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To the Teachers of the Little Ones With Special Needs

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I don’t know your background. I don’t know why you chose this profession. I don’t know where your inner strength comes from or what keeps you going. I don’t know if you will keep doing this or if you will move on to other jobs. I don’t know how much of your day you take home with you at night.

But this is what I do know:

I know you care for our children as if they were your own. I know you celebrate every single little success they have because you know just how hard and long they had to work to achieve it. I know you watch them develop, and your hopes for them go far beyond your classroom.

I know you hear the same news stories I do. I know you cringe when you hear of a teacher who hurt a nonverbal child. I know your heart aches that you have to work so hard to earn parents’ trust, and you wish they knew that for every one abusive teacher of special needs children there are a hundred more who would do anything and everything to protect our children. And because you are that teacher who would do anything to protect these kids, you have no problem earning our children’s trust and earning our trust.

I know you have hard days. I know you juggle the needs of many children at once and have to work constantly to maintain the peace in the classroom. I know you stay up late working on things for the next day and stay at work late to make sure your classroom is just so for tomorrow. I know you have to work harder than your fellow teachers of typical children to think ahead for the day and to try to see and prevent potential triggers and obstacles. I know the hard days have been physical, but you press on, you don’t lose your cool and you hope tomorrow will be better.

I know you probably have days when you wonder if all of your patience and heart and perseverance are noticed. I know you might have days when you want to throw in the towel and move on to something easier.

I hope you know I see your passion for these children. I see the excitement in your eyes when mine does something new or overcomes something that once would have set him back. I see how hard you work to ensure he has successful days. I see you on the hard days, and I know when he comes home upset, you may have endured a day of screaming and crying. And I know you did everything in your power to calm him.

Know that you’ve given me a break when I needed it the most. Know that you’ve given peace of mind about one aspect of our day to a parent who has to worry about so many other things. Know that your love and acceptance of my child is a welcome change from the rejection and isolation we so often face. Know that every success our children will go on to have is the result of a foundation you helped lay. Know that every struggle and every accomplishment in your classroom are stepping stones to a future they couldn’t have had without you.

I know you wonder if you make a difference. Know that you do.

Sincerely,
A Special Needs Mom

Two woman smile with one of their students.

This post originally appeared on From the Bowels of Motherhood.

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Dear Parents Who Tell Me ‘I Don’t Know How You Do It’

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Dear Parents,

I see you watching me and I feel it happening — you’re comparing yourself, your life, your child, to me, to our life and our child.

But why? Since my daughter was born I have become used to, but not fond of, the comments that have become a part of our lives. Comments like, “You’re so strong,” or “I don’t know how you do it,” and “You’ve been through so much.”

I don’t take compliments well to begin with, and don’t like the focus to be on me. Most of the time the comments are coming from parents sitting in the hospitals same as me, night and day. They come from the parents who get up and deal with what it means to be a parent.

I don’t really understand where this mindset comes from. I can’t wrap my head around you not being able to imagine going through the same experience. I don’t understand why you think you are not strong enough, or capable enough, and I wonder why you sell yourself so short?

We are the same, and I never understood why you act like you don’t know what it is to love a child.

You feel sadness when they are hurt, and anger, frustration and unbelievable loss of control when there is nothing you can do for them.

You sit up all night long with your child who is sick.

You try to soothe a broken heart.

It takes every bit of strength you have not to punch the kid in the face who took your child’s ball.

When your child scraps their knee or has a fever, or you have to spend hours in a hospital waiting room, I am pretty sure you feel the same as I do.

The simple fact is this is your child.

I ask myself, “Would you not go to the ends of the Earth and back again to help them? Would you not do these unbelievable things you say I have done? Would you not give your last breath for your child?”

Being a parent is a rewarding, difficult, tiring and wonderful experience no matter the obstacles we are up against. But when you say these things to me, I feel uncomfortable instantly. Even angry at times. Sometimes I feel shame at words because I am unworthy.

I feel these things not because of you, but because I know there are others out there who would give anything to live the worst day I have had with my daughter — because it is a walk in the park compared to what they have been through.

I know mothers who have lost their children, and yet they say these things to me. I think, “What strength it takes not only to be you, but to show me sympathy, love and friendship. What strength it takes to listen to me complain about what I’ve been through and to not blink an eye.”

I wonder to myself, “How can you be so strong?” I am sure you would live my life if it meant never having to say goodbye to your child.

There is a saying, “God only gives us what we can handle.” I don’t know how I feel about this statement, but I know that we are each given a choice and it’s up to us how we handle it. It’s up to us whether we accept it or not.

I, and other parents, may have a little extra on our plates, but please do not make yourself seem less of a parent because of that. Don’t discount the struggles, sacrifices and triumphs you’ve had.

I deal with the same stuff you do — Bedtime turns in to a negotiation process, my kitchen turns into a short order cook station and sometimes it’s candy for dinner just to get some rest. I’ve spent 10 minutes arguing with a 5-year-old until I finally realized that I am the adult and I make the decisions. I dread the teenage years and the first boyfriends and girlfriends, as well as the day they move out and the moment they don’t need me anymore.

Now, I am not saying that it’s easy to be a parent of a child with special needs; there are things that are extremely difficult. Yes, there are horrible things my child has gone through that I had to be a part of. And, yes, some days I envy you.

I wish I didn’t have to worry about medications, doctor appointments, dietary issues… I wish I didn’t have my own language involving EEGs, AFOs, PTs, OTs and so on. I wish people would not stare. I wish they wouldn’t treat us differently.

But I look back on my life since my daughter was born, and I now know exactly how to answer your question. My strength comes from knowing you will catch me if I fall. I can do this because you are supporting the steps I must walk up, and it will never seem like too much because you are carrying some of the pieces for me.

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I can say these things with full confidence because of you, my family, friends (new and old), and complete strangers. Our paths may be different, but our journey is the same. We just want our children to succeed.

The Mighty is asking its readers the following: Write a thank you letter to someone you realize you don’t thank enough. 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.

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Medical Terms Alone Are Not Enough to Describe My Son

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A couple of months ago, I overhead my son, Daniel, and his friend, Bjorn, talk about a little boy from our church. The boy, who is almost 3, is full of energy and wants to imitate everything the older kids do. Just like them, he gets rough. The only difference is that he still doesn’t have impulse control, so he’ll bite and throw things at you. Daniel enjoys playing with him, but does complain about him being “annoying” sometimes.

“If he were like Caleb, he would be perfect, right?” Bjorn said. Daniel agreed, of course. I couldn’t help but smile. It was not the first time I had heard Caleb being described as “perfect.” Caleb is my child with a severe disability called Trisomy 13.

“Mami, why are Caleb’s muscles weak?” Daniel asked.

“Because his body did not form properly,” I explained.

“Mifis (Daniel’s nickname for Caleb) is perfect. Maybe not a perfect life, but a funny life. And I think his brain is smarter than we think because he is trying to crawl.”

Caleb has been described in many ways. Some ways seem cold and impersonal. Words like “syndromic,” “dysplastic,” “dysmorphic,” and “outlier” are difficult to beautify no matter what. Yet, I don’t mind medical terms that much. They are needed. They tell you facts. They describe the surface.

However, I prefer words spoken from the heart by Daniel and many others to describe my second son. Their point of view is different. It’s from the inside out. Perfect, funny, cute, happy, loved, blessed, brother, son — all these words also speak of what is real in Caleb’s life.

It’s been more than five years since we started this journey, and much has changed. Words that used to describe us have been erased, or at least muffled by others. “Shock” and “shame” have been replaced by “acceptance” and “pride.” I am Caleb’s mom. Sorrow has been eased by joy.

Just a couple of weeks before Daniel’s conversation with his friend, I reminded my husband, Paul, of the time I found him weeping.

“You were sitting on the couch by the stairs, and in the background I could see Caleb’s scrawny body moving in an awkward, almost robotic way on the carpeted floor of our living room,” I said.

“Yeah, I remember thinking, ‘I did not sign up for this,’” he replied.

We both looked at Caleb now happily cooing and balancing on his tummy on the same spot of our living room five years later. Delight had taken over and made that memory truly a thing of the past.

Caleb turned 5 recently, and, according to the medical world, this is a big deal. A huge deal, in fact. According to statistics, the majority of kids with Trisomy 13 die before their first birthday. He is an “outlier” indeed. But more than anything, he is a beloved child and part of a family who feels extremely blessed to call him brother and son.

The Mighty wants to hear more about relationships and special needs parenting. Can you share a moment on your special needs journey that strengthened your relationship? 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.

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Why ‘Welcome to Holland’ Never Resonated With Me

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When I was young, I heard the essay, “Welcome to Holland,” by Emily Perl Kingsley, which compares being a mother of a special needs child to planning a trip for Italy, only to find your plane has landed in Holland. Both have their beauty, but Holland was not what she had in mind.

I understood that this poem resonated with a lot of parents, but for some reason it never resonated with me. “Surely it should,” I would think. “After all, I’m a sibling of special needs kids, and that’s close to a parent, right?”

Wrong.

After weeks of mulling it over, I’ve finally realized why: I grew up in Holland.

As a younger sister of a brother with special needs and sister of 13 siblings, 11 of whom have special needs, I was an American born in Holland.

Although I always knew I was American, Holland was home. In a land where medical procedures roll off the tongue and auto-correct in your texts, I learned to speak the language of prescription medication. I learned to appreciate the celebrations, like the getting-off-medication parties and the happy tears when a 4-year-old with delays says your name. I learned the culture, where co-sleeping, oximeters, doctor’s appointments, wheelchairs, hearing aids and restricted diets are the norm.

I love Holland. It made me into the person I am today. It’s made me appreciative, compassionate, more gentle, more forgiving and more willing to serve. It’s made me more aware of the people around me, and most of all, it’s given me many friends who, too, live in Holland.

Here’s the problem: There’s a big world outside of Holland.

The world outside of Holland is a fast-paced race to the top, where test scores and high pay reign supreme. Where we always need to know who is the best and where the different, the odd and the outcast are looked down upon with pity or distain.

As I grew up, I thought there was a lot that I was missing from not being around “normal” people all the time. But as I grew up and ventured out of my little Holland, I realized something…

I don’t like life outside of Holland much.

author and her family

I don’t like a world that can’t or won’t accept all people, regardless of their ability. I don’t like a world that thinks my siblings are a waste of resources or that intelligence is measured by a score on a standardized test. I don’t like a world that won’t stop to see the beauty of my siblings’ smile, their life and their joy.

As an adult, a lot of people come to me to ask about what having siblings with special needs has “done to me.” I won’t lie, it can be hard. It’s true you might have to share a room and might have to give up extra things. It’s hard sometimes to have to pick and choose activities and hard to have parents split between home and hospital. But the more I grow up and assimilated myself into the real world and the work force, I realize how blessed I have been to have been gifted these siblings. I believe God chose them and brought them to my family for a reason. They have taught me grace, peace, love, joy, sorrow, faith, and so much more. They have taught me to sacrifice myself for the needs of others, to consider others above myself, to celebrate small victories and to always show love.

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3 Techniques That Help Our Marriage as Parents of a Child With Special Needs

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When my husband and I got engaged, we did everything in our power to ensure that we were ready for a lifelong commitment. The most important thing we did was to seek out premarital counseling. Our church offered three sessions, but we felt we needed more and sought out a private marriage and family therapist. That did the trick. Or so we thought.

Along the way, life threw us a few curve balls: cancer (my husband), mental illness (first my parents, then our daughter) and job loss (me). My husband and I did not let these things deter us. We pulled up our bootstraps and did the dirty work. But when our daughter’s unique challenges truly tested us, we were at a loss for what to do next.

At a school meeting for our daughter, a psychologist suggested we seek out family counseling. Our daughter left that school shortly after that meeting, but we took the advice we were given. I asked one of the pastors at our church for a recommendation for a marriage and family therapist who might help our family.

Technique #1: We sought out counseling that focused on both marriage and family health.

We were referred to a wonderful lady who we saw us for almost five years until she recently moved out of the area. This counselor was not only concerned with the emotional health of our daughter, but the health of our marriage as well. It was important to her that we learn how to parent our child and care for ourselves also.

Early on in our special needs journey, I read a story about the regret some parents felt as their children’s teen years were coming to an end. They said that the one thing they wished they had done was to spend more time on their marriage. It’s kind of like a car. A good one needs a tune-up every so often. A car, or marriage, that’s traveled a lot of miles needs more attention in order to keep it running well.

A huge part of this equation was my husband’s willingness to go to counseling. He was humble enough to admit that he needed counseling just as much as our daughter did.

Technique #2: We make sure we’re on the same page when it comes to parenting.

We still face hurdles and obstacles, but we learned a lot of techniques that help us jump over them with as much ease as possible. One of the techniques that our therapist taught us was to try to make sure we are on the same page as far as parenting goes. For many years, I was super strict and my husband was more lenient. We learned to meet in the middle. If we can’t agree on how to deal with a particular issue, one of us will call the other over to discuss how best to resolve it. It’s kind of like a time out for parents.

Technique #3: We ask each other, “How was your day?” after our daughter goes to bed.

We learned how important it is to take the time to discuss how our day was once our daughter is in bed. We have to remember that we are individuals, too, not just parents. We also had to learn to give each other breaks even when things are difficult. When our daughter was unstable, my husband would stay home while I did a Starbucks run or drove around the block for 30 minutes.

I vowed to do my very best to stay married. Having a child with special needs can make things challenging for us, but not impossible. 

The Mighty wants to hear more about relationships and special needs parenting. Can you share a moment on your special needs journey that strengthened your relationship? 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.

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The Sexiest Thing I’ve Ever Heard as a Person With a Disability

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When you enter the dating pool, you expect to hear certain things from prospective dates in an attempt to win you over. You know what I mean. We’ve all heard those little platitudes people tell us about how handsome or sexy we are, etc. Think about it: how many times have you dated or flirted with someone and he or she employed one of these tactics and said something akin to, “You are so sexy. You are such a beautiful person”?  After all, we want to make our dates feel good and show our affections any way we can to secure ourselves a place in their relationship roster.

As a Deliciously Disabled guy, I have heard all this said to me many times over, just like we all have. It feels great to be wooed and made to feel sexy by others, and I definitely have blushed and basked in the glow of these praises — constantly looking over my shoulder to see which other hottie they must be referring to. But as a Person with a Disability (PwD), alongside the accolades, you also tend to hear something else other than sweet nothings.

When people have tried to get close to me or show me they think I am attractive, they’ll often say, “I don’t see your chair at all. I see you as a person!” Or, “I would date you in spite of your chair.” Every time I hear these sentiments, I become extremely conflicted. On one hand, I understand they are trying to show me that my disability will not affect their decision to engage with me. This is a huge step because of the fears some people harbor around the idea of dating someone with a disability, so whenever they say this to me, I try my best to remind myself of this.

On the other hand, just as they are finishing the sentence, “I see you as a person,” I am looking down at my wheelchair and thinking, “This person you claim to see is sitting in 300 pounds of chrome, steel and sexiness; how could you not see it?”

By removing my wheelchair from the equation and saying that they “don’t see my chair,” two things happen:

1. You Are Erasing Me: My wheelchair is one of the most important parts of who I am. Not only does it get me from A to B, it defines a lot of how I understand the world around me. It informs my sense of humor, my sense of style and my sense of the world around me. By telling me you don’t see it, what I hear is that you don’t really see me as a whole person who has learned to navigate, accept and embrace his disability for all that it is. My disability has made me who I am, and I certainly want you to see that.

2. You Are Not Ready to Deal with All My Deliciousness: When you tell me that you don’t see my chair, what I also hear you telling me is that you are not ready to learn what it means to actually engage with me as a PwD. I hear this and worry that you won’t be able to navigate issues around accessibility, and all the realness this brings to simple outings or things that people do on dates that we might have to do differently. How are we going to navigate a date if the elevators, ramps or buttons are broken, and you have chosen not to see my chair? This show me that someone is so afraid of how my disability might adversely affect them they would rather placate me than play with me as a PwD.

The sexiest thing I have ever heard as a Person with a Disability was not, “I don’t see your chair. I see you, Andrew.” In fact, it was exactly the opposite. When I heard them say, “I saw you, and I definitely saw your chair,” I couldn’t stop smiling because finally all of me was being recognized instead of being removed. It was one of those rare moments where I knew that while they may not yet understand all the daily dealings that come with being this deliciously disabled, they were truly ready to learn and engage and discover, and as a PwD, I can tell you there is nothing sexier than that.

The Mighty wants to hear more about your experiences dating with a disability. If you’d like to participate, please send a blog post [email protected] include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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