What I Tell My Son With Special Needs When He’s Sad About Not Having Friends

2k
2k
8

My son, S., is a special person with a heart made of gold. S. has autism spectrum disorder, ADHD, sensory processing disorder, OCD-like tendencies, global developmental delays, gastroparesis and a carnitine deficiency, so he’s what people would consider “medically fragile” or “special needs.” To me, he’s just a precious little boy who’s a little behind than most and has his own set of quirks.

In the last year, after lots of intensive therapies, he’s made a lot of progress. Because he seems so much happier since then, nothing could’ve prepared me for what he told me on a recent afternoon.

He just came home from school, but he wasn’t his usual peppy self. He sat down on the couch and got his distant “zombie Elvis” look. I got his attention and told him it was time to go to his therapy appointments. He gave me a look that spoke volumes to the amount of sadness he felt, then he said, “Mommy, I like P., N., and C. (his classmates), but I don’t have any friends. I want friends, but I don’t have any.”

My heart shattered for him at that very moment.

My poor baby shouldn’t feel this way at 4 years old. If he feels this way now, what’s going to happen when he gets older?

I scooped him up in my arms, and his little brother gave him a big hug. I told him, “I’m your friend, and so is D.” (D. is his brother.) “And we’ll always be your best friends.” S. got up and and got in his car seat with a smile on his face. That was good enough for him.

I still think about that moment, though. D. and I are enough for him for now, but I know there will come a time when we won’t be, and it breaks my heart. He tries so hard to make friends; he’s just not capable of doing so at this point, and I don’t know how to help him.

I’m sorry, my precious little love. I don’t really have the answers for you, and I know I won’t always be the friend you’re looking for, but I’ll always be here for you. I’ll help you in any way I can, and I promise you’ll have a friend in me for as long as my heart is beating.

I know you’re a little rough sometimes because you don’t always know how strong you are or where your body is. I know you try your hardest to make friends. I know you initiate conversations, but you can’t always maintain them. I know you run in circles and flap around trying to calm yourself down. Maybe it scares the other kids, and they don’t get to see how sweet you are. I wish they could, baby, but know this: One day, someone will come along, and they will love you. They will see past all your quirks and love you for the sweet, beautiful little boy you are.

So stand tall and proud, baby boy. You are perfect just the way you are, and everything else will fall into place.

2k
2k
8

RELATED VIDEOS

TOPICS
,
JOIN THE CONVERSATION

Dear Neighbors, Here's What You May Not Know About My Teenage Trick-or-Treater

7k
7k
11

Dear Neighbors,

Halloween is coming! And since we live in suburbia-o-rama, where cars drive in from other areas to enjoy our perfect-for-tricks-and-treats neighborhood, you all are about to experience the magic of adorably costumed children with that gleam in their eyes that can only come from the anticipation of buckets filled with candy.

What you all may not be ready for, however, is the occasional giant kid ringing your doorbell. That kid who looks, to you, like he’s much too old to be out trick-or-treating among those smaller kids.

You may even say to yourself, “Shame on that kid! Obviously she’s only out for the candy. Selfish.”

Well, I’ve read a lot of different articles lately about those teenagers who cling to their childhood on Halloween night, and how wonderful it is for them, and how we should let them enjoy these last few years of Halloween while they can.

And I totally agree. It’s wonderful, and all those teenagers are welcome at my door.

But what I’m writing about here is my own 6-foot-tall Halloween participant — another trick-or-treater you may not be ready for. The lanky, skinny kid who will be dressed head-to-toe in a black synthetic fiber Morpher suit, carrying his light-up pumpkin bucket while other kids his age are carrying pillow cases.  

The same kid who used to ring your doorbell on Halloween, say “trick or treat!” much too loudly, and look at your offerings. The kid who said “No, thanks” if you didn’t have Hershey’s plain chocolate, plain M&Ms or Twix. The same kid who now will take anything you have because he knows he can trade it in after he gets home for what he prefers.

The tall kid with size 12 shoes whose father will be waiting for him at the foot of your driveway, just as he has for the past 14 years.

That tall kid is my TJ. He’s 15 years old and on the autism spectrum.

boy in halloween costume

On the outside, he looks like any other 15-year-old boy. He’s got a faint mustache, getting thicker, that he refuses to shave. He’s got some beard hairs (that he sometimes counts and keeps track of, by the way), and he’s a little pimply. He’s got a deep man-voice.

On the outside, he’s a teenager. On the inside, however, he’s still very much a kid.

My boy still loves “Sesame Street.” He DVRs it every day and fast forwards to The Count’s “Number of the Day.” He still loves his elementary school animal books. We got rid of one of his favorites by accident last spring in a yard sale, thinking he’d grown out of it. Huge mistake. We just got a replacement book delivered last week (thank you, Amazon!). He loves the exact same lunch he’s loved since kindergarten. Ham in a bag. Bread in a separate bag. An apple (now we don’t have to cut it up, he eats it whole. Huge accomplishment for us!). Two Oreos.  

And he loves trick-or-treating on Halloween.

Yes, on the outside he looks like he is too old to participate in this childhood tradition. Yes, you may think “Halloween is for the young children! I’m not going to indulge a selfish teenager only out for candy!”

You are, of course, entitled to your opinion.

But please understand that while TJ is in high school and working hard to be a responsible teenager in class, once he gets home, he’s all kid.

It’s more comfortable to him. He has no interest in social media. He’d rather watch “It’s the Great Pumpkin, Charlie Brown” over and over again — the VHS tape, not the DVD because that’s what he’s been doing since he was little.

He would rather watch a cartoon alone than go to a movie with a friend.

He would rather draw his Simpsons characters, cut them out and sort them, as he thinks of different episodes in his head.

These things provide comfort to a boy who works tirelessly to hold it together at school day after day, where responsibility and attention to detail is required.

Let’s face it, growing up is no picnic, autism or not. How many times have you thought of the ease of childhood with yearning and wonder? How many times have you wished you could go back to a time of minimal responsibility?

So when you see my tall boy on your doorstep, holding out his light-up pumpkin, yelling “trick or treat!” at you, please try to remember that even though he’s grown up on the outside, he’s still, in many ways, a kid on the inside.

A thrilled, excited, happy, comfortable-in-his-skin kid who just wants to enjoy this child-focused event like every other kid.

Thank you, neighbors, in advance, for giving my sweet boy another year of good Halloween memories.

7k
7k
11
JOIN THE CONVERSATION

Mom's Photos of Daughter Spark Debate on What Autism 'Looks Like'

97
97
0

Editor’s note: This story has been removed for not complying with our editorial guidelines. 

97
97
0
TOPICS
JOIN THE CONVERSATION

Teen With Autism Says 'The Muppets' Already Had a Character on the Spectrum

3k
3k
26

When the news broke that “Sesame Street” was introducing Julia, the show’s first character with autism, it sparked important conversations among both families and advocates.

While educating children about autism and acceptance is a huge step forward, one family doesn’t seem to think it’s that big of a deal. Blogger Jennie Baird wrote an article for the New York Times explaining that her 14-year-old son, who has autism, says “The Muppets” already had a character on the spectrum: Fozzie Bear.

 

Squad goals.

Posted by The Muppets on Saturday, August 8, 2015

In Baird’s post, she writes:

I had never thought of Fozzie that way, but my son had a point. Fozzie is not good at taking social cues; he doesn’t read a room well and he tends to monologue and perseverate (to repeat himself long after the need has passed). He interprets figurative language as literal — remember that fork in the road in “The Muppet Movie?” He has a verbal tic he falls back on, “wokka-wokka.” And he hates to be separated from his hat for no obvious reason.

‘Autistic’ may not be the first descriptor that comes to mind when you think of Fozzie Bear. You would probably describe him as funny, loyal, lovable and tenacious before you would describe him as autistic. And that is exactly what children want, whether they are on the spectrum or not. When labels can serve children without defining them, they leave room for every child, and every Muppet, to be exactly who they are.”

Baird added that she discussed this with other families with kids on the spectrum, and they revealed that the exact same conversation took place in their household.

So here’s a question for our Mighty readers: Are there any other children’s television programs you think have characters on the autism spectrum?

3k
3k
26
TOPICS
, ,
JOIN THE CONVERSATION

When People Say 'You Look Tired'

1k
1k
0

lamar looking tired “You look tired.”

I don’t know if there’s ever a day I don’t hear that phrase at least once. Sometimes I hear it multiple times a day. You look tired. It used to offend me, but now I just respond with one simple answer: “I am tired.”

You see, I don’t just look tired, I am tired. I’m tired almost every time you see me. My face looks exhausted and my eyes are often red because I’m just so tired. But that’s not such a terrible thing. Let me explain why.

Living with autism spectrum disorder means I live life unfiltered. How I experience the world is completely different, and because of that it requires me to pour an incredible amount of energy into surviving each day.

My life is lived in high definition 1080p, all day every day. You may be in 480p, and that’s being generous. Comparatively, my sensory processing issues mean I see, hear, feel and sometimes smell the world in ways you don’t. Your brain probably filters out most of the noise, and visual distractions, and odd smells and odors because it’s just not important enough for you to have to worry about. In a lot of ways your brain manages all that for you, so you don’t have to be overwhelmed.

My brain… not so much. Every day I wake up I step onto the stage of the greatest production of all time. Every day it’s lights, camera, action as soon as my feet hit the floor. My life is the greatest unscripted show you’ve ever experienced; it’s bigger and brighter than Broadway.

Being autistic means my sound crew, lighting crew, stagehands, makeup crew and camera crew are all pretty much under-qualified and unskilled at their jobs. Every day I step onto the stage, the sound and lighting are so bad that it’s borderline obnoxious and at times just painful to listen to and look at. The lights are often too bright or too dim. The spotlight is never in the right place, the house lighting is terrible and all of that impacts my depth perception and facial recognition. Sometimes that’s why I have trouble recognizing people I’ve already met. This means I visually experience things quite differently than you do. It’s actually a lot of work, and sometimes it’s overwhelming.

So I don’t just look tired, I am tired.

My makeup team is usually missing in action. My face looks worn out because I’m unable to hide behind the masks and makeup so many other performers use to hide their true feelings. My face is naked; it says exactly what it’s feeling. It looks tired because it is tired.

I have no stagehands. My brain doesn’t come equip with people to help me understand cues. I don’t always know where to stand, when to enter the stage, when or where to exit the stage or even when to say my lines. I repeat myself a lot, but I didn’t get my script, so usually my one-act play turns into a unique combination of improv, reality TV and stand-up comedy that feels more like a variety show than a Broadway musical. All of this takes a ton of energy.

So I don’t just look tired, I am tired.

My camera crew is not a crew at all. I have one camera, which means I have only one angle, one shot and one view. I don’t get to see the world through multiple perspectives, and more often than not, you don’t get to see my performance from a different perspective either, so it’s hard for you to see me in a different light. You see someone who isn’t excited and doesn’t want to be here, but you only have one angle, one shot of my performance. There aren’t cameras to capture the other sides of me. Yes, it’s confusing for you, but it’s exhausting for me.

So I don’t just look tired, I am actually tired.

But that’s a good thing.

I’m tired because I’ve fought with the passion and the tenacity it takes to step out on that stage full of sensory overload and social anxiety and put on the performance of a lifetime.

I don’t look tired, I am tired but that’s good because I’m doing the heavy lifting. I’m tired because I choose to engage rather than retreat. I’m tired because I know I have something to offer the world, and to bless the world with my gifts I have to give it everything I have.

I don’t just look tired, I am tired, but that’s because I’ve found the courage to be more concerned about my assignment than I am about my appearance.

I’m autistic, and I have an assignment to show the world, to show autism parents, children and other autistic adults that we have a variety of gifts to give to the world. I show up in the work place and the market place, ready to perform no matter how exhausting it is and no matter how unable I am to hide my fatigue. I show up every day ready to perform because the world needs my voice. The world needs autistic voices. When our voice is absent, a void is present.

So yes, I look tired, and yes I am tired, but I’m OK with that because it means I’m leaving it all on the stage.

I may look tired, and I may actually be tired, but I am tired because I’ve also triumphed. I’ve made it through another performance, and I’m excited about doing it all over again tomorrow.

So kudus to all of my fellow autistic friends, parents, colleagues and companions. Keep going. Keeping pushing. Keep performing. The world needs it.

Break a leg,

Lamar

lamar looking up at the sky

1k
1k
0
TOPICS
,
JOIN THE CONVERSATION

How My Son With Autism Became the Hit of the Trick-or-Treating Scene

2k
2k
5

Some say the origin of “All Hallows’ Eve” (or Halloween, as we refer to it today) goes back to an ancient Celtic festival of Samhain. Celtic tribes believed that the spirits of the dead would come back to earth on October 31. In an attempt to scare the spirits away, the Celtic people dressed up in costumes.

Today, Halloween is more of an opportunity to become someone else. While the “fear factor” is still popular, so is the desire to dress up as your favorite movie character, sports hero, cartoon character or villain. One thing’s for sure — Halloween is a day to be different and sometimes express your love of your most favorite thing or person.

So what’s a mom to do when her son comes to her and announces he wants to be a ceiling fan for Halloween? 

My son, Thomas, has always loved ceiling fans. He’s been fascinated with them since he was a toddler. As he became older, it wasn’t just the spinning he enjoyed; he researched everything there is to know about them. By the time he was 6 or 7, he knew all the different brands and colors. He was a huge fan of the ceiling fan collectors on YouTube who share their mutual love of the hobby. He would even make his own videos about the ceiling fans in our house and the houses of our patient and understanding friends and neighbors. I can’t tell you how many times I’ve asked friends if they would mind Thomas taking a peek at their ceiling fans when we visited.

So when Thomas told me he wanted to be a ceiling fan for Halloween one year, I had to make it happen for him. My only obstacle was being the least crafty person I know. And there are no cheat sheet Google images or Pinterest pages dedicated to ceiling fan costumes I could copy from in order to create my design!    

So I did my best, and this is what we came up with!

We were the hit of trick-or-treating that year. Everyone stopped Thomas to ask him what he was, if they couldn’t already guess, and he proudly talked to each and every person about what kind of ceiling fan he was. It opened up a conversation for him with everyone. He was excited to talk to all our friends, neighbors and even strangers about his all-time favorite topic. And for me? I was just happy I could make it happen for him.

Halloween is a day to be different from our everyday selves, but what starts as an attempt to be different can sometimes make us all look the same. That Halloween we saw dozens of Batmans, Dorothys, SpongeBobs, pirates, football players and ghosts.

But this I know for sure. 

In our neighborhood that year, there was only one ceiling fan.

2k
2k
5
TOPICS
,
JOIN THE CONVERSATION

Real People. Real Stories.

8,000
CONTRIBUTORS
150 Million
READERS

We face disability, disease and mental illness together.