When I Told My Autistic Child She Couldn’t Bring Home All of the Nursery’s Flowers

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Earlier on this week I decided to take my girls to the local nursery to buy some potted flowers to plant in our front garden, to add some color. One of my daughters, who is autistic, came along with me excitedly; she loves the nursery. We walked through the aisles, and she was in awe of all the color and all the different variations of plants that there were to look at.

The deal we agreed to was: We could pick one color each and one plant each. She wanted pink. So she went about finding some pink flowers to take home and plant, while I grabbed a steel trolley to put our plants in. After spending a lot of time looking at each pink plant she could find and weighing up which one she wanted more, she suddenly began crying. Because although she had picked out one plant she wanted, she was devastated at having to leave all the other pink ones behind because she didn’t want them to feel like no one wanted them.

I tried to persuade her into the checkout area, but she began to cry even harder shouting, “But they’re all sad. They want to come home, too! I don’t want to leave them. They need to find a home! We have to take them all! They’re beautiful, too!”

We had a discussion there about how they were waiting for their homes and how our garden simply couldn’t fit them all, and although she didn’t seem totally convinced and begged me to bring a few more “pink flower babies” home — she calmed. She calmed, that is, until after I walked to the car with her and her baby sister on my back, buckled her into her carseat and started the car… and there she sobbed with her head in her hands and real tears streaming down her face the whole way home.

She was crying for the leftover pink flowers that would be left all alone, left without homes to live in, cold and scared.

I shared this story about my daughter and her pink flowers because I want to challenge what I’ve found to be a largely-held (unfounded) myth that children with autism often do not have empathy. Because for our family and many others I know, this is not the case. In fact, I would go so far as to say the opposite is true: Our children feel so greatly, and so very deeply beyond our comprehension.

rows of light pink, dark pink and red flowers

Follow this journey on GirlTribe.

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] 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 Other Parents Stop Making Play Dates With My Son With Autism

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The first time it was a shock. Casual “we’re too busy” replies to invitations, the realization that it had been weeks since we’d seen our friends, and then months. I went over it in my head — had I said something wrong? Were they just really busy? I didn’t want to jump to conclusions, but eventually the conclusion kind of jumped on me, like a rush of cold water. It may be my son. They didn’t want their kid hanging out with my kid. My kid, who hoarded toys and already had the rules for games worked out. My kid, who so desperately wanted to play and just needed time to figure it out, to transition between what he imagined and the reality. It took silence for me to get it, no longer an empty excuse at the end of the line, just silence. But get it I did, and gradually my son stopped asking for his friend, stopped putting aside toys and planning trips to the park.

I cried, for my boy who had experienced isolation at the tender age of 3. For myself, who had previously believed that when people said “It’s OK” they meant it. For the loss of a friendship I had relied on and valued. We were a bit bruised, but we threw ourselves into finding new friends with open hearts.

The second time was rage — white-knuckled rage and carefully composed text messages while we processed what was happening. All the things we wanted and needed desperately to say, and yet couldn’t. The message we never sent is still on the tips of my fingers when I remember the accusations. When you make decisions about whom your children can and can’t play with, other people suffer. We all suffer.

If it happens a third time, then I’ll know what to say: Trust your child; they have chosen to play with my kid for a reason. They likely see something — a spark, a kindred spirit, an appreciation of difference, and they appear to like it. Yes, it can be complicated. But trust your child, let them find the ways to make this friendship work, support it like you would any other, and above all, don’t be scared. Don’t be afraid of talking to us, don’t be afraid of our son.

I believe if you want your children to grow up to be genuine people who accept and embrace diversity in all its forms — then I feel they need these experiences. They need to know how to treat people with disabilities as people; they need to become good at finding the commonalities rather than the differences. This may not be easy, but changing the world rarely is. I’d say give your child the gift of many different friendships with many different people. Let them play, whatever that looks like.

I believe your children need my child. They need his boldness and his humor. They need his excitement about hydraulics and they need to see him racing around outside before he sits down to write. I feel they need him as a valuable member of society, a classmate, and as a friend. He has so much to offer. Your child sees that; trust them and eventually you may see it, too.

Follow this journey on Playing With Fireworks.

The Mighty is asking the following: Describe a moment you were met with 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 Submit a Story page for more about our submission guidelines.

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To the Teen on the Autism Spectrum Worried About Your Future

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Dear younger me,

I have so much to tell you about the future. I know that now your life is difficult. You feel you cannot share your feelings with anyone; you think nobody would understand. I know how you view yourself — filled with self-hate and judgment — and how you are victim to so many people: bullies, abusers and those who apparently hate you for no reason at all. I know these things because I have endured them, seen them through your eyes. But now I can see you through 30 more years of experience. I know who you become as an adult, and it will surprise you.

At 42 years old you are the same person but also quite different.

All those horrors you endured and continue to endure lead to wisdom, a strong will and enough resilience to deal with almost anything. You will come to embrace your qualities for the gift they are. You feel hated because of perceived differences. And you are correct in thinking it is unfair and cruel. You don’t deserve it. Nobody deserves that kind of abuse and discrimination. I have a saying I sometimes use — the most amazing adults I know were often not considered cool in school.

You have become an exceptionally cool adult. You are an author of three published books, you have an amazing job and you travel all over the country speaking about your experiences — people pay you to do this. The reason you write and speak is that you and I have a thing called Asperger’s syndrome. It is on the autism spectrum. Don’t be horrified though. Autistic people are often incredible.

I know how you feel like you have no friends and nobody to understand you, but now you have many friends — mostly autistic women like you. You and your friends get each other. Your social life now is everything you could have wished for at your age.

Another thing to know about autism is that there is a huge autistic community and groups of like-minded people who you will meet and interact with when you are older. This autistic community is where you will feel safest and where you will belong.

When you know about autism you will know the kinds of thoughts and behaviors you have are not “weird” or wrong. I know you are incredibly interested in politics at this time in your life and nobody wants to talk about it with you despite the fact it is the only thing which makes you happy. Most autistic people have these sorts of passionate interests. They are nothing to be ashamed of. In fact many autistic people make a career out of their passionate interests. A number of professors at university are on the autism spectrum, and their passionate interest is their area of academic expertise.

And I know you see yourself as “wrong” or “broken.” You are neither of those things. You are your own unique, perfect, autistic self, and that is a good thing to be. You do need additional help with some things. and there are things you won’t be able to do. but actually your autistic characteristics tend to be more of a positive than a negative.

School bullies are not such an accurate source of information about yourself. Often their behavior is in response to jealousy or their own feelings of inadequacy. Please don’t listen to them, and don’t let their attitudes about you determine how you see yourself.

You really are one of a kind. Your difference is part of what makes you amazing. And you are a great, strong, kind person, and you will learn to know that. Go well as I know you shall.

Yours in the promise of a better world,

The future you

The Mighty is asking the following: Write a letter to your teenaged self when you were struggling to accept your differences. 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 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.

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