When People Think I’m ‘Sensitive’ About My Child With Special Needs

0

“I know how sensitive you are about these things.”

Ouch. It was a comment made in an attempt to be sensitive to my feelings, but it felt like a punch to the gut.

“These things” she was referring to happened to be people leaving out, discriminating against, bullying or otherwise hurting my son, A-Man.

I get a bit sensitive when my other son, Mr. C, is invited to a play date for the fourth time in a row without A-Man.

I get a bit sensitive when people imply I should avoid having more children with special needs.

I get a bit sensitive when someone asks me why my son doesn’t play like a “normal” kid.

I get a bit sensitive when people criticize me for feeding my son foods he will eat instead of forcing food he can’t tolerate.

Yeah, I guess she was right.

A-Man is routinely left out because people won’t make an effort.

I’m not ignorant. I know it can be more challenging to take a child with autism to the park than to take a child without any special needs. I know when family and friends want to take Mr. C for a play date, they just need to buckle him in the car and let him play, while taking A-Man requires pull-ups, pre-planned snacks and handling potential meltdowns. I know Mr. C can easily listen when someone tells him to stop playing with something, while A-Man can easily become fixated on something (and it’s usually something he shouldn’t play with, like cords and wires).

But I also know it doesn’t take that much effort to make something work for A-Man. Pack some extra baggies of goldfish crackers, give him some time to adjust to new surroundings and he will have just as much fun as Mr. C almost every time. There are some events A-Man truly can’t handle, like spending the night somewhere new or going to Chuck E. Cheese, but those are the exception and not the rule. So yes, when A-Man is left out of an outing or event he would really enjoy simply because it might take a bit more effort, I’m sensitive about it.

People say terrible things about others with special needs without realizing.

I know in this day and age, it’s nearly impossible to say anything without offending someone. I believe that’s especially true in the special needs world. It feels like if I say A-Man is autistic I might offend roughly half of the population, and if I say he is a boy who has autism I might offend the other half. I tend to give people the benefit of the doubt, especially if they don’t have any reason to understand children with special needs. I do realize most people are not intentionally being cruel, but sometimes it gets really old. When someone asks what’s wrong with A-Man or says something like “my child would never still be in pull-ups at 4,” I get a tad sensitive. Right now A-Man doesn’t understand cruelty, which I’m incredibly thankful for, but one day he will. I will not allow people to insult him no matter how sensitive that may make me.

Being a special needs mama can be hard.

This is probably the biggest reason I’m sensitive. Between the pull-ups, meltdowns, food sensitivities, therapies, specialists and 947 other things we deal with every day, we honestly don’t have the time or energy to deal with people being terrible to/about us or our kids. We are tired and overwhelmed. We get overly excited over small victories, like a trip to the grocery store with only one meltdown, and we can get easily upset by difficult setbacks. When you heavily favor our kids without special needs over those with, or you make nasty comments about our kids or our parenting, it adds another thing to our already heavy load.

So friends, we know you aren’t trying to be cruel, and please know we’re not trying to be overly sensitive. Most of the time, we are just sensitive for our kids with special needs because we have to be. The world isn’t always sensitive to them and their needs, so it hopefully isn’t too much to ask for our friends and family to be a bit sensitive to our needs.

Follow this journey on This Outnumbered Mama.

The Mighty is asking the following: Write a letter to anyone you wish had a better understanding of your experience with 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.

Lead photo source: Thinkstock Images

0
TOPICS
JOIN THE CONVERSATION

What This Mom Wants You to Know for Down Syndrome Awareness Month

1k
1k
0

Before I had a child with Down syndrome, I probably would have rolled my eyes when I realized October is Down Syndrome Awareness Month. I mean, aren’t we aware? We’re aware of these people who look differently than we do. Why do we need another awareness month, especially for a condition with no cure?

Yeah, I wasn’t very empathetic then. Down syndrome changed that. Down syndrome changed many things.

Down syndrome has made our lives fuller.

Our schedules are full of doctor appointments. Our days are full of therapy exercises. But our hearts are full of a fierce kind of love we didn’t know existed and of a hope we’d only read about.

Here’s what I want you to know this Down Syndrome Awareness Month: Our son Anderson’s life is not a tragedy. Our lives are not a tragedy. None of us are living a less than life because of Anderson’s extra 21st chromosome.

There is no need to give us a sympathetic look or say to our son, “poor baby” when you learn of his diagnosis. There’s nothing poor about Anderson. There’s nothing poor about us. We are some of the richest people I know. We have, in part, Down syndrome to thank for that.

Down syndrome doesn’t define our son. It doesn’t define us as a family. But it is teaching and molding us into the people we were meant to be.

We know some things will be more difficult for Anderson because of his diagnosis. But all of us have strengths and weaknesses. And in Anderson’s nine short months of life, we’ve also seen the power that extra chromosome possesses — for him and for us.

Because of Down syndrome, we care more, worry less and both love and fight harder.

There’s nothing down about that.

Follow this journey on News Anchor to Homemaker.

1k
1k
0
TOPICS
JOIN THE CONVERSATION

To the Kids Who Bullied Me Because of My Disease

257
257
2

I was diagnosed with Crohn’s disease 17 years ago at the tender age of 11. After my diagnosis, losing a significant amount of weight and missing prolonged periods of school, I never thought for a moment it would become fodder for some fellow classmates to use against me.

After a month-long hospital stay I walked into what would become a five-year nightmare. I was called many cruel names such as ugly and gross, and people said I had an eating disorder. The bullying didn’t just stay at school; it followed me home as well. The one place I was supposed to feel safe was taken away from me. The older we got, the worse it became. I would find food in my mailbox with cruel notes, and I had to disable my email and messenger accounts because there would always be nasty notes left for me.

At around 15 years old, my mom hired a tutor from the school district to homeschool me, and by 16 years old, I tested out of 11th and 12 grades in three months and graduated early.

This is what I want to say to those who bullied me:

I don’t know if you ever think of what you did or said to me. But did you ever realize that while you were calling me names, showing up at my house and leaving me messages to make sure I never missed a thing you said, you were making fun of a young girl who just found out she had an incurable disease? That’s the thing about so many diseases — they are invisible. You can’t see them, so people don’t believe they are there. While you thought I was lying and had an eating disorder (like that makes what you did any better), and I was dealing with your bullying at school, I’d go home and have to spend many hours in the hospital and get IV medications to keep me alive, get blood work done weekly, experience multiple hospitalizations and have more surgeries than any child should ever have to endure.

School was suppose to be my break away from that all, but you took that away from me. You took away what was supposed to be the best years for a teenager. I didn’t get to experience prom because I was afraid of what would be said or done to me. You temporarily took away my self-confidence, and my ability to trust and make friends for awhile — but worst of all, you made me feel gross and ashamed of having a disease I never asked to have.

But what you didn’t take away from me was my strength, and my ability to gain all those things back over time. Through my pain I’ve been able to help countless others with similar stories to mine and mentor young girls to have positive body images. I’m going to talk to the class of my son (who has autism) this year on differences and acceptance, as well as stopping bullying and speaking up for others. Nobody should ever have to feel the way I did for so many years. Crohn’s disease isn’t gross or anything to be ashamed of; it’s a debilitating disease that many people unfortunately have.

I want you to know your words didn’t stop me, and I’ve forgiven you long ago. What your words did in the long run, was make me see how strong I truly am, and to be the best person I can each day for myself and for others, too.

The Mighty is asking the following: Write a letter to anyone you wish had a better understanding of your experience with 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.

257
257
2
JOIN THE CONVERSATION

Taylor Swift Donated $50,000 to Backup Dancer’s Nephew Who Has Cancer

0

Taylor Swift is at it again.

After one of her backup dancers, Kim “Toshi” Davidson, shared a photo on Instagram of his 13-month-old nephew who has cancer, Swift swooped in and donated $50,000 to little Ayden’s GoFundMe page.

Screen Shot 2015-10-02 at 8.22.47 AM
Via Instagram

Beneath the generous donation, which she made on October 1, Swift wrote the following.

“Baby Ayden, I’m lucky enough to perform with your uncle Toshi on tour. All of us are praying for you and your mama and sending so much love your way. Love, Taylor.”

Davidson posted a picture of Swift’s donation to Instagram along with a message of thanks.

Screen Shot 2015-10-02 at 8.35.07 AM
Via Instagram

So I get off the plane in Toronto and this is the first thing I see… Taylor Swift is an angel and my family and I can’t thank her enough. She is such an incredible human being. This will help Lil Toshi in this time of need. Let’s pray for him to beat this. This unexpected gift is truly a blessing.”

Screen Shot 2015-10-02 at 8.51.29 AM
Via Instagram

This isn’t the first time the superstar has done something this generous. In July Swift donated $50,000 to a sick fan who missed her show. In fact, Swift has donated so much money on GoFundMe that the site had to increase its donation limit, according to GoFundMe CEO Rob Solomon. Swift has given more than any other donor in GoFundMe history.

0
TOPICS
,
JOIN THE CONVERSATION

To My Fellow Parents, From a Sometimes Sensitive Special Needs Parent

0

When my son is brought up in conversation, which is quite often, you mean well. I understand this. The conversation will always start off with, “How is your son doing? Did they find a diagnosis yet?” And my response will always be, “He is doing as well as he can be! No, no diagnosis yet.” The rest of the conversation is variable but typically includes a well-meaning variation of, “Oh, he will all right. One of these days, he is going to just get better and will surprise us all!”

This is not the truth, and on my bad days, I can subconsciously find this response insensitive. When you talk about my son getting married someday, when you talk about him running around at school someday, it can stir emotions in me that can dictate the rest of my day. I know you mean well. I know you don’t quite know what to say. I smile and say, “Yeah, that will be something.”

The truth is, my son more than likely isn’t going to get married or run around like a typical child at recess during school. My son has a disease that cannot be diagnosed. He suffers from a neurological and/or neuromuscular disease that have the best doctors scratching their heads. My son has a ventilator and a gastrostomy tube.

I do, in fact, have a very happy son. He is not like your child, though. My son cannot talk, sit, crawl, roll, walk, eat or reposition himself. But goodness can he smile, laugh, grab his toys and pull my hair. He is the most positive thing in my life, my reason for smiling and having hope in life.

When I get down about wishing I could hear my son cry or wish he could tell me what he needs, your response is, “No you are so lucky not having a baby that you can hear cry or ask a million questions. It is a headache.” In reality, I would love for my son to cry, and I would answer all million and one of his questions. It would be so comforting not to have to walk into his room and see he has been crying, leaving me with the heartache of not being able to help him sooner if only I had known.

When I reminisce about the short two months I was able to feed him baby food, your response is, “Children are such picky eaters, consider yourself lucky.” Lucky? I cry over how much I miss holding that spoon and watching his delight while he consumed his sweet potatoes. I miss being covered head to toe in carrots. I know you mean well. I know feeding time is probably stressful for you, but our favorite bonding time was stripped from us without warning, in the blink of an eye.

I look at other parents and I cannot imagine the stressors you deal with on a daily basis. It makes me smile. Seeing the disasters that can ensue and the embarrassing scenarios that can unfold, it makes me happy. Although I do not get to experience these types of things, I am so glad that you do. And I am always here to laugh with you or listen while you vent about the rollercoaster of parenting. I just ask that you be gentle with me. Even though I handle it well on the surface, inside I might be torn apart. I know the side you see of our life looks normal, full of bliss and stress-free. Behind the scenes is a place most of you do not get to experience. Underneath the smiles and accomplishments lie heartache, setbacks and fear. Be mindful. Be supportive. Be encouraging. I need it more than you know.

Sincerely,

A sometimes sensitive fellow parent

The Mighty is asking the following: Write a letter to anyone you wish had a better understanding of your experience with 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.

0
TOPICS
JOIN THE CONVERSATION

A YouTube Commenter Called My Son the R-Word, so I Reached Out to His Mom

0

You wouldn’t think that blogging about parenting a child with special needs would incur disgust, wrath and vitriol. Yet over the years, it occasionally has. Mostly, I choose to pity the haters — what kind of pathetic human beings make fun of a kid with disability or attack a parent trying to raise awareness and respect? Do these people even have mothers? Yes, it seems, some do. And I know because I tracked down one of their moms.

A few years ago, I made a video to explain why the words “retard” and “retarded” are demeaning and hurtful. People regularly leave comments such as “What a retard” and “He’s a retard, no matter what you call him,” similar to ones left here when I’ve written on the topic. But one comment — “Your son is retarded. get over it. jesus christ go kill yourself already” — stood out, both for its hostility and because the commenter’s full name and photo were displayed. Anger flared as I stared at his face. He looked to be in his early 20s. I did stupid stuff in my 20s that I regret, to be sure. But nothing hurtful or cruel like this.

I write about my son, Max, in part to show just how much more a child is than his disability, and to help people better understand kids with special needs and be more welcoming toward them. I expect some to disagree with me when I take a stand, and that I’ll encounter ignorance and prejudice. But I had a visceral reaction to this guy. Not that commenters who hide behind the wall of anonymity and spew venom are any better — that makes them cowards, too. It was just that laying my eyes on an actual hater was disturbing. It made the possibility of my son someday encountering someone like him all too real. It made my mama-bear instincts kick into high gear.

Usually I just click “Report spam and abuse” and then “Hate speech or graphic violence.” This time, I decided to track the guy down. Facebook friends gave me some leads, but in the end it was remarkably easy: The “about” section on his Google+ page listed his college, city and state, along with a place where he’d once worked.

In a minute, I found his Facebook page. He was in a relationship. He was now studying music at an institute. And he clearly had no problem displaying his disdain:

People have varied approaches to dealing with haters and trolls. Jimmy Kimmel has an ongoing Celebrities Read Mean Tweets About Themselves series. Months ago the Holderness family, of Xmas Jammies fame, did a Comments of Love video, setting choice phrases such as “This family makes me want to sterilize myself” to the tune of “Seasons of Love” from “Rent” (which is why they had to take it down). Heather Armstrong of Dooce created a Monetizing The Hate website, complete with noxious emails and comments she gets — and revenue-earning ads. People also hunt down trolls with tools like IP Tracker Online and other tactics, as detailed in this Forbes article.

I told the troll’s mother.

I Googled around some more. This guy’s parents held civic leadership and community positions and seemed like good people. I wondered if the mom might want to know what her son was up to; if this were my child, I would, no matter his age. His online nastiness could come back to haunt him during a job search. His comment was traceable to their family and could have an impact on them. And maybe, just maybe, his mother would want to let him know how awful he’d been.

Some time later, I wrote her a letter. I hesitated to send it; was I being stalker-like? But the feeling passed; I wasn’t the creep. This is the note I mailed:

Dear Ms. ____,

My name is Ellen Seidman. I’m a journalist, but I’m writing to you as a mother about a matter concerning your son, ___.

I write a blog called Love That Max. Max is my son, and he has cerebral palsy and intellectual disability. Several years ago, I started speaking out against the use of the word “retard,” which perpetuates negative stereotypes of kids and adults with intellectual disability. The Special Olympics has a dedicated campaign for this, Spread The Word To End The Word. Many parents like myself — who want nothing more than respect for our children — have spread the word.

I made an awareness-raising video that I put on YouTube called “Would You Call My Child A Retard?” It’s attracted many comments over the years, including one your son left several months ago. Here’s a photo of the comment he left:

You can see it here: https://www.youtube.com/watch?v=16CxvRjx-34

I could have reported this to YouTube as “hate speech or graphic violence” or “harassment or bullying,” which is what I typically do with comments that are offensive. But this comment crossed the line, as it was both cruel and seemingly threatening. Plus, your son chose to comment using his photo and full name.     

It was simple enough to Google ___ and find information about him. I had many thoughts about how to proceed—should I contact his school and tell them? Should I contact him directly? But in the end I thought, I’m going to tell his mother. I hope she’d like to know.

If you find this unnerving, please try to imagine how I felt when I saw your son’s comment. I usually don’t let them bother me; I choose to pity the people who say such things. But this one has stayed on my mind.

I hope you seize this opportunity to speak with your son about respecting people with differences. Words do matter. The way we describe and talk about people with disabilities matters. My son and others like him have enough challenges and roadblocks to overcome in this world. Using respectful language isn’t the answer to making people more welcoming to him (if only), but every bit helps.

Like many parents of children with special needs, I will do anything and everything I can to pave the way for my kid, even reaching out to total strangers.

An apology from your son would be appropriate. If nothing else, I ask that your son delete his comment from my YouTube video. I will not do that for him, and it will remain there until he does.

Thank you for your attention.

I was dubious I’d hear back. About a month later, though, I got an email from her.

She wrote that she was “sad and sorry” to receive my note. She said she has two older siblings who are deaf and that growing up, “they were frequently subjected to being teased, ignored, ridiculed and called ‘retards.'” She noted, “I have taken great pains to educate my children about the importance of valuing differences and standing up for others.” She told me that she’d spoken to her son about my letter and the hurtfulness of his comments. She said her son was a “troubled young man” and while she had worked to address his issues, she rarely saw him.

“Please accept my heartfelt apology for the pain my son’s comments have caused you,” she said.

There it was, proof that the commenter had issues — exactly what you suspect about haters. And a sobering reminder that mean people can be raised by decent parents. I felt badly for her. Yet I thought she had to know her adult son’s shameful behavior was linkable to her, and he needed to know there are consequences. I hoped her words had an impact on him. In the end, I didn’t regret reaching out to her.

I emailed back, thanking her for her apology. I said I hoped her son would soon be on a better path. “You never know, do you, what course parenthood will take,” I wrote.

I waited a while to see if this guy would remove his comment. He didn’t.

Months later, I went to YouTube and deleted it myself.

This post originally appeared on Love That Max. More from the blog:
22 free things, services and grants for kids with special needs
5 great tips for helping kids with special needs brush their teeth
Special needs motherhood, pretty much summed up in GIFs

Spread the Word to End the Word! You can head here to pledge to stop using the R-word. It’s a step toward creating more accepting attitudes and communities for all people.

The Mighty is asking the following: Describe a moment you were met with extreme negativity or adversity related to your disability and/or disease (or a loved one’s) and why you were proud of your response — or how you wish you could’ve responded. 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.

Lead photo source: Thinkstock Images

0
TOPICS
JOIN THE CONVERSATION

Real People. Real Stories.

8,000
CONTRIBUTORS
150 Million
READERS

We face disability, disease and mental illness together.