When We Revisited the Word 'Never' When It Comes to Our Daughter With Autism

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“There is nothing in the world so much like prayer as music is.” — William P. Merrill

Once, we didn’t know if she would ever utter a complete sentence.

Once, we couldn’t bring her into a room full of people and stimuli, knowing it would overwhelm her senses.

Once we didn’t know if she would be able to make and sustain friendships.

Once we didn’t know if she would ever reach the milestone of becoming a bat mitzvah.

Once we were afraid to hope too much, ask for too much, pray for too much.

Once it seemed that our faith would never truly belong to her.

Once we didn’t know that we could teach her to cut with a scissor, or make beautiful music on an instrument.

Once, the simple act of drinking from a straw seemed too much. The only songs we might hear were the rote melodies and words she mimicked, memorized from her favorite TV shows.

Once, we heard the word autism and for a brief moment, our world came to a standstill. But we loved her too much to remain in a place of helplessness. We owed her so much more than that.

So once, we fought for her. And she fought alongside us. We immersed her in therapies, and she displayed a fortitude and a perseverance that, in the company of that support, brought her forward, tiny step by tiny step.

Once, the world overwhelmed her. A clown, a bright gathering of balloons, the sounds of a crowded space. But we did not retreat. She allowed us to slowly expand her world, safely, with trust… inch by inch.

Once, she carved out an entryway into her faith, embracing it as her own, determined that she would have a place amongst her peers.

Once, we began letting go, allowing her to try, to stumble, to feel her way through, so she would know autism did not own her, it simply inhabited her.

Once… once we didn’t see her standing on the bimah, guitar in hand, surrounded by her peers, leading a congregation in prayer and song.

Once we didn’t see that smile, full of pride… her smile, our smiles.

Once, our hearts broke — sometimes they still do.

Autism has changed her journey. Not simply once, but forever. Once we didn’t know where that journey would take her. Today, we still don’t. So we take in the moments, always. And last night, as we watched a very special song leader, our hearts filled with pride. We turned to each other, my husband and I, and said, “Remember when we never thought this would be possible?”

Yael giving a speech
Deborah’s daughter, Yael.

Once the word “never” occupied a space too painful to bear. We tucked it away, choosing instead to focus on “maybe,” “perhaps,” “one day”… and on this Sabbath eve, we quietly revisited the word “never.”

Never underestimate her.

Never give up on her.

Never forget the quiet courage she displays each and every day.

Never be too afraid to hope, to dream.

Never stop giving her the tools, the chances, the opportunities.

And never forget the moments when we get to witness the incredible blessing of watching her do what once we thought could never be done.

In prayer, and in song, and in watching her — her love of music, her love of faith, her love of Jewish community, she shared with us a gift. It’s her gift.

And that we will never give up on.

Follow this journey on Reflecting Out Loud.

The Mighty is asking the following: What’s one thing you thought on the day of your or a loved one’s diagnosis that you later completely changed your mind about? 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 Submit a Story page for more about our submission guidelines.

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To Parents Who May Be Hesitant to Arrange Play Dates With Special Needs Families

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Dominic at least a few times a week will tell me, “Need to call Bella’s mom!” Who is Bella you may ask? Here is the answer to that question:
letter tiles that spell out Dominic is Bellas very best friend

A little background — I first met Bella shortly after Dominic’s first grand mal seizure. Dominic and I had just been to his follow-up doctor’s appointment after being in the pediatric emergency room at our local hospital. I was still a bit spaced out and I think still in shock from riding with Dominic in an ambulance. There’s nothing quite like having an ambulance come to your home, having the paramedics put your child on a stretcher and then go full speed with the sirens going.

His pediatrician had just told us we would need to go to a pediatric neurologist. We had stopped briefly in the dairy aisle at the grocery store to grab a gallon of milk, and I heard a voice behind us saying, “There’s Dominic!” I turned around and saw a young girl, Bella, and her mom, Kelle, walking towards us. I had no idea who they were.

dommiebella1
Dominic and Bella.

The first thing I noticed about Bella was that she was so happy to see Dominic. She had the biggest smile I had ever seen! Evidently, Dominic and Bella had met when they were in fifth grade together when he was mainstreamed into one of her classes. We chatted for a bit and what Kelle told me before we left floored me. She said, “I would love to get our children together and be in Dominic’s life however much you will let us!”

girl posing behind boy holding a heart-shaped Valentine's card
Dominic with Bella and her Valentine’s Day card.

Wow. Just wow. Do you know how long I had waited to have another mom ask me that? Dominic did have a bunch of play dates when he was about 2 or 2 and a half years old with another mom and her two kids. They pretty much ignored Dominic and played with his sister, Lauren. When Lauren was in school, I volunteered all the time. The few times I volunteered in Dominic’s classroom, he got really stressed out because he thought something was wrong. It can be very different when you have a child in a special education classroom.

About a month or so ago, Dominic went over to Bella’s house for his first ever play date without me hanging around. I was really apprehensive for him, because number one, he has had four seizures, and number two, I wasn’t sure how he would cope. Would he tell me to stay? Would he get upset when I left him there by himself?

Well, when we got to Bella’s house, he sat down at their kitchen table and made himself right at home. I said, “Bye, Dominic, I’m leaving!” He said, “Bye!” He didn’t get up or hug me goodbye. As I was driving back home, tears kept welling up in my eyes. I had so many emotions. Kelle knew instinctively as a mom I would be wondering how he was doing, so before me even asking, she sent me two videos and some pictures.

boys playing with a toy train set on the floor
Dominic playing with Kelle’s younger son.

Kelle has two other children (both boys), one older than Dominic and one younger. Dominic played trains with Kelle’s younger son. I had planned to come at 4 p.m. and pick Dominic up, but she said he wanted to stay longer. I didn’t want to impose, so I asked if that was OK with her, and she said it was. He had a fantastic time.

If I could give advice to a parent who may be hesitant or unsure of setting up a play date with a parent of a special needs child, just ask. I can tell you with certainty, because I have been there, it can be very isolating to be a special needs parent. You already have one thing in common with us: We are parents, too.

Thanks, Kelle, for making Dominic’s first play date so memorable. It’s really hard to put into words what you and your kids did and continue to do for our entire family. But, I will try: Thank you, thank you, thank you.

Follow this journey on Bountiful Plate.

The Mighty is asking its readers the following: Describe the moment a stranger — or someone you don’t know very well — showed you or a loved one incredible love. 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 Submit a Story page for more about our submission guidelines.

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Why I Mostly Write About Having Hope When It Comes to My Son's Autism

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A couple of months ago I wrote a piece about autism’s gifts for the Autism Speaks blog. As usual they posted the piece on their Facebook page as well, and comments followed. Most of them were positive. Many of the commenters shared their own experiences, citing the gifts they thought autism had brought to their families as well.

And there was one comment that just got to me.

“I would like to have an intelligent conversation where we can drop the mask of constantly being happy about this and talk about the things this has ruined for us as well. Mind you, I love my son and would never change him even given the chance. I just want to know that not all parents with children on the spectrum are walking robots forced to grin and bare it. I want to talk about us having mental breakdowns because of the isolation, I want to talk about the anger and hatred we feel because it genuinely sucks. Anybody can be the eternal optimist, and that’s fantastic. Where are the real parents that have issues like me?

Or am I just a sh*tty person because I fully understand that this isn’t all smiles, puzzle pieces and blue light bulbs?”**

I get it. I so, so, get it.

I often start my blog posts with a description of the early days with my son Justin, who is autistic. I write about the harsh realities of having a young child on an involved end of the spectrum. I share with my readers about the insomnia that dogged his days. I talk honestly about his aggression when he couldn’t make himself understood. I speak about how difficult life was for him before he could communicate with his PECS book, and later with his iPad.

I write about the challenges he faced.

I’ve walked the walk that many of you are going through now, watching your sons and daughters face challenges. I’ve struggled too (as has my husband), emotionally, physically and financially. There were days we were living hour to hour, wishing desperately for a magic pill that would make him happy.

And after years and years of challenges and pain, we’ve come through to the other side.

And that’s why I mostly write about having hope.

I will never tell another parent of an autistic child that things will “get better.” Nobody can promise you that, plus everyone’s definition of “better” is different.

But I will say this.

Carry hope with you that your child will feel better. Nurture that hope, breathe life into it, make it grow. I say this because a mom of an autistic child once told me a decade ago that each day I should find at least one bright moment and cling to it, hold it close, take it out and remember it at night no matter how challenging the day was. That advice helped me get through a year and a half of doing ABA therapy with my son six hours a day, five days a week. That wisdom helped push me to be a better teacher, practitioner and parent. That moment of remembrance would comfort me when comfort was not enough to diminish my son’s meltdowns.

That moment of hope would help get me through.

If someone had told me 10 years ago that my son would eventually eat more than one thing, sleep through the night, communicate with a technological device, use a few words on occasion, and most importantly, appear to be a predominantly happy child, I would not have believed it.

But today, after years of therapy, consistency, his own maturity and love, he is all of those things and more.

He seems to love his life. And we love him.

And sometimes a little hope can go a long, long, way.

**This passage has been slightly modified for clarity.

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 Submit a Story page for more about our submission guidelines.

Lead photo source: Thinkstock Images

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What the Education System Would Look Like for My Autistic Son in My 'Perfect World'

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If you’ve ever been to an Individualized Education Program (IEP) meeting, there’s a good chance you’ve seen how flawed our education system can be when it comes to our kids with autism. It could be a teacher who doesn’t want to accommodate your child’s extra needs. Or maybe your child doesn’t quite meet the criteria needed to get the extra help, even though they never quite hit the mark for their grade level.

My son will soon be 9, so we have had our fair share of IEP meetings over the years. We’ve had great teachers and we’ve had one who didn’t seem to want to put any extra effort into him. Unfortunately her lack of effort reflected greatly in his end of the year IEP; it was the first time he had ever failed all of his goals.

With the increasing number of children being diagnosed with autism, I feel like our education system needs to be reevaluated. In a perfect world, I believe all teachers would have experience with autistic kids. They would go out of their way to give a little extra time and help to those who needed it, whether they spend part of their time or all of their time in a general education classroom. For children like my own, there would be space available in the type of classroom that would fit his needs.

We are currently in the process of applying to get into an education resource center (ERC) classroom. Currently there are only about 15 spots available in the entire school district. If he doesn’t get accepted, he will continue to spend part of his time in learning resource center (LRC) and part time in a general education classroom, which is becoming harder and harder for him as he gets older. With such limited space, it could take years for him to be accepted. In the meantime, he may just fall farther and farther behind.

I know that none of these things can be changed overnight, but I feel as a community we desperately need to push for changes. We have to fight for our kids and make sure they are getting the best education they can. One they deserve. For the parent who doesn’t feel like their child is getting what they need, don’t be afraid to speak up. Don’t ever stop fighting for what you know they need. Don’t let anyone make you think you don’t know what’s best for you child. We are their biggest advocates, and we must never forget that.

mom and son making funny faces at the camera
Ashley and her son.

The Mighty is asking the following: Share with us an unexpected moment with a teacher, parent or student during your (or your loved one’s) school year. 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 Submit a Story page for more about our submission guidelines.

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When We Took Our Daughter to an Autism-Friendly Ballet Show

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I have always enjoyed looking at the photos of my friends who are able to take their typically developing children to see and enjoy the performing arts, especially the ballet.

As much as my husband John and I try to enrich our daughter Samantha’s life with several different activities, this isn’t something we ever felt like we could do for her until last year when we took her to see the Houston Ballet Academy’s autism-friendly adaptive performance of “My First Ballet: Coppélia.”

Monica McDivitt’s daughter, Samantha, with ballet dancers.

Samantha is 15 years old and was born with a chromosome 18q deletion, severe hearing impairment, autism and severe cognitive and developmental delays. She loves costumes and tights, so I decided to dress her like a ballerina for this event. Plus, I knew this was a way she would recognize something special was about to happen.

We were running late (as usual), but we made it to the Houston Ballet Center for Dance, picked up our tickets at will call and then we were kindly escorted to the front row.

Shortly, thereafter, the stage lights dimmed and the ballet performance began. Samantha looked around, smiled, giggled, babbled, flapped her hands, blew raspberries and kicked her legs with much delight. I was at ease because I knew she could be herself and no one would judge her, stare rudely or feel bothered by her behaviors.

I hadn’t been to a Houston Ballet performance in a very long time, so as it began, I was overcome by emotion, and a tear rolled down my face. I was happy and grateful to have this much-needed outing, and I felt a deep admiration for the ballerinas who were dancing so beautifully on stage for Sam and the other children, young adults and their families.

Monica McDivitt’s daughter, Samantha, with ballet dancers.

Although there was a moment when I couldn’t help but selfishly wonder what it would be like to have my sweet Sam wear their gorgeous costumes and dance just like them, I overcame that feeling, held Sam’s hand, watched her smile and appreciated the fact she was able to enjoy the beauty and expressiveness of the ballet just like everyone else.

Of course, this wouldn’t have happened without knowing my sweet friend, Kim Stafford, a former Houston Ballet ballerina who helped to spearhead this event. You see, Kim’s 10-year-old son Jude has autism. After she took him to adaptive shows for “The Lion King” and the Rockettes and discovered his excitement and fondness for the performers, she began to think, “Why not create adapted performances that allow a judgment-free trip to the ballet?”

So she did!

To this day our family is still thankful for the lovely one-hour performance of the story of Swanhilde and Franz and the freedom for our Sam to joyfully babble, shriek, hand flap, kick and blow raspberries at her first ballet!

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? 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 Submit a Story page for more about our submission guidelines.

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When I Told My Co-Worker My Son Has Autism

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Today a co-worker visited my office. She hadn’t stopped by in a while. She was looking around and asked if I had new pictures of my son. Then she said, “He must be talking a lot now.”

So here’s where I get stuck. What should I say? If I say no, he doesn’t talk, I likely have to explain my son’s diagnosis. If I say yes and lie, the conversation will keep moving forward, probably to the weather.

Elizabeth Terrazas’s son.
Elizabeth’s son.

The thing is, I don’t mind explaining my son’s diagnosis. I actually love to talk about my son. I feel my job is to promote awareness and, hopefully, create a world of acceptance for him.

However, I realize not everyone may want to learn about autism. I understand not everyone may be comfortable when it comes to autism. So I always fight with myself when I’m in this kind of situation. Should I say something? Or should I dismiss it and move on?

I’m in these kinds of situations all the time. People tell me, “He must be so excited for Christmas!” or “He most love to play with cars!” I don’t want to make people uncomfortable. But in the end, depending on the situation, I have to make a choice.

Today, I chose to be honest. I chose to let my co-worker know my son doesn’t talk. My son doesn’t play with cars, but he prefers puzzles. My son isn’t fazed by Christmas. My son has autism.

These are the phases I usually see: 1) They’re shocked. Obviously they weren’t expecting this answer. 2) Then they regain their composure. 3) They try to make me feel better and say things like, “He will be fine” or “You will see.” And sometimes they say they know someone who knows someone with autism. During my short two-year experience, I have always received a lot of support.

I’m glad I didn’t lie today. I’m glad I spoke about my son and spread awareness. She kept saying “artistic” instead of “autistic.” She was very sweet. I also know that the time will come when the opposite will happen — when “they” might not want to know.

I read so many other bloggers’ stories about their experiences with people’s lack of empathy and understanding. Until then, please know that if I do open up to you, it’s me putting my heart out there when I say, “My son has autism.” Please be kind.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? 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 Submit a Story page for more about our submission guidelines.

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