When a Little Girl at the Pool Realized My Son Has Autism

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EMTs, firefighters and police officers all have something in common. When crisis arrives and everyone’s running away from it, they’re the ones running towards it. They’re the first on the scene to help, to rescue and to serve. In my world, the term “first responders” means something a little different.

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The first year after my son’s autism diagnosis — now five years ago — was by far the hardest. The news hit us like a mack truck. We were lost, confused and in many ways, in a state of grieving the “what could’ve been.” But probably more than anything, I felt alone. I’ll never forget our first responder, “Dana.” She was the first one to reach out. She has a son with autism, and she told us the first year would be the roughest… but she also told us things would get better. She said we’d find our therapists (we did). She said we’d find a school (we did). She said we’d find our “village”(we did). She said we’d find our way (we did). She was the first of our “first responders.” I’d later meet all the aforementioned amazing people who would also become first responders. The ones who reached out. The ones who came to help. The ones who came to “rescue.” The ones who’d devoted their lives to serve kiddos and families like ours. “Dana.” She was the first of my first responders. That’s something you never forget. That’s something I hope one day to pay forward to someone else in need. I hope one day I can be someone’s first responder.

Spring has sprung, and the weather is getting warm again. I can’t help but think about summer. I can’t help but think about the little girl named “Jade.” Last summer we were living in an apartment with a community pool. We would venture out early to avoid the extreme heat, the crowds and to be honest, yes, to avoid the stares. One time a gentleman (term used loosely here), after looking at my son, motioned to his wife that circular motion between his ear and head. You know, the one people use to indicate someone’s “crazy.” Yeah, that happened. People aren’t always kind. That day, as we walked back towards the apartment, I contemplated all the things I could’ve and should’ve said. And I may have possibly considered running him over with my Prius. OK, maybe not run over but at least tap him with my front bumper (That’ll teach him!) But instead of doing any of that, I went home and I cried, and then I cried some more. I avoided the pool after that as much as I could. My son stims… and he stims a lot. Finger-flicking, hand-flapping and squealing. Behavior that makes him appear “weird” to some people. Kids never initiate play with him, and typically when one has, as soon as they realize he’s different, they walk away. They always walk away.

Except this one time…

son happily playing in the pool I was sitting by the pool watching my son splashing and squealing, doing his stimmy thing, happy as a clam.  In walks “Jade,” somewhere between 7-8 years old, blond hair, freckles across her nose, all 50 pounds of her, if that. She spots him by himself and proceeds to initiate play. She talks, asks him questions and as usual, he doesn’t respond. About this time, I fully expect her to walk away, just like all the others had before her, but she doesn’t. She doesn’t walk away. Instead, she looks at me and asks, “Does he talk?” I respond, “No, he does not.” She asks, “Does he have autism?” I’m not going to lie here, the question stunned me a little. I wasn’t entirely sure how to explain autism to a girl so young. Either way, my response was short and simple, “Yes, he does.”  She turns around and changes her approach with him. Instead of asking him questions, she starts telling him what to do. “Here, get on the float, I’ll pull you,” “I’ll throw the ball, and you catch, OK?” Whoa! Was I really seeing what I was seeing? Was my son playing? Did my son finally have a friend? For about 20 minutes, until the little girl had to go, I got to watch two kids laughing and playing together, and for the first time ever, one of them was mine. Thank God I had sunglasses on because I was a mess. A blubbery, emotional mess at what I’d just witnessed.  

Had I not ventured back to the pool because I was too scared to have another encounter like the one with the “gentleman,” I would’ve missed out on two of the remarkable things. The first one was this: in about 20 minutes, the little girl named Jade gave me something I’d waited six years to see. My son, mine, play with a friend! And the second thing I witnessed, well that was as equally remarkable: That warm summer day, I got to see a first responder being born. And that, my friends, is something you never forget. 

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An Apology to the Therapist Who Urged Me to Get a Diagnosis

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1517455_476906429114023_765835911775529869_n How do I sum up and explain what it’s been like in our house the past few months? Some people have asked questions, some don’t know what to say and some are still in denial. It all started when Zoey was around 14 months old. She stopped answering to her name, even when we yelled it as loud as possible.

She also stopped making eye contact. I used to light up when I’d call her name and she’d turn to look at me with her big beautiful smile. She started pulling away from us, not wanting to be picked up or held. I couldn’t just walk over to my baby and hug and kiss her like I’d done many times in the past.

Zoey isn’t my first child. She has a sister 16 months older than her. Yes, I have a 3-year-old and a 2-year-old… toddlers, gotta love em! I also went to school for Early Childhood Education. I’ve been around children my whole life. I knew Zoey was not hitting milestones, and her speech was delayed. My brain knew what my heart didn’t want to know. At her 18-month checkup, I mentioned it to her pediatrician. I watched Zoey’s doctor call out her name multiple times in different tones, and my child didn’t flinch.

What followed next were two hearing tests — hearing was fine both times. It was at that point I heard, “You should have a speech evaluation done.” OK.

The Early Intervention team came to our house — a physical therapist and an early education specialist. I sat down on the floor with these two women and Zoey while my husband occupied our 3-year-old. I was asked many questions, and I sat there as they tried to involve Zoey in play and imitation. I watched as they tried to get her to make eye contact and engage with them. After the three-hour eval was done, I sat impatiently waiting for what they had to say to me about my baby. They talked about fine and gross motor skills, but that’s not what I was on the edge of my seat about. Yes, she was delayed a bit in both.

I waited and watched as this professional sat on my floor and looked at her paper, reading what she’d evaluated from being with my child. “She is a beautiful happy girl,” and then I heard a lot of things I tuned out because I could feel it in my gut, my heart and I could see it written on this woman’s face. Then the words came out. “She has the communication skills of a 6 to 8-month-old.” Zoey was 19 months old at that time.

I could feel my heart drop from my chest as I cried. Not just the teary-eyed cries you get when you watch a sad movie — really big tears dropping from my eyes like rain, making my face and shirt wet. I looked at the woman and said, “I’m so sorry… I know that must have been really hard to tell me, I’m sorry, so sorry.” I got up and walked to get a tissue for my face, and I heard her whisper to the other therapist, “That was really hard.” “Yes,” the other woman said, “but you did great.”

You see, no one wants to give or get news like that.

When we finally did see the pediatric neurologist, we had the diagnosis that day.

Follow this journey on Melissa’s Facebook page.

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6 Reasons I Have to Thank Autism

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Hi again, autism.

Bet you never thought someone would start a letter to you with something that sounds like a greeting to an old friend. But I guess that’s kind of what you are to me by now. You’re like that friend who drives you crazy, and you try to get to rid of, but in the end you always reconcile and move on together. Now, I don’t ever plan on “reconciling,” per say, but I do plan on finding a way to live with you.

However, autism, don’t think this means I like you. If I could get you to go and stay away, I would. Not because I don’t like my life with you but because of the way people see my life with you. If I could, I would get you to leave, even just for a day, so I can experience being a normal kid. But I get it. I get there is no way that’s going to happen, and I finally understand why it’s not always a bad thing that it won’t.

I guess I do owe you some thanks, autism.  So this is it:

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1. Thank you for letting me see the world in a way a lot of 14-year-olds can’t.

2.Thank you for letting me realize how grateful I should be to my friends.

3. Thank you for showing me how much people will give up for those they care about.

4. Thank you for showing me some of the purest kindness in the world.

5. Thank you for showing me I am strong.

6. And finally, thank you for letting me see how hard my brother’s world is so I can finally learn to understand him a little more.

But don’t forget this, autism — If I ever were to find a way to make his life and mine even just a little more free from your grasp, I would. But maybe, if you’re around to stay, I can use the way I see things now to teach other people how to do the same.

And just so you know, autism, I won’t let you take my brother either. John will in the end be able to have control over you. Maybe he has a hard time right now, but in the end he will always be better then you.

So for now, autism, I will greet you as an old, wise friend with an important lesson to teach. And  I will listen, autism, till a time you have nothing more to say. So thank you, autism, but if you really cared you would give my brother something. Even just a little something.

Sincerely,

Your old friend

A version of this post originally appeared on Life As An Autistic Teenager.

For all of March, The Mighty is asking its readers the following: If you could write a letter to the disability or disease you (or a loved one) face, what would you say to it? 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.

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My Son With Autism May Never Move Out

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There are things in a parent’s life that gets taken for granted, including the fact that their children will grow up, get educated, get jobs and move out.

But I’ve come to terms with the fact my son will probably never leave home.

At the moment, he’s 5 years old, on the autism spectrum, nonverbal and behind in most of his developments. He needs 24/7 support and care. He’s hyposensitive and demands large amounts of physical stimulation to get any form of satisfaction.

Spinning.

Jumping — on beds, on trampolines, on me.

Dancing (mostly by being held and bounced).

Tickling (hard enough to bruise any other child).

Eating (everything from ice cream to mud).

Making loud noises.

He has no concept of personal safety, and this makes the outside world (also the safety of home) a dangerous place. He will try to touch flames, swallow what looks interesting, climb up anything, run and chase something that catches his eye (cats, sweet wrappers, people, etc.). When upset, he will fall to the floor and roll screaming. This has happened on a main road before.

He’s loving to me and his immediate family. He will hold our hands when out and be led safely. He feels comfortable with people he trusts and knows, but he can also take a shine to strangers (this is a bit worrying).

aiden on log

He thrives on routine, and if that routine is broken, chaos will ensue. If his school bus is two minutes late, he will scream and shout and run up and down the lounge, banging himself into walls and windows to show he’s distressed.

All of this and many more incidents have made me and my wife have the discussion: “What will we do if he never improves?”

This was a short and easy question to answer.

We both agree he’s our son, we love him and we will always be there and do what’s needed for him. The thought of putting him into care is something we both are against (even as he grows older and gets stronger). We will just adapt to his needs as they come. We’ve looked and researched as much about autism as we can, but living through it has been more educational than any book can be. And from what we’ve researched, for us, the only conclusion is that he will be better off living with us.

I’ve long since thrown away the ideas of a relaxed retirement and am now planning for how best to serve my son’s needs. I see articles from parents saying how hard it is to let their child go, but I could not see myself doing this. Yes, I know things will get harder, but my stubborn mindset is fixed. I may be overprotective, naive and scared. But that’s how I feel.

I will do anything to keep my family happy. My son’s future is not yet written, and he could take massive leaps forward, but if he doesn’t then I’m ready. I will always be ready. That’s my mantra.

family photo

This post originally appeared on Autism From a Dad’s Eye View.

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A Letter to My Son With Autism, to Be Delivered After I’m Gone

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Dear Justin,

I trust this letter finds you happy and healthy. I hope by the time you receive this I will have been gone for many decades, and that this last missive in your mother’s attempts to parent you from beyond the grave will be delivered to you when you are old, but still well. Forgive me, but really, why should death preclude me from continuing to control everything?

You may have been wondering all of these years why your brother periodically reads passages to you from me. I wrote all of these letters instead of videotaping myself because I feared seeing me would confuse you, perhaps incite you to ask for me post-mortem, the thought of which I emotionally cannot bear.

I wrote the lion’s share of them before I grew truly ancient, because although most of your great-grandparents lived to be almost obscene ages, you never know when it will be your time. I didn’t want to be caught unprepared.

Planning was your mother’s forte.

It was my fondest desire prior to relinquishing my physical self to the mortal world that your last decades on this earth would be productive, safe and engaged. I am certain your little brother, whom I have pestered innumerable times over the last 20 years to watch over you, will be your stalwart companion, your protector, your friend. You two have always been close in your own unique fashion, a fact I attribute far more to your inherent interest in one another’s well-being rather than any scenario your father and I were able to construct over your collective childhood.

For over 40 years I have watched him teach you, defend you when necessary, and stand up to you when the situation called for it as well. We tried to promote a bond between you, to make Zachary see the gifts that came into his life as a result of your autism and his own far outweighed the burdens inevitably resulting from it. He has assured me many times that in its own way autism enriched his experiences, imbued him with patience and a facility for compassion he would not have possessed otherwise.

It is my most profound hope that my love for you, which began long before your cells divided and multiplied in the floating sanctuary of your personal test tube, was passed down to you as well. I hope the strength of my commitment to you became mired in your DNA, a permanent fixture in your cells, a cocoon within which to wrap yourself since I’ve been gone.

I hope you have only remembered the love we had for one another, the unbreakable connection that with luck has sustained you and enveloped you when you were sad, these decades past. I choose to believe in some fashion I have remained with you, that our bond to each other has transcended death.

So, as I’m writing this last love letter to you I will have to summon some modicum of faith, permit myself to trust that your middle-aged years, your descent into the realm of the elderly, and your arrival there have been for the most part a journey encompassed by hard work, various social opportunities, and frequent visits from those who love you still.

I have requested your brother leave these letters bound in a book for your caretakers to peruse, with each entry marking a new passage in your life, an acknowledgement you yourself are moving closer to your own final moments. I hope the people who have cared for you, fed you, clothed and housed you, and enjoyed you to some degree, have read these on occasion. Photos tell a story, but nothing paints a picture more illuminating than words.

If my wish came true, and in their few idle moments they were able to reflect upon these letters I have left for you as solace and succor in your remaining years, I hope those who live with you will understand this. That before them is an old man yes, one who can intimate an entire conversation with his eyes, but cannot emit one from his mouth. That this elderly gentleman is quite contrary at times, but can be reasoned with, does comprehend the subtleties of demand and request, and will comply in his own time.

I hope they fathom your innate intelligence, push you always to accomplish more, solicit from you your best self in all domains. You are capable of so much. I hope that fact has been recognized, and honored.

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Finally, my deepest desire in creating this legacy of your life is that your caregivers will be cognizant of how loving you are and were, how affection was always a staple of your personality. I hope my words will convey to them how demonstrating your love for those in your inner circle dominated your days. I wish them to see once you were an adorable child who always eventually conquered his anger and his incompatibility with the typical world with a mighty hug.

I hope my anecdotes of your childhood, the extra time I had to build into our morning routine for your embraces, the way your arms would encircle me at night as I sang your baby song to you and you patted my shoulder in appreciation, will stay forefront in their minds even when you are difficult. I pray they will see you as a whole being, an entity capable of the full range of human emotion.

I hope they will have loved you, even a little.

I have long ago gone into my “good night,” and I wish you safe passage into yours. I will say to you what I whispered in your ear every evening I cared for you, whether you were infant, teen, or grown man. I leave you with this, my forever-sweet son.

Sleep well, Justin. I love you with all of my heart and all of my soul. As always, you are my good boy.

Rest.

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How I’m Learning to Handle My Son Being Left Out

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It’s a gorgeous spring day here in Northeastern Pennsylvania. I stand in my kitchen in front of the window, preparing baked potatoes for dinner. I gaze out the window in a bit of a daze. The time change is still wreaking havoc on mine and Liam’s sleep schedule.

I see all the neighborhood kids outside playing. Smiling. Yelling. Laughing. Playing together and having a blast. My heart sinks. My son isn’t outside having fun. He hasn’t been asked to take part in the games being played. He sits in the other room on his computer. Googling and reading about edible and non-edible plants.

I feel my eyes begin to swell with tears, and I move my work further down the counter. This way, I can’t stare out the window. In that moment, rational thought takes hold. Liam is happy. He’s doing something he likes, and he’s having fun. He’s also learning, and it’s not forced learning. So why am I so sad?

I enjoy time to myself. I would much rather be alone with a good book or creating something than to be outside with a bunch of people, wondering when I should speak or fearing I may cut someone off unintentionally.

I think sometimes, as parents, we see what all the other kids are doing, and we long for our children to be taking part in that too. That doesn’t always make them happy.

Yes, there are times when Liam longs to be included, and that is truly heartbreaking. But in moments like this, when he’s perfectly happy being himself and doing his own thing, why do I long for him to be included, where he doesn’t care to be?

Sometimes I think we need to step back. We need to assess the situation, and we need to think. Is our child happy? Does he/she care that they are alone? Why do I care? If my child doesn’t care, then neither should I.

So I asked him if he wanted to go outside and play. His answer? “No, Mama! I’m learning about plants here!”

Just yesterday as we came into the neighborhood on our way home from town, there were kids playing outside. Liam commented nonchalantly, “Now that all these kids don’t like me or are mad at me, they don’t ask me to play. But that’s OK. I don’t have to worry about anybody bein’ mean to me.”

From the mouths of babes, folks. Sometimes, the best advice comes from the mouths of babes.

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