5 Things I Wish Educators Would Stop Saying to Special Needs Parents

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Over the past couple of years as a parent advocate, and as a parent of a child who has autism, I’ve attended a number of board meetings, district meetings and school meetings with parents. Heck, I even ran for school board trustee.

So I know that trying to make change in the education system feels like searching for a needle in a football field-sized haystack. Parents can be demoralized, and many feel forced out of a system that is supposed to be inclusive of all children. In the last couple of months, I’ve felt particularly defeated. Meeting after meeting, I hear the same things, and it’s incredibly frustrating.

Here are a few things I’ve heard at school meetings so many times, they’ve become like nails on a chalkboard. If you are a school professional (at any level), my hope is that you will consider these things when you communicate with parents of children with extra needs in the future.

1. “All students benefit from x intervention.”

There’s a difference between something being beneficial and something being a necessity. While a typical child may certainly do better with, let’s say, a visual schedule, a visual schedule might make or break the day for a child with special needs. This type of language diminishes the importance of specific strategies needed for our children.

2. “Lots of kids have trouble with x.”

This is only partially true. I also have a typically developing daughter, and yes, there are things she has trouble with. However, it’s not the same. Unlike my son, she does not have a lifelong disability that will constantly challenge her. Imagine telling someone with cancer that “lots of people feel sick.” That would be incredibly unsympathetic. Please don’t tell a special needs parent that their child’s challenges are just like every other child’s. They’re not.

3. “It is unrealistic to expect daily communication. Parents need to let go.”

Many typical children are fully capable of telling their parents what went on at school. They can communicate their feelings about the day, who they played with or anything special that happened. Many children with extra needs cannot. Daily communication is instrumental to ensuring problems don’t escalate, friendships are fostered, learning is reinforced — the list goes on. Without daily communication, parents of children with extra needs are left completely in the dark.

4. “Your advocacy is admirable, but you attract more flies with honey.”

Let’s get this straight: Most of us start with polite requests. Then we quickly realize we don’t need to make more friends or be popular. What we need are supports and services accessible to our children so they can reach their personal potential. In my own experience, I’ve tried many different ways to advocate, from being nice and sweet to firm and assertive. I’ve spoken using facts and I’ve spoken from my heart. It doesn’t really matter. When I look at the history of parents advocating for the needs of their children with disabilities, the sweet ones don’t pave the way for change.

5. “We have other children we are responsible for as well.”

I can’t help but laugh at this comment. Surprisingly, we know that our children are not the center of the universe. It might also surprise you to know that we would give anything not to spend all our time worrying about their education. Some parents of children with disabilities have more than one child. Do you think our children without disabilities are somehow less important to us? Of course not.

Parents of children with extra needs advocate for their children years before they have even entered the education system. We’ve been told, “No,” “We can’t,” “Everything is fine” and my personal favorite, “We are doing the best we can in a very over-taxed system,” so many times we’ve lost count. We are overtired, filled with guilt and maybe, just maybe, we know a thing or two about what might work for our children.

The greatest educational leaders I’ve met are the ones who’ve said, “What if these parents are right?”

mom with her two kids outside of school

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5 Beliefs That Are Harmful to Caregivers

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Caregiving is a complicated role, full of joy and sometimes grief and frustration. Caring for those we love is laden with human drama and is hard enough without imposing beliefs and standards upon ourselves that make it harder.

Belief #1: My role is to give care, not receive care.

Anyone giving or receiving care is in a relationship with the other. As in partnerships of any kind, there is fluidity in the give and take. Why, then, do we sometimes believe that caregivers only give care?  Of course, there is one person in a care relationship who will need assistance with particular activities of daily living. But that doesn’t mean a loved one never gives care in return — a frail senior can pat an adult child’s hand or offer words of wisdom. Sometimes, care comes in more ephemeral ways such as a smile or even an hour of peaceful silence. Friends or extended family members might offer to fill a shift or cook a meal. Caregivers are care receivers, too.

Belief #2: I will be happy only if others show me I am loved.

This belief is very harmful to caregivers because our loved ones can’t always offer positive reinforcement for our private caring acts, and why should they? Caregiving is by nature very personal. The purpose of care is to enable a loved one to be healthy and do whatever he or she would like to do. Happiness and fulfilment are emotions that must be generated by the caregiver within herself. Most successful longterm caregivers have become experts at locating life satisfaction within.

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Belief #3: If I don’t do everything myself, I am a failure.

This is perhaps the most damaging belief for caregivers and care receivers alike. If Steve Jobs believed he could create a computer company with no employees, Apple wouldn’t exist today. Care, like all complex tasks, is best delivered as a team. This doesn’t mean a different person needs to bathe your loved one every day or cook in your kitchen. It means that people need to support you, the caregiver, to thrive in your role. That support will look different for every caregiver, but the constant is that there is a team and the caregiver is the team leader.

Belief #4: I must appear calm and in control at all times.

Caregiving is emotional. There are highs and lows as well as long stretches of quiet repetition. Many caregivers feel that it’s wrong to express frustration or grief — that a show of emotion to medical professionals is “unprofessional” or worse, a betrayal of their loved one. Some caregivers worry that tears will elicit an unwanted pity response in friends or that if they begin to cry, they might not be able to stop. Caregivers need to express emotions, including painful ones. In Julie Keon’s book,  “What I Would Tell You,” expresses this human need acutely:

“Grief can be our silent companion, something to be tended and nurtured. Think of grief as a person knocking on your door who really wants to see you. They knock incessantly… When the knocking starts, instead of hiding, you can take a deep breath and welcome this person into your home… You set a few reasonable boundaries as to how much time you have to give and then you put the kettle on. You settle in for some hot tea and conversation. As the visit progresses, you notice it isn’t as bad as you thought it would be. You are discovering that this person you had always hidden from is wise and has much to offer.”

Belief #5: Work at home is not as important as work for pay.

Wrong! Work at home is vital and it has great worth. In Canada, family caregivers contribute over 5 billion dollars in unpaid labor annually to the national health care system. The next time someone asks, “So, do you work?” answer, “Oh yes!  I work as my mother’s caregiver. And what do you do?”

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Try turning these harmful beliefs into positive ones: My role is to both give and receive care. I can be happy and fulfilled if I choose to be. I give the best care when I work in a team. I pay attention to my emotions, and sometimes I feel better after a good cry. My work is valuable and important. 

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You Know You're a Special Needs Parent When...

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The Mighty asked its readers for some examples of both the trying times and the wonderful moments as a parent to a child with special needs. We loved your answers.

You know you’re a special needs parent when…

1.

Hands holding a stack of books with the text, "You're a walking medical dictionary"

2.

An image of a pair of socks with the text, "When putting your child's socks on is a task that takes at least 15 minutes"

3.

An image of a mom and baby with the text, "You can feel what your child wants before they even know what they want."

4.

A photo of a dad holding his daughter on his shoulders with the text, "You're constantly surprised by your own courage. And by your child's courage."

5.

An image of a baby with the text, "You understand that different is beautiful"

6.

An image of a doctor with the text, "You're on a first name basis with all the staff at your doctor's office"

7.

An image of a father and son with the text, "You've (almost) learned how to forgive yourself for not being perfect."

8.

An image of a mother and daughter with the text, "You will never take your child's health for granted"

9.

An image of a mother and daughter with the text, "You always know when to trust your instincts"

10.

An image of a stack of papers with the text, "You've become an expert at complicated insurance paperwork"

11.

An image of a mother bottle-feeding her baby with the text, "No matter how much you go without it, you'll never get used to the lack of sleep"

12.

An image of a father holding his son on his shoulders with the text, "You've cried more times than you can count, but you've laughed just as many times"

13.

An image of a mother grocery shopping with two kids and the text, "You've (almost) become immune to the looks others give you in public"

14.

An image of a mother playing chess with two kids and the text, "You have to remind yourself 'normal' is a fluid concept"

15.

An image of a woman with the text, "Any day your child keeps his/her pants on is a good day"

16.

An image of a man and woman kissing with the text, "Nothing is more precious than those few rare moments of quiet around the house"

17.

An image of a mother and daughter with the text, "You're capable of more love and strength than you ever thought possible"

18.

An image of a mother, father and two kids with the text "You get invited to a restaurant and you laugh and laugh and laugh, and then decline the offer"

19.

An image of a house with the text, "The neighbors begin to wonder why so many therapists are coming and going from your house all week"

20.

An image of people celebrating, with the text, "You've learned to celebrate the little victories"

What would you add to this list? Let us know in the comments below.

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Dear Hollywood, My Facial Difference Doesn't Make Me a Villain

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Dear Hollywood,

As I sat waiting for my car to be repaired today, a well-known scene played out in front of me. The company’s TV was playing “The Dark Knight” in the waiting room in which I was sitting. Glancing up at the screen, I watched the big unveiling of Two-Face‘s shocking facial features.

If you’ve never watched this particular movie, Two-Face’s name is pretty self-explanatory. His face is divided in two halves: one side is “normal” while the other side is quite the opposite. If he walked into a room full of strangers, he’s the one everyone would stop and stare at… a familiar experience for me.

Although he’s a fictional character, the name Two-Face is like nails on a chalkboard to my ears. Like Two-Face, my face is divided in half. In my case, however, I have a birthmark that’s purple in tone (a port-wine stain) covering my left cheek. As a child, a classmate used this fictional character’s name like a weapon against me. To this day, I can recall exactly where I stood in my elementary school cafeteria when he used those hurtful words to describe my 7-year-old self.

Watching the scene unfold in front of me, I started to wonder — what movies show people with facial differences as the hero instead of the scary villain? As I sat there thinking about this question, only villains came to mind (keep in mind that this is a small, basic list):

• Scar from “The Lion King,” a scar being one of his evil definers. In fact, his facial difference is his name.

• Beast from “Beauty and the Beast.” He has a different kind of “difference” because he turns into a human later on, but while he looks different he is shown as angry, bitter, friendless and controlling.

• Two-Face, as mentioned above.

• The Phantom of the Opera from “The Phantom of the Opera.”

• Freddy Krueger from “Nightmare on Elm Street.” (I’ve not actually watched this movie, I’ve only heard of it and seen images from it.)

• Penguin from “Batman Returns.”

• Lord Voldemort from the “Harry Potter” series.

• Witches from a lot of different movies (warts, long and crooked nose, green face).

Maybe there are movies portraying people with facial differences in a positive way, maybe even as a hero! But more often than not, we’re stereotypically portrayed as evil, bitter, isolated and ugly people. I know there are villains who look “normal” in the movies. But those who look “normal” also have a lot of representatives playing heroes. There can be a healthier balance.

If you’re going to portray people with facial differences as evil, please balance our bad-guy character representatives with good guys. Help show the world we have positive value in this world. We may not look like the stereotypical Prince Charming or Disney princess, but we’re heroes, too. Maybe we’re not all saving the world in a dramatic Hollywood way like Superman or Batman, but we’re impacting it.

Many people with facial differences can tell you stories full of struggle and pain. We’ve all been bullied. We’ve all been made fun of and stared at — and that doesn’t stop once we graduate high school. Having a facial difference equals a lifetime commitment to harsh treatments.

Yet, these hard experiences don’t make us villains. They don’t make us evil. These experiences help us learn to overcome and develop strength and compassion. They help us see the world in a different, beautiful way. We’re just ordinary people who happen to have extraordinary circumstances.

I work at a elementary school. During today’s lunch recess, I noticed a distressed child on the blacktop. She was sitting on the hot, summer blacktop and I was trying to help her gain the strength to stand on her own two feet again. As the child cried out her sorrows, she told me another child rudely yelled at her to “shut up.” I tried my best to remind her that her words and thoughts matter. I told her she matters.

As the tears started to dry on her flushed cheeks, I shared a bit of insight that took me many years to understand: Ultimately, no matter what other people say to us or how they may treat us, we have to decide how their words and actions impact us. We’re the one in charge of how other people make us feel. No matter what others try to say and do to us, we know who we are — and that’s what matters most.

Maybe not everyone with a facial difference is changing the world in a noticeable way. But some of us are changing the worlds of the people around us. Like the weeping child sitting on the hot blacktop, that child’s world is the world that matters.

We’re brothers, sisters, moms, dads, daughters and sons who come from all walks of life. We’re people with a purpose. We’re people with stories to tell, playing the part of the hero to those around us.

Maybe we don’t look like the average Joe, but we’re still beautifully and wonderfully made, full of potential with a lot amazing things to offer the world.

Help us teach current and future generations with unique facial features that they can be heroes, that they can do anything they put their minds to. Help us teach them that they don’t have to be isolated, bitter or angry, that they can dream big dreams and achieve those dreams! Show them that they have value.

Hollywood, you have the power to make a change.

We, too, are the heroes. We’re the good guys.

Please stop encouraging and embracing the stereotype we fight against on a daily basis.

The Travelin’ Chick and a Beautiful Hero,

Crystal

A version of this post previously appeared on The Travelin’ Chick.

Do you have a story about your experience with disability or disease? Maybe a moment that made a big impact on you? Please send it to [email protected] and include a photo for the story, a photo of yourself and a 1-2 sentence bio. Check out our “Share Your Story” page for more about our submission guidelines.

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To the Special Needs Parents Who Don't Fit In

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I know you. You sit alone at the specialist’s office while the other parents chat about the gains their children made in therapy. If there’s a .01 percent chance of a complication/diagnosis/rainy day, your child will experience it, 100 percent guaranteed. You visit special ed programs that are too advanced for your child, and cry after leaving the school.

I was you. I am you.

From the instant she was born, my daughter did not fit in with other children. Complications during her delivery led to multiple skull fractures and bleeding in her brain. In the NICU, she was a giant in the land of preemies, all 8.5 pounds of her crammed into an isolette more commonly used for babies a quarter of her size.  Once she was removed from the ventilator, her paralyzed vocal cords and collapsed lung meant nothing – in a sea of silent babies and beeping machines, you could hear her cries from down the hall, past the front desk, scrub-in area and the storage lockers. During those three weeks, it became increasingly clear that – for the rest of her life – she might not fit in.

This can be true for other special needs kids, and, as a result, for their parents.

My daughter is fed primarily though her g-tube. The “tubie” community is a valuable resource, yet common questions online are about how to affix a pump to an active child or how to help their child explain their tube to their friends. My daughter will probably never walk on her own (if at all) and might never be able to communicate in ways other than crying, laughing or throwing toys on the floor. She’s also in a wheelchair, but lacks the awareness to be proud this is “how she rolls.” My daughter is also visually impaired. This community means get-togethers with games like “Beeping Frisbee.” (See above limitations; you can keep your beeping Frisbee.)

As a result, it’s difficult to find a place where we fit in as parents. Community in the NICU was primarily geared toward parents of preemies. I didn’t want to participate in scrapbooking tiny footprints (my child’s footprints covered two pages) while looking at photos from NICU reunions of children running toward their former nurses to thank them. It was many months before I tried to fit in again, when I found a group where we had some common ground.

And I came to realize that you can fit in – and be alone – all at the same time.  For me, this meant letting people into our lives, including those who I call “the greatest people we wish we’d never met…”

  • NICU nurses A and J, who cared for my daughter when she was at her most critical, who took the time to talk with us as parents and as people, and who didn’t hide their emotions when upsetting news was delivered. I’ve enjoyed seeing their families growing after such a rocky start to mine.
  • The moms in my moms’ group of medically fragile children, who – despite having children with differing diagnoses – are all too familiar with the combination of conditions that make our kids particularly special. Seeing their families grow after having a first child with significant special needs, especially those involving trauma during delivery, helped to affirm that we, too, could grow our family after my daughter’s birth.
  • Preschool teacher J, who is the most creative person and who engaged my daughter in the classroom, despite her being miles behind the other kids in her class. The video she sent one day of my daughter’s classmates exclaiming in wonder when my daughter took two (supported) steps, and the little boy who tried to hug her immediately after, still brings me to tears. I hope my infant son grows up to be that much of a cheerleader and supporter of his big sister.
  • And K, the amazing-beyond-words caretaker of my daughter for the past three and a half years. She’s devoted to our daughter, and I know she cares for her deeply. She’s truly a member of our family.

The greatest people I wish I never met were always right in front of me, and they’re willing to talk, listen and share with us. I now realize we are not alone – even though we don’t fit in. I hope the same is true for you.

The Mighty is asking the following: What’s one unexpected source of comfort when it comes to your (or a loved one’s) disability and/or disease? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our “Share Your Story” page for more about our submission guidelines.

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My New Take on 'God Only Gives Kids With Special Needs to...'

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Today, exhausted and in need of support, I vented to a group of my mom friends about my daughter’s epic sensory meltdowns. They listened intently as I described her shrill screams when she’s overwhelmed. They shook their heads with sympathy when I recounted her hitting, biting and kicking.

When I’d finished, only one of them was brave enough to respond. “I think God only gives kids with special needs to people who can handle it. You are so strong and amazing,” she said.

Two simple, heartfelt sentences. Two powerful sentences. Two sentences other mothers of children with special needs have told me they cannot tolerate. Two sentences often the focus of countless articles on the internet — “10 Things Never to Say to a Special Needs Parent” or “5 Things Special Needs Parents Hate Hearing.” I’ve shared these articles on my Facebook page. I’ve “liked” them. I’ve fantasized about high-fiving the authors.

And then my friend uttered those two sentences. Two sentences I was prepared to despise. Two sentences that — for whatever reason — did not offend me at all.

In that moment, I came to the realization that I didn’t share the same opinion as some other parents and writers in the special needs community. While I understand the importance of writing these pieces  — to protect our children, to educate the public, to raise awareness and to form connections — I question if these writings sincerely bring us together. I feel they have the potential to tear us apart.Why?

Because the people who need to be reading these articles aren’t — just like a thief isn’t going to take the time to stop and read a “No Shoplifting” sign in a store. Who reads that sign? The people who pay. The people who are honest. The people who care.

So who are the people taking the time out of their days to read these pieces?

They’re our well-meaning friends and family members — the people there when our children first receive their diagnoses. They see our tears and feel our pain, and with love in their hearts, they say, “God only gives special children to special parents.”

They listen to us explain our many fights with the insurance company for the adaptive equipment our children so desperately need, and with admiration they say, “Your child is so lucky to have you.”

They watch us run back and forth from physical therapy and occupational therapy and developmental therapy. When in exhaustion we say, “I can’t do this,” with encouragement they respond, “You are strong.”

These are the people reading our articles. The people who love us. The people who may not be perfect but who mean well. The people who are trying and who care. And the last thing I want to do is push someone away for trying — trying to pay me a compliment, trying to show me support, trying to interact with my child.

Although I may be entirely alone in this thinking, maybe it’s not just others who need guidelines on how to interact with the special needs community.  Maybe we need them too:

 I will believe in the goodness that exists in each of us.  

I will appreciate those moments when you speak from the heart.  

I will listen with an open mind for your intended message.  

I will not expect you to be perfect.

I will value any and all of your efforts.  

I will forever be grateful for the care and compassion you show.

To my friend who said I was strong and amazing, thank you. To anyone reading this, so are you. And I say that with so much love, because I care.

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The Mighty is asking the following: What’s one commonly held opinion within the community surrounding your disability and/or disease (or a loved one’s) that doesn’t resonate with you? If you’d like to participate, please send a blog post to [email protected]Head here for our blogger guidelines.

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