, I am always prepared to fight insurance companies, medical professionals and even strangers in public. But with my first child, things were much different than they are with my second child. If there was any inkling of a negative tone from someone, I rode up on my white horse wielding my sword ready for battle. I would have taunting thoughts like, “ go ahead and say something, I dare you — wrong mama, wrong day.” It was intense. I was intense. I was a fierce advocate for my child. I was a force to be reckoned with — just ask the teachers at my daughter’s first IEP meeting! It was three hours long and I am pretty sure they all went out and had margaritas and talked about me afterwards. I researched, I listened, I asked questions, I pushed the envelope and I always went one step further than I thought was possible. There wasn’t a fight I would back down from, even if I was the underdog. And my track record for winning those fights was pretty darned good. I don’t regret any of that. However, I was definitely not schooled in the art of balance, and my readiness for fighting extended into almost every area of my life. I was always on. I was like a warrior who sleeps with one eye open and a dagger under her pillow. It was exhausting. Then my daughter died. It had nothing to do with how hard I fought, how much I advocated or how fiercely I loved her. I believe it was part of God’s plan — he did not consult me on this plan, but I hear that’s just how it goes. After she died, I did not know how to lay down my sword and put my white horse out to pasture. Without her, I was lost. Everything I did, I did as a shell of a person, but with a white hot fire in my heart. Nothing was right. I had excuses for, reasons for, and issues with everything. I was a ball of negative, angsty energy and I was heartbroken. It was a bad combination. From the day she was born I ate, drank, slept and breathed as an advocate for my daughter. I was always poised to put my foot down, to protect her interests and her safety, and I let the fight consume me. That’s important to reiterate for those of you in a similar boat — I let it consume me. I fought when there wasn’t anything to fight about. Sometimes without realizing it, I even started a fight. It wasn’t intentional, it just became a part of who I was and at times I lost perspective. She was my only child and she was a medically complex, disabled child. There are no rule books for that kind of parenting and I knew no other parents in similar situations. I had no way of knowing that fighting for her could turn into perpetual fighting that would stay with me even after she was gone. As parents, I think we can all get our hackles up for our children if the need arises. That’s reasonable. But as parents of disabled children or children with medical complexities, it can be a frequent occurrence. We must always be ready to fight, absolutely. The challenge is finding the balance; knowing not only which battles to tackle and which ones to let go, but almost more importantly, knowing what isn’t even a battle to begin with. And finding grace along the way. Grace. What a simple, pleasant word, right? But the power this word has given me is exponential. It wasn’t until after my second child was born that I found grace. That power brought relief. That relief showed me clarity. That clarity brought understanding. That understanding brought insight. That insight paved the way for reflection. That reflection shaped my resolve. And that resolve changed me. It reduced my anxiety, my insecurities and my fear. Now that I think about it, perhaps I didn’t find grace at all. Perhaps it found me. Either way, I am so glad to have it in my life. These days, instead of feeling the need to fight at every interval, I take a moment and extend grace. I extend grace to myself and to others. I don’t see every comment, every opinion, every look in our direction, every small interaction as a personal attack like I did before. I have started to learn not only to pick my battles, but to recognize the impostors. And that saves a heck of a lot of precious energy. Not every person staring at us in the park is looking to make a negative impact. Sure, maybe they are staring because we are different, and maybe we all hate to be stared at, but it doesn’t mean they are doing it with bad intentions. It certainly doesn’t require me to get my hackles up and mean mug them. If I extend grace, I open up communication. I provide an opportunity for a positive and meaningful interaction, and that’s a lot better than projecting my insecurities onto them. Grace is generous. Grace is thoughtful. Grace is deliberate. Grace is all the things I was missing when I was constantly in battle mode. And Grace is my responsibility, I can’t pawn that one off on someone else. If I had given myself grace to feel the heartbreak from losing my child, instead of pressing myself to find purpose and make an impact, I might not have left four jobs in my wake in a one-and-a-half year time period! If I had given grace to people who didn’t know what to say or how to say it, instead of shutting down and tuning out, I might have helped to open a few hearts. Extending grace to myself means letting go of expectations and resisting the fight and flight urge (I have always been the type of person who runs away while throwing things at the problem behind me). It gives me the opportunity to comprehend and reflect on what is before me so I can experience more serenity in my life. Extending grace to others means giving them the benefit of the doubt. It gives them the opportunity to be open and available and extend themselves to make a meaningful connection. Finding grace has helped me find the balance. Finding grace doesn’t mean I am not ready to defend my child when needed, it just means I am not stuck in a perpetual battle state of mind. I like where things are going now that I found grace. If I could spread grace to others like seeds on the wind, now that would be something wonderful.

Kelly Simpson

Finding Grace as the Parent of a Child With a Disability

My 15 month old daughter introduced me to the Down syndrome community, but she was not my first child with a disability. My first daughter had a rare genetic condition and passed away when she was 4-and-a-half years old, unexpectedly, during a hospitalization. I am familiar with disabilities, albeit through two very different experiences. As a mom of a child with a disability, I am always prepared to fight insurance companies, medical professionals and even strangers in public. But with my first child, things were much different than they are with my second child. If there was any inkling of a negative tone from someone, I rode up on my white horse wielding my sword ready for battle. I would have taunting thoughts like, “ go ahead and say something, I dare you — wrong mama, wrong day.” It was intense. I was intense. I was a fierce advocate for my child. I was a force to be reckoned with — just ask the teachers at my daughter’s first IEP meeting! It was three hours long and I am pretty sure they all went out and had margaritas and talked about me afterwards. I researched, I listened, I asked questions, I pushed the envelope and I always went one step further than I thought was possible. There wasn’t a fight I would back down from, even if I was the underdog. And my track record for winning those fights was pretty darned good. I don’t regret any of that. However, I was definitely not schooled in the art of balance, and my readiness for fighting extended into almost every area of my life. I was always on. I was like a warrior who sleeps with one eye open and a dagger under her pillow. It was exhausting. Then my daughter died. It had nothing to do with how hard I fought, how much I advocated or how fiercely I loved her. I believe it was part of God’s plan — he did not consult me on this plan, but I hear that’s just how it goes. After she died, I did not know how to lay down my sword and put my white horse out to pasture. Without her, I was lost. Everything I did, I did as a shell of a person, but with a white hot fire in my heart. Nothing was right. I had excuses for, reasons for, and issues with everything. I was a ball of negative, angsty energy and I was heartbroken. It was a bad combination. From the day she was born I ate, drank, slept and breathed as an advocate for my daughter. I was always poised to put my foot down, to protect her interests and her safety, and I let the fight consume me. That’s important to reiterate for those of you in a similar boat — I let it consume me. I fought when there wasn’t anything to fight about. Sometimes without realizing it, I even started a fight. It wasn’t intentional, it just became a part of who I was and at times I lost perspective. She was my only child and she was a medically complex, disabled child. There are no rule books for that kind of parenting and I knew no other parents in similar situations. I had no way of knowing that fighting for her could turn into perpetual fighting that would stay with me even after she was gone. As parents, I think we can all get our hackles up for our children if the need arises. That’s reasonable. But as parents of disabled children or children with medical complexities, it can be a frequent occurrence. We must always be ready to fight, absolutely. The challenge is finding the balance; knowing not only which battles to tackle and which ones to let go, but almost more importantly, knowing what isn’t even a battle to begin with. And finding grace along the way. Grace. What a simple, pleasant word, right? But the power this word has given me is exponential. It wasn’t until after my second child was born that I found grace. That power brought relief. That relief showed me clarity. That clarity brought understanding. That understanding brought insight. That insight paved the way for reflection. That reflection shaped my resolve. And that resolve changed me. It reduced my anxiety, my insecurities and my fear. Now that I think about it, perhaps I didn’t find grace at all. Perhaps it found me. Either way, I am so glad to have it in my life. These days, instead of feeling the need to fight at every interval, I take a moment and extend grace. I extend grace to myself and to others. I don’t see every comment, every opinion, every look in our direction, every small interaction as a personal attack like I did before. I have started to learn not only to pick my battles, but to recognize the impostors. And that saves a heck of a lot of precious energy. Not every person staring at us in the park is looking to make a negative impact. Sure, maybe they are staring because we are different, and maybe we all hate to be stared at, but it doesn’t mean they are doing it with bad intentions. It certainly doesn’t require me to get my hackles up and mean mug them. If I extend grace, I open up communication. I provide an opportunity for a positive and meaningful interaction, and that’s a lot better than projecting my insecurities onto them. Grace is generous. Grace is thoughtful. Grace is deliberate. Grace is all the things I was missing when I was constantly in battle mode. And Grace is my responsibility, I can’t pawn that one off on someone else. If I had given myself grace to feel the heartbreak from losing my child, instead of pressing myself to find purpose and make an impact, I might not have left four jobs in my wake in a one-and-a-half year time period! If I had given grace to people who didn’t know what to say or how to say it, instead of shutting down and tuning out, I might have helped to open a few hearts. Extending grace to myself means letting go of expectations and resisting the fight and flight urge (I have always been the type of person who runs away while throwing things at the problem behind me). It gives me the opportunity to comprehend and reflect on what is before me so I can experience more serenity in my life. Extending grace to others means giving them the benefit of the doubt. It gives them the opportunity to be open and available and extend themselves to make a meaningful connection. Finding grace has helped me find the balance. Finding grace doesn’t mean I am not ready to defend my child when needed, it just means I am not stuck in a perpetual battle state of mind. I like where things are going now that I found grace. If I could spread grace to others like seeds on the wind, now that would be something wonderful.

Kelly Simpson

COVID-19 Isolation Is Difficult for Parents of Kids With Disabilities

Isolation. Let’s face it. It’s nothing new for those of us in the parenting children with disabilities community. Typically we experience isolation because of our own insecurities, feelings of intimidation and lack of confidence; and sometimes it’s because others have insecurities, feelings of intimidation and lack of confidence. But, there is also a third reason — some people, and there are a bit more than I care to admit, are self-absorbed and insensitive and don’t know or care about our families’ existence. However, COVID-19 did something pretty interesting. For people all over the world, it leveled out that isolation playing field. The majority of us were all experiencing some similar form of isolation, our typical daily interactions abruptly changed — for all of us at the same time. Random folks on FB were hosting Zoom mixers and online chat rooms; family dinners, cocktail hours, girls nights, playgroups, dance classes, coffee breaks — were all being done through virtual settings. People were feeling so isolated and uncertain that they reached out to others in newly creative ways. It was actually kind of fun and exciting— drive by birthday parties, ”sneaky” parking lot chat meetings, snail mail surprises! It was like one humongous community of people craving social interactions, acceptance and reassurance among the uncertainty. Not unlike what many of us parents of children with disabilities experience on the regular. There was an interesting ease in feeling comfort and belonging with others, and a noticeable expansion of community during this quarantine. Though it was a time of challenge, it was nice to feel so connected. But, as the world begins to open up, I am feeling that newfound community shrinking quickly. More and more folks are starting to make different risk/benefit decisions than we, as families in the disability community, are making. And, as they loosen their ties to isolation, ours are stuck where they are. There are now less virtual events and more in-person events. And though it makes sense that people need these interactions, and I don’t begrudge them at all, it is also painful as a parent of a child with a disability. With COVID-19 numbers on the rise again, our family stays firm in our plans to continue social distancing as much as possible. Others are starting to gather, laugh and have fun together —and we can’t join them, we aren’t ready. Our hearts break seeing our daughter, longingly watching the kids playing in the neighborhood and at the playground — all from a considerable distance. We know how important social interactions are for her development and we are trying to find ways to support it while keeping risks low. It’s hard though. Our pool of “safe people” to interact with is small, as most folks have way less social restrictions than we do. So, we stay fairly isolated, while others carry on with life. That humongous, “we are all in this together” communal feeling is fading fast. No one is to blame, it is just part of the seasons and journeys of life. I understand that. But, I can’t help feeling a little disappointed about it. I remind myself that we make different choices, because that is what works for our family right now. Less exposure means less risk. This is a new virus and there just is not enough data on how to support and manage symptoms effectively, especially for those with higher risk factors. Additionally, if we get sick and hospitalized, who will take care of our child with a disability and volunteer to be exposed to the virus while doing it? I am sure someone would, but we don’t want to have to find out. As parents of children in the disability community, finding the balance, in general, is sometimes hard. Oh, let’s be honest — finding the balance for any of us, as parents, is hard! But, in this current environment, we are really struggling and feeling more left behind than ever; because we had that fleeting moment of “we are all in this together” community and now we do not. It is even more imperative to extend grace to each other now — all of us. It’s important to recognize that not everyone makes the same choices in their risk/benefit balance, because not everyone has the same factors at play. And, I am cool with that as long as the choices of others are not putting another person or family in unknown risk (i.e. wear a mask at a public space). It’s also important for us, as parents of children in the disability community, to continue to reach out past ourselves for meaningful connections and interactions. It’s going to take effort and creativity! And, I hope others recognize that some of us have a few extra turns and stop lights in our “Coming Out of COVID-19 Quarantine” paths; I hope they decide to circle back every now and again to offer a little company.  

Kelly Simpson

When People Don't Know How I Handle Having a Child With a Disability

Perception is reality. You have heard that phrase before, yeah? Years ago, I learned the phrase as part of a training course about communication with colleagues, clients and staff. It related to the fact that you may say something to someone and that person perceives your words how he/she wants, not necessarily how you meant them. When working in a service culture, we were instructed that “perception is reality”— meaning it made no difference what we meant or intended by our words; rather, the interpretation of the person hearing them took precedence. For years, I rolled with that theory. I recognized that, in a culture centered on service, one sometimes had to bend to those she served. So, I bent. And here I am today, looking at this idea in a completely different way. I am on the other side. I am the one who is perceiving the intentions of others. I am part of the disability community — I am raising a child with a disability. We often hear people say things to us related to our children — things that are clearly negative, some that are clearly positive and some things that lurk in the gray area, that area where perception becomes reality for some of us. I do not want to fuel that narrative as a parent of a disabled child. I do not want to project my insecurities on another person’s intentions, creating a skewed reality for all of us. When someone says, “wow, I don’t know how you do it every day. I don’t think I could do what you do,” the hackles go up for a good number of parents of children in the disability community. It’s been a pretty hot topic in the parenting community. Our knee-jerk reaction, our perception, is that this person is saying we are martyrs, our life is crap and if it were them, they would throw in the towel. We think the comment is negative and diminishes the worth of our children. I believe this perception, by us as parents, not only threatens our own well-being by causing us hurt, anxiety and disappointment, it also threatens to alienate us from those around us who are different. It increases the barriers to building meaningful relationships and reduces the opportunity for inclusive experiences. People do not like being told what they mean when they say something to you. Can we take a step back and let go of our preconceived notions, built from our own insecurities, past negative experiences, and the history of the degradation of disabled people? Can we try to listen and receive that comment as the commentator intended? Further still, if we are unclear of the intention, can we ask for clarity and honestly, and openly welcome it when it comes? This takes a huge amount of vulnerability on our part. I get that. It also takes effort, diligence and a desire to shift the narrative. It gives us the opportunity not only to be more authentic ourselves, but also to accept the authenticity of others. As parents of disabled children, many of us are trying to get others to understand what it is like in our shoes. But how often do we do the same? It’s possible that the person who said, “I couldn’t do what you do” is saying it in an impressed way, as a nod, a fist bump — recognizing a person who is living life well. It’s possible that person can barely handle the life he is living, without the additional challenges he sees in yours. He said it in awe, but it’s really got nothing to do with you or your child. He may see your life and feel unworthy himself. It’s possible that person passed on being the parent of a child with a disability because she didn’t think she could handle it — and perhaps she was correct. No one will ever know unless she gets the chance to live that life herself. As much as we parents in the disability community like to say, “I’m just being a parent, I am not doing anything different than you would do in my situation,” I don’t believe that’s the truth. Sure, we want it to be the truth. But it’s not. We can’t all do the same things. We don’t all have the same strengths and weaknesses. We don’t all want to commit ourselves to something the same way as another does. We don’t all have the same foundation on which to build our lives. We don’t all have the same ideas, experiences and understandings. All of that plays into what we can do and what we cannot do. All of it plays into what we think we can do and what we think we cannot do. And none of it makes any one of us less than another. Read that again. And one more time so it sinks in fully. Acknowledging a job well done to another parent should not automatically be perceived as negative. Sure, sometimes people are being jerks, I get that. But your average person is not. How do I know? Because I have been that person and I still am. I have said, “How did you survive raising three kids all in diapers at once? I could never have done it.” I meant no disrespect toward her or her life. I was truly in awe of her abilities. I had no confidence in my own ability to do the same. I look at mothers in the grocery store with my mouth agape and my eyes wide as saucers trying to comprehend how they do it. I see women who look awesome in their yoga pants, are wearing a nursing baby, feeding a banana to a toddler in the cart and asking their 5-year-old to put carrots in her “future shopper” cart. No one is screaming or melting down. I think to myself, “I. Could. Not. Do. That.” Meanwhile, I stroll through the store, having left my list at home, leftover mascara darkening the circles under my eyes, trying to convince my kid to sit in the cart all with sweat streaming down my back and tears threatening to escape my eyes. Here’s the thing, my journey is mine alone. Meant for me. Suited to me. It may take the breath away from someone else to think of walking along the same journey as me — but that’s OK, it’s not meant for them. I feel the same way about their journey. I admire them for living it, but I sure as heck don’t want it myself. And that’s OK. So, if you want to look at me and my life with awe, go right ahead! I am doing the same when I look at yours. I assure you, this path is full of some amazing moments, but there are plenty of other moments where I don’t have my shit together. And I am guessing you can say the same.

Kelly Simpson

American Girl Does Not Need a Doll With Down Syndrome

There is some current chatter about American Girl in the Down syndrome community. Recently, they had a catalog ad where one of their beautiful models was a child with Down syndrome. However, American Girl doesn’t make dolls that look like they have Down syndrome. And apparently, that’s kind of their thing — to make dolls that girls feel look like them. That sparked conversation. Many people in the community would like to see American Girl make dolls that represent their children with Down syndrome. But American Girl has no plans to do that, per the news articles circulating on the internet. I am the parent of a child with Down syndrome, and I don’t expect American Girl to create a doll with Down syndrome. If they did — great, excellent, good for them. Maybe we would buy one, maybe we wouldn’t, I don’t really know. But I don’t expect them to make one. Nor do I feel that my daughter is not represented without one. In fact, I think it’s way more important that their catalog models include children with Down syndrome. If they didn’t, then I would feel my child is not represented. October was National Down Syndrome Awareness Month, and during the month people share all kinds of great facts about Down syndrome. One of which is something to this effect, “There are physical markers that can be present for people with Down syndrome — almond-shaped eyes, short stature, sandal toes etc., but people with Down syndrome most resemble their family members.” Per the NDSS (National Down Syndrome Society), “A few of the common physical traits of Down syndrome are: low muscle tone, small stature, an upward slant to the eyes, and a single deep crease across the center of the palm. Every person with Down syndrome is a unique individual and may possess these characteristics to different degrees or not at all.” These are the reasons I don’t expect American Girl to create a doll with Down syndrome features. My daughter looks most like us — her family. She is more alike than different. She can see herself in a doll that has blue eyes, long wavy brown hair and a pale complexion. Furthermore, even if they did make a doll that was supposed to represent a child with Down syndrome, so my child could see herself in the doll, how would they get it right? She doesn’t have all the features associated with Down syndrome. Which ones would they include? Would she even see herself in those they included? Would she recognize it as a miniature image of herself? I think it’s reasonable to represent children with specific features like eye color, hair color, skin color etc., so they can share their likeness with their dolls. I think it’s also important to take it a step further and add other things like glasses, wheelchairs, hearing aids etc. But, to try to make dolls with the features of Down syndrome? If they did it, fine. But, I am not angry with them if they don’t. I do not think creating a doll that has the genetic features of Down syndrome is as simple as creating a doll with blond hair or olive skin. They may not get it right — because as we know, not all people with Down syndrome have all the features and they mostly resemble their family members. That’s a tall order, even if they bring in special consultants to try to get it right. Regardless of whether or not our daughter has a doll with features that are supposed to represent Down syndrome, she will be taught to see the reciprocal beauty in herself and her dolls — we will teach her. She will see real children with Down syndrome in the ads, and perhaps she will recognize them, like the one American Girl currently has in their ad. But more importantly, we will share with her that she is both beautifully unique and more alike than different.

Community Voices

Words Don't Have The Power That Intentions Have

Remember that little rhyme we used to

say as kids, when our feelings were hurt, “sticks and stones will

break my bones, but words will never hurt me”?

There is something to that little

lesson that I am reminded about now, in my adult years. I recently observed a conversation where several people felt one way about a word–that it shouldn’t be used because it had a history that was viewed as derogatory in nature. And another group felt another way about it–that their use of the word was positive and meaningful to them and had nothing to do with a derogatory history experienced by others. The conversation got heated, ugly even. Respect and consideration flew out the window.

Words, as

powerful as they may be, should not have power over us. To me, words

are nothing without intentions to support them. Intentions can exist

without words—the smile of a person walking by, the holding of a

door as you walk into a building, the hug of a child—they convey a

depth of truth that words alone cannot.

We live in an environment where words

have been given such a heightened power over people—they make us

feel insignificant, belittled and betrayed. And, anymore, that can

happen at any turn of conversation. I don’t want to feel this way, I

don’t want words to have power over me and my feelings. I want my

words to combine with my intentions to convey my truth. Never do I

want those words to be interpreted in a way different from my

intentions.

But, that kind of thing happens all the time. Doesn’t it? Someone takes your words and projects their feelings about them into your intentions. And, bam! The context, your point, the whole conversation goes sideways. That mucks up a conversation with little hope of recovery.

I am part of a community where some

words, like the R-word, have been stricken from the vocabulary. The

problem is that people have replaced that word with other words to

convey the same intentions—negative, derogatory, dehumanizing

intentions. Mean people with bad intentions will always find a way to

push their negative agenda across.

The R-word is in my wheelhouse, so I will use it as an example. That word has a history, like many

other words related to groups of people and their identities. That

history has driven not only the definition of the R-word, but it also

gives a powerful life to the word by leaving an indelible impression

of intention. So that, any time the word is used, regardless of the

intention of the user, the communal understanding is negative,

derogatory, dehumanizing.

Now, to be fair, that is pretty much an accurate understanding of intention when the R-word is used. People

don’t usually use it as a cheerful praise and compliment.

But, what if they did? Stay with me here.

What if someone took an old word, like

the R-word, and built a whole new definition of that word, and used

it with good intentions to drive that positive definition home?

Would we be hurt? Would we feel

dehumanized when we heard it? Would we tell them to stop using the

word? Would we project our feelings of the historically painful

impact of the word on the new, positive impact they are trying to

create?

Probably. That’s pretty much how that conversation I mentioned early went down.

I think my knee jerk reaction would

be to cringe and feel a pang of pain. But, I would make an effort to

recognize their intention to change the rhetoric and I would remind

myself that words alone have no power over me. I would also recognize

that the change does not alter the painful history of the word, but

it could create a positive future.

The world is complicated. Words, for

me, are still not “sticks and stones that break my bones”. I

honor the intentions of people over the words people use more and

more every day. Because, I recognize we all come from varied and

complex backgrounds. Those backgrounds are full of baggage and

history that shape the definitions of the words in our vocabulary. I

don’t want to hinder my opportunity for meaningful

communication by projecting my feelings about a word as the intentions of another.

Let’s be real here. We can’t know the history and abuse of every word in all circles of life. We just can’t, even if we want to, even if we try our best to be informed and sensitive. We have to have more realistic expectations of each other, don’t we? I mean, the world as a whole has such unreasonable expectations of us, let’s cut each other some slack. I plan to, anyway.

What if we all did that? Would there be

less contention? Probably. Wouldn’t that be a good thing? Indeed.

 

Kelly Simpson

Encouraging Children With Down Syndrome

To our beautiful daughter, We prayed for you. You are the most amazing gift we have ever received. You are beautiful and bold. You are funny and smart. You are loving and gentle. We are in awe of you — of your strength, your courage, your tenacity and your grit. You are the stuff dreams are made of. You are the calm and the storm, depending on the moment — qualities that will serve you well as you journey through life. You were born because you had a purpose to fulfill; because you have a message to share; because you are worthy of all this world has to offer; because you can offer a hell of a lot to this world. You are meant to be exactly who you are; every fiber of your being is woven with threads of love, joy and persistence. You are made in the image of life — humanity, which you will find comes in many different forms. You will do great things. Even the fluttering wings of the butterfly can put change in motion. You have power, you have grace and you have love. We love you, with every beat of our hearts, with the very essence of our beings. But not everyone will love you, or see your beauty or your capabilities. That is reality, and it’s OK. There will be people who put your strength and courage to the test. Hang on, steady yourself with the calm, do not let them pull you down. If they succeed, because sometimes they will, raise the storm, rise up and move through without looking back. There will be people who degrade you, misuse you, and pity you because they think they determine your worth. They do not. You were fearfully and wonderfully made; I believe only God can determine your worth. Be confident that you are worthy and that is why God sent you. There will be people who take from you, withhold from you and refuse to accept you. They don’t understand the message you have to share because they are missing a crucial piece of information. Information you have — experience living your life. You can learn from them though — recognize that their treatment of you is hurtful and vow that you will never treat others that way. There will be people who underestimate you. That’s too bad for them; their projections are not true reflections of  your future successes. It’s OK to smile with pride when you blow them away with your awesomeness. There will be people who are cruel and hateful and want nothing good for you. These people can sometimes be the most difficult to overcome, because it’s so hard to accept that humanity could be so cold and horrid. Love and goodness flow through you, though. Remember that. Remember that though there is ugliness in the world, there is beauty too. You are one of the little known gifts scattered about humanity — shine your light without reservations. The best thing you can do, more important than anything we can even do as your parents, is to believe in yourself. Believe in your worth, your competence, your goodness. Believe in all the things we believe about you. Affirm your worth daily. Hold your head up high. You are loved. You are more than enough. No one can change that. Love, Your devoted Mother and Father

Kelly Simpson

My Child's Disability Is Not What Will Hold Her Back in Life

My child’s disability is not what will hold her back in this life. You are. Let me clarify. You are, if you are a person who chooses to stay closed minded and believe that my child’s disability will hold her back in life. The reality is that her disability will present challenges that others may not have. True indeed. But, it’s my job, our job as a family and her job as an individual, to push through and figure out how to make things work for her. That means we have to be more creative, more assertive and more tenacious. It also means the people around her have to participate as well. They have to be more open minded to see the creativity that we use to tackle challenges and break through barriers. They have to recognize that it’s not black and white — just because a person has no legs does not mean he cannot play sports, he just has to get creative about it. There is a lot of gray area. Within that gray area there are ways in which my child and others like her will meet milestones, accomplish tasks, achieve goals and become more independent. If my kid cannot vocalize her words, it does not mean she cannot effectively communicate. It means we help support her with other forms of communication, like signs, pictures, a tablet. And, it’s your job to be open to that type of communication. If you are not open, you are holding her back. If my kid cannot hear, it does not mean she cannot understand. It means that we will put the people and resources in place so that she can still be given information. It’s your job to recognize those resources and utilize them too. If not, you are holding her back. If my kid cannot use her hands to grip a paint brush, it does not mean she cannot use art as a creative outlet. It means that we help her to enjoy other mediums, like finger paints, stickers, clay; and perhaps we continue to work on the goal to hold a paintbrush if appropriate. It’s your job to accept that these are the ways in which she can express her creativity and support her work towards her ultimate goal. If you will not, you are holding her back. If my child does not have as high an IQ as another, it does not mean she is incapable of learning. It means we will need to put additional learning supports in place with an IEP, an aid, a tutor, and any other means available. It’s your job to work with those learning supports as well. If you refuse, you are holding her back. If my child does not walk, it does not mean she cannot enjoy time on the playground. It means we have to help ensure that the playground is ADA friendly and teach her how to use the equipment based on her physical attributes. If you cannot see that, then you are holding her back. If my child has a disability that makes her talk, walk, learn and communicate differently, it does not mean she cannot have meaningful social interactions and develop relationships. Nor does it mean she doesn’t want or need them. It means we have to seek out individuals who are open to interactions, regardless of how different they may be. If you are not open, you are holding her back. In this life, there is an expectation that each one of us participate in lifting up those around us instead of tearing them down. There is an expectation that each one of us participate in furthering the successes of those around us. This is how humanity works. Do not be mistaken, doing these things does not impede our quality of life, it enriches it. We all have things to give and things to gain from each other, regardless of medical diagnoses. It takes an open mind to see it, believe it and live it. So, the next time you go to comment about how a person with XYZ disability cannot do this or that — think again. It’s that kind of attitude that makes it difficult for people with disabilities to tackle challenges. Be better. Be bigger. Be kind. Be patient. Be willing. Be human. Be the person you would want someone to be towards you if you were disabled. Other stories from Kelly Simpson you may enjoy: The Problem With Expecting Person-First Language When Talking About Disability To the Mamas Who Feel Invisible and Alone

Kelly Simpson

My Child's Disability Is Not What Will Hold Her Back in Life

My child’s disability is not what will hold her back in this life. You are. Let me clarify. You are, if you are a person who chooses to stay closed minded and believe that my child’s disability will hold her back in life. The reality is that her disability will present challenges that others may not have. True indeed. But, it’s my job, our job as a family and her job as an individual, to push through and figure out how to make things work for her. That means we have to be more creative, more assertive and more tenacious. It also means the people around her have to participate as well. They have to be more open minded to see the creativity that we use to tackle challenges and break through barriers. They have to recognize that it’s not black and white — just because a person has no legs does not mean he cannot play sports, he just has to get creative about it. There is a lot of gray area. Within that gray area there are ways in which my child and others like her will meet milestones, accomplish tasks, achieve goals and become more independent. If my kid cannot vocalize her words, it does not mean she cannot effectively communicate. It means we help support her with other forms of communication, like signs, pictures, a tablet. And, it’s your job to be open to that type of communication. If you are not open, you are holding her back. If my kid cannot hear, it does not mean she cannot understand. It means that we will put the people and resources in place so that she can still be given information. It’s your job to recognize those resources and utilize them too. If not, you are holding her back. If my kid cannot use her hands to grip a paint brush, it does not mean she cannot use art as a creative outlet. It means that we help her to enjoy other mediums, like finger paints, stickers, clay; and perhaps we continue to work on the goal to hold a paintbrush if appropriate. It’s your job to accept that these are the ways in which she can express her creativity and support her work towards her ultimate goal. If you will not, you are holding her back. If my child does not have as high an IQ as another, it does not mean she is incapable of learning. It means we will need to put additional learning supports in place with an IEP, an aid, a tutor, and any other means available. It’s your job to work with those learning supports as well. If you refuse, you are holding her back. If my child does not walk, it does not mean she cannot enjoy time on the playground. It means we have to help ensure that the playground is ADA friendly and teach her how to use the equipment based on her physical attributes. If you cannot see that, then you are holding her back. If my child has a disability that makes her talk, walk, learn and communicate differently, it does not mean she cannot have meaningful social interactions and develop relationships. Nor does it mean she doesn’t want or need them. It means we have to seek out individuals who are open to interactions, regardless of how different they may be. If you are not open, you are holding her back. In this life, there is an expectation that each one of us participate in lifting up those around us instead of tearing them down. There is an expectation that each one of us participate in furthering the successes of those around us. This is how humanity works. Do not be mistaken, doing these things does not impede our quality of life, it enriches it. We all have things to give and things to gain from each other, regardless of medical diagnoses. It takes an open mind to see it, believe it and live it. So, the next time you go to comment about how a person with XYZ disability cannot do this or that — think again. It’s that kind of attitude that makes it difficult for people with disabilities to tackle challenges. Be better. Be bigger. Be kind. Be patient. Be willing. Be human. Be the person you would want someone to be towards you if you were disabled. Other stories from Kelly Simpson you may enjoy: The Problem With Expecting Person-First Language When Talking About Disability To the Mamas Who Feel Invisible and Alone

Kelly Simpson

My Child's Disability Is Not What Will Hold Her Back in Life

My child’s disability is not what will hold her back in this life. You are. Let me clarify. You are, if you are a person who chooses to stay closed minded and believe that my child’s disability will hold her back in life. The reality is that her disability will present challenges that others may not have. True indeed. But, it’s my job, our job as a family and her job as an individual, to push through and figure out how to make things work for her. That means we have to be more creative, more assertive and more tenacious. It also means the people around her have to participate as well. They have to be more open minded to see the creativity that we use to tackle challenges and break through barriers. They have to recognize that it’s not black and white — just because a person has no legs does not mean he cannot play sports, he just has to get creative about it. There is a lot of gray area. Within that gray area there are ways in which my child and others like her will meet milestones, accomplish tasks, achieve goals and become more independent. If my kid cannot vocalize her words, it does not mean she cannot effectively communicate. It means we help support her with other forms of communication, like signs, pictures, a tablet. And, it’s your job to be open to that type of communication. If you are not open, you are holding her back. If my kid cannot hear, it does not mean she cannot understand. It means that we will put the people and resources in place so that she can still be given information. It’s your job to recognize those resources and utilize them too. If not, you are holding her back. If my kid cannot use her hands to grip a paint brush, it does not mean she cannot use art as a creative outlet. It means that we help her to enjoy other mediums, like finger paints, stickers, clay; and perhaps we continue to work on the goal to hold a paintbrush if appropriate. It’s your job to accept that these are the ways in which she can express her creativity and support her work towards her ultimate goal. If you will not, you are holding her back. If my child does not have as high an IQ as another, it does not mean she is incapable of learning. It means we will need to put additional learning supports in place with an IEP, an aid, a tutor, and any other means available. It’s your job to work with those learning supports as well. If you refuse, you are holding her back. If my child does not walk, it does not mean she cannot enjoy time on the playground. It means we have to help ensure that the playground is ADA friendly and teach her how to use the equipment based on her physical attributes. If you cannot see that, then you are holding her back. If my child has a disability that makes her talk, walk, learn and communicate differently, it does not mean she cannot have meaningful social interactions and develop relationships. Nor does it mean she doesn’t want or need them. It means we have to seek out individuals who are open to interactions, regardless of how different they may be. If you are not open, you are holding her back. In this life, there is an expectation that each one of us participate in lifting up those around us instead of tearing them down. There is an expectation that each one of us participate in furthering the successes of those around us. This is how humanity works. Do not be mistaken, doing these things does not impede our quality of life, it enriches it. We all have things to give and things to gain from each other, regardless of medical diagnoses. It takes an open mind to see it, believe it and live it. So, the next time you go to comment about how a person with XYZ disability cannot do this or that — think again. It’s that kind of attitude that makes it difficult for people with disabilities to tackle challenges. Be better. Be bigger. Be kind. Be patient. Be willing. Be human. Be the person you would want someone to be towards you if you were disabled. Other stories from Kelly Simpson you may enjoy: The Problem With Expecting Person-First Language When Talking About Disability To the Mamas Who Feel Invisible and Alone