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I Learned to Celebrate Small Moments After My Daughter’s Autism Diagnosis

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I didn’t even know that I took the little things for granted. After all, I knew what it was like to have a hard life. My two adorable children were already living a life 100 percent more stable than mine. They weren’t sleeping in cars in the winter or eating every three days. So, of course, I thought I was a good mom. But there were so many things that I was about to learn on our journey, and thank God that I learned them before I missed more.

You see, our journey into parenthood wasn’t too bad.  We had our first adorable red-headed daughter later in life. I was already 28. She was cute. She was smart. She was funny. Everything about her being in our life was amazing. 

Then a nearly four years later, we added another sweet angel to our lives. Who knew we would have another red-headed adorable child — this time a son. And, well, he was cute. He was smart. He was funny. He hit all his milestones and did everything like his big sister — right on time and sometimes early. That’s what kids do. They grow up, learn to crawl, learn to walk. So what was the big deal? I didn’t take first haircut photos or celebrate the tooth fairy in grandiose style like some of my peers. I always said it was because I was practical. What’s all the fuss about?

Then we got our third miracle. She wasn’t like the others. So small and fragile. Long dark brown hair. A quiet baby. Honestly, I was relieved. One of the children was more like their dad, the strong silent type. At least that’s how I began the rationalizations. 

Well, milestones started getting missed. But hey, that happens right? And then the doctor started wanting very specific dates about when she crawled, when she walked, when she said her first word. But, you see, why would I track such things? Why would I celebrate such things because they just happen, right? 

Well, no. No, they don’t always just happen. And nine and half months pregnant with our fourth miracle, I sat in a room as they analyzed what my daughter could do versus what she should do, and it became very apparent our daughter wasn’t hitting milestones. I mean she turned 2 years old a month before the appointment, and she had never said Mommy. I tried not to take it personally. All kids get there in their own time. She didn’t say Daddy, either. Well, frankly, she didn’t say much. She counted all the time, in English, Spanish, Korean, Mandarin and Portuguese. Yet, she didn’t say Mommy. But she will get there in her own time, right?

The woman doing the exam was very sweet with our daughter. She was loving and patient as she tried to get her to do things I knew she could not do. Patient and kind as she asked me the questions I didn’t have the answers for while I rubbed my belly hoping the new arrival would come soon. 

Then this woman who had all the compassion in the world for my dear daughter looked at me and said plainly, “Your daughter is at least moderately autistic.”

Wow. Just like that, huh? Just like that our whole lives change? 

Then I did the thing no parent should ever do — I Googled “autism.” I Googled it because I had never heard of it before. I didn’t know anyone that was autistic or had an autistic child.

And, by golly, just don’t do that to yourself. I read link after link and study after study on how my miracle was never going to do this and never going to do that. I read page after page of stories about how my child would be treated by others. I read page after page of all the various early intervention options.

I cried. 

I read about all the milestones my daughter wouldn’t hit. All the milestones that I never celebrated with my first two children. I read more about parenting in those first months after her diagnosis than I had ever read in the first six years of being a parent.

There is a silver lining to this story, though. While I beat myself up over all the things I hadn’t celebrated with my other children, I realized the amazing blessing I had been given. While learning to break down tasks into the smaller steps my daughter needed to learn her way, I started to celebrate small moments. The moments in time, not just the milestones.

I began to be more aware of the true miracles that happened to my children each day. I started to celebrate. Celebrate all of my children. Celebrate the lost tooth — all of them. Celebrate drinking from a straw and then a glass. I was able to celebrate things much smaller than crawling and walking. My life became so much fuller. 

On August 8, 2013, my dear daughter was given an autism diagnosis. Yes, this day changed our lives, but this day also gave me the tools to help my sweet angel to be the best her she can be. And it gave me the tools to be the best mom I could be — to all my children. 

Autism allowed me to learn to celebrate life because life is a miracle. All lives are miracles. I take a few more pictures now. I give a million more hugs, and say “I love you” a billion times a day. 

I learned to celebrate the “cans” and break the “can’ts” into smaller chunks until they become cans. While I do not wish anyone to have this be the catalyst for change in their thinking, I wouldn’t change my sweet angel for anything. She has autism. Without it, she is not her. Without it, we are not the family we are now. Without it, I would have kept missing the everyday miracles in my life.

Autism didn’t end our lives. It was just the beginning of a new path on our family’s journey. I intend to enjoy the ride as best I can. 

Lead photo source: Thinkstock Images

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The Secret My Son's Autism Diagnosis Revealed About My Life

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In this wild thing called life, I’ve come to know that overcoming is becoming. But to overcome anything, we must first invite it in for tea. If we want to experience a truly authentic life, we must be able to look into the crevices of our heart and soul and lovingly embrace every facet of our being, the light and the dark. Which leads to the question, why would one want to live an authentic life? I know I have asked myself that question on several occasions.

To me, living an authentic life is being the same person you are when you’re alone as you are when with family, friends, acquaintances and in public. It’s being transparent about your needs without expecting others to fulfill them. It’s owning your process and being the driver in your life. I believe in being dedicated and committed to always being the best version of ourselves, and waking up every day with the intention of living a life grounded in gratitude and inspired by something bigger than ourselves. Authenticity is about sharing our life experiences, not for the reactions or responses of others, but to create a space for others to embrace a part of themselves they may not have otherwise.

My childhood was nothing like the picture-perfect experience that was portrayed to the outside world. I felt like I was always living a double existence –-the one I experienced inside and the one I struggled and worked so hard to show on the outside. I always felt very different from others, and remember telling my mom on countless occasions that I felt like I didn’t belong, that something was wrong with me. Before I could articulate it to her, however, my mom had already endured years of searching –- asking for guidance, answers and help, always being told it was a phase and would most likely pass. Her maiden voyage with parenting found her with a child who was fully conversant with appropriate grammar, inflection and facial expressions at 10 months, well before she was even walking. By the age of 5 my mom had me evaluated by a developmental child psychologist because she didn’t know how to parent a child who could outwit and outsmart her, but freaked out over tags in her clothing, only wore specific socks inside certain shoes, refused to eat anything other than Cheerios and needed it to be very quiet almost all the time.

Thankfully my parents poured belief, love and confidence in me all day every day –- without them I have no doubt I would not be where I am today. But I still felt lost, scared, angry, terribly sad and extremely frustrated. I was bullied throughout my entire school career, straight through college –-physically pushed around, harassed and told everything from “You’re so weird, no wonder you have no friends” to “What’s wrong with you?” “You make things so hard,” “Stop being so dramatic,” and “I’ve never known anyone so needy.” Even various professionals I sought guidance and validation from would say things like “You will never reach your fullest potential,” “Your anxiety will always limit you,” and “it’s probably best for you to settle.” I listened to what everyone else had to say for so long, I started to believe it must be true. I compared myself to others and judged myself harshly. I started to see myself as weak and incapable, a burden to those who cared for me. There were times in my life when I thought it would be best if I was no longer alive.

Years passed, I got married and along came Myles, my son, who launched me into my parenting experience and way outside my comfort zone. I found myself a parent to a child with significant special needs overnight. I was lost, scared and grieving. It was not a loving invitation into this new life, a soft nudge or even a little push –– I felt as though my life as I had known it had ended. It threw me onto a path I walked without knowing where I was going or how I was going to get there. All I knew was that there had to be a better way.

It often seems like the most painful experiences end up being our greatest teachers. This was no exception, and in retrospect was exactly what I never knew I needed in life and love, what I like to call my rebirth or awakening. Along this journey I have discovered ways to revolutionize our health, mentally and physically, changing the way we feel and allowing ourselves to become more in tune with what makes us tick. I have learned more about myself in these past three years than I have in the 30 before.

As I navigated our path with Myles and autism, I tried everything he did just so I would be able to speak to the experience –- I never wanted him to feel like he was doing this alone. And as we tried one thing after another, I found myself growing more and more intrigued with myself. I began reflecting back on my childhood, as if searching for clues. I began to focus more on being present than getting it done, and prioritized pouring belief and love into myself for the first time. As each day passed, something new seemed to present itself, as if in direct response to my daily surrender to “reveal thyself”.

This past winter, as we adventured to Disney World, I was shocked to discover that I had a more challenging time than Myles managing the over-stimulation. That instantly set off flags within me, and raised all sorts of old feelings and memories. I tediously practiced lovingly inviting each one in, learning even more still about my inner workings. Slowly I was able to lay to rest each harmful story, belief and judgment I had held onto so tightly. I gradually peeled back the armor and protection that had allowed me to remain hidden, never actually revealing myself. It was both frightening and liberating. I felt that feeling in my belly that resembles butterflies –- the one you get when you just know you’re on to something. I’ve come to recognize this as life leading you, and those butterflies are our calling to follow.

Two weeks before my 35th birthday, I found myself recounting my life’s story with intricate detail as I sat on a couch in Boston, wringing my hands and sweating in places I didn’t even know existed. At the end of the visit I heard the words I had both dreaded and silently longed to hear, the words that instantaneously made my life make sense. I was overcome with gratitude, love and compassion. Pride flooded in, leaving me feeling truly humbled and more connected to God and a greater purpose for my life.

As I drove home that night, I felt the constriction that naturally follows any expansion –- the icy grip of fear beginning to encroach from the perimeter of my thoughts, almost leaving me gasping for breath, suffocating the present moment and the power that resided in it. My fear was tethered to the balloon of judgment that does nothing but drag us along, never allowing us to truly find our feet and develop our roots. In an instant, I let go and found my feet. I let go of the self-judgment, the comparison and the fear of what other people would think about me. I let go of the “what ifs” and the possibility that people wouldn’t be able to look past my diagnosis and really see me. I surrendered to a higher calling and decided once again that living an authentic life is always worth it. This life is about so much more…

This is about a girl who became a woman and learned how to love herself.

This is about having the courage to lay your heart out there with the hope that it inspires someone else to do the same.

This is about never letting anyone or anything box you in or keep you small.

This is about no longer denying pieces of ourselves, but rather embracing every facet and letting our light shine out through the cracks of our imperfections.

This is about being brave enough to fully commit to living a life where we love first.

This is about embodying the change I wish to see in the world -– where we embrace everyone for who they are and celebrate our uniqueness without fear, judgment or comparison.

This is my story about being diagnosed with autism spectrum disorder.

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I Am Autistic. I Am Exhausted.

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At 37 years old, I have lived and worked in London for 17 years.  I am female, reasonably educated, maintain my own home, car and job. 

I am autistic.

I am exhausted.

Like some other women on the spectrum, I was not diagnosed until I was in my 30s, and understanding and coming to terms with that knowledge has taken time. It has taken time to unravel the course of events through which my life has been woven and time to understand the challenges that have led to health and emotional crises.

Three things it is important to understand:

  1. Autism is not a mental health condition, it is a neurological and therefore physical disorder.
  2. Autism does not mean a lack of difficult challenges in some people, simply that they may be more masked.
  3. There is an 85 percent unemployment rate amongst working-age autistic adults in the U.K., according to the Big Business Boost.

Like much surrounding autism, there is a general misconception of how the spectrum works. When we look at a spectrum in any other context, we tend to depict it as circular; take the color and light spectrums as examples. However, when people describe the autism spectrum, they seem to have the image of a straight ruler, moving people up and down a scale dependent on “how autistic” the outside party deems the person they are interacting with to be. As an adult who is considered “high-functioning,” this often leads to unhelpful external input regarding the difficulties I experience on a daily basis. People often see a mental health disorder and not a condition that can have physical characteristics.

As one of the 15 percent of autistic adults who have maintained work throughout adulthood, the exhaustion of the daily sensory overload of working in one of the world’s most frenetic cosmopolitan hubs, navigating the personal interactions and the long working days have taken a dramatic toll that I am only now beginning to understand. 

Sensory overload I can only describe as akin to being trapped inside a Faraday Cage with electricity being shot at you that the cage is not protecting your brain from, with the neural pathways triggering and misfiring electrical responses that cause your mind to retreat as a physical trickle-down occurs to the rest of your body. The result of this is commonly described as meltdown, looking to an outsider like a temper tantrum, but actually the reaction to an explosion of internal pain caused by an electrical release from all of your nerve endings at once.

Thirty-seven years of dealing with this while navigating the world has led to monumental burnouts, where I haven’t been able to function for weeks, meltdowns of such epic proportion that they have led to accidental overdose and hospital stays just because I realize now I was trying to find any kind of relief. The loss of friends, the loss of jobs, occasionally what feels like the temporary loss of sanity.

The reason I write this is that it is important for people to understand that an independent, functioning life as an adult on the spectrum is possible. I work in offices in jobs that require negotiation skills and vast amounts of interaction, I create policy, I work with data, I occasionally people-find for authors. I use the subset of skills that autism has enabled in my brain to find the stories in patterns. What is vastly important is understanding self-care and how to manage any challenges so they don’t over-ride you. That is why advocacy and increased understanding of how to live are so important.

There is a story as old as the world that tells us that, as humans, we are here to connect; only connect. Sentient beings, it is built into our DNA to link with each other, build relationships, families, community. And when you look at the science of it, I suppose that makes sense. All of the evidence is out there, written into the building blocks of nature and of the universe itself. There’s a magnetism to the space we inhabit, to the world around us, that draws everything together. Whether it be Einstein’s Gravitational Waves or the Golden Ratio, the ecology of connection and the ways in which we fit together are scattered and hewn into every particle of every organism across the entirety of space and time. And so it happens that connection begets connection and in turn begets life. We are born of the connection between our parents, into these families and communities and in turn build our own relationships, families and communities, down through history. A constant thrum of connection and creation. While it often seems that autism is a disorder embodied by disconnection, what I now understand is there are ways for everyone to fit; it is just a case of shuffling the pieces and making the small adjustments until we do.

I would like to work towards a world where neurodiversity in the workplace is fully understood, and employers can make adjustments for this. I would like to live in a world where I don’t get home from work at the end of the day and have to sit in a darkened room for hours. I would like to live a life where I can go out in the evening during the week or on a Sunday evening and not be totally wiped out. 

But until that point, now that I understand, I just need to do whatever tiny things I can to improve understanding and hopefully eventually improve life for others on the spectrum.

Image via Thinkstock

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What I Found in My Autistic Son's School Bag Made Me Burst Into Tears

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Another year at school starts. Another year where the odd-looking artwork and short stories will arrive at our house. I’m sure for many parents and guardians, looking through the plethora of items sent home during the school year is an absolute delight. The best pieces make their way to the fridge or are framed for all to see. But it’s not quite the same in our house. It can be bittersweet. Each year we see some sparks of improvement in my son’s work, but he still has difficulty in school. He has a teaching assistant help him all day, every day. Sometimes they help him complete work, and it’s pretty obvious when it happens. Still, we are always extremely proud of his efforts.

Sometimes there is an accidental item in there. We’ve gotten a piece of Romany’s work or Jacob’s work. And that’s what I thought had happened when I picked out this piece. The writing is too small, too neat and too close to the line, I thought. There some capital letters in the right places, and is that an exclamation mark?

little boy's drawing of a person

Our son is in a mainstream school. He has had a diagnosis of autism since he was 4 years old. Though the terminology of the challenges that may make up an autism diagnosis has changed a little in the years since, it still fits that our now 8-year-old has difficulty with his language and his social interaction. He can talk obsessively about topics such as the Formula 1 Grand Prix, whether you are interested or not. He can have difficulty with language and understanding how to use it. He’ll tell the truth even if it’s not something you want to hear. He scripts, reeling off lists. He doesn’t register that he talks loudly. He has little understanding of personal space.

He hasn’t been invited to many birthday parties since his first year at school, and we often still make our excuses, as the events are a bit stressful for him. I can count the number of playdates we’ve had on a single hand. Part of it is the difficulty in organizing one when there are other kids involved and you can’t just leave him somewhere without support.

When we pick him up from school he is excited to say goodbye to his friends, but he still declares his best friend to be his dad (which I secretly love but hope one day he is not.. before maybe being again). Lately he has asked if he could have other friends to play… and I have approached this possibility with the same slightly excited logical outlook for most things with the kids: what would work for us and which of the parents and kids we know it might it work for too. It’s a small list, to be honest, but my latest find makes me wonder if I’ve been underestimating my son.

Among the paintings and rainforest collages this year I found this absolute gem that brought more than a tear to my eye. My find is an outline of a person. “Anthony” is written in plain fine letters across its torso, and multi-colored writing surrounds its body.

The multi-colored writing is from his classmates and is a loving list of things Anthony is good at, (replicated exactly as written):

  • Well, is a good footballer
  • a good learner (thank you teacher)
  • a good runner

Then it gets better:

  • always very happy
  • Friendly and funny
  • a nice person to play with
  • very kind and friendly
  • Fun and really friendly!
  • you will let other people play
  • very friendly
  • A nice person to play whith

Then the joy:

  • is very kind friend – best frind
  • a great friend
  • A fab friend
  • A good friend *
  • A lovely friend
  • The best friend ever!!*

And my absolute favourite:

  • When I ask to play with him he says yes

It’s not all about writing, math, art, etc., and we may understand this more than some other parents. Look at what he finds difficult and then look at what his classmates, his friends, say about him. In the last week we went to a playground where he also found some friends to play with. It’s so lovely to see. So this year on the fridge we have one of his paintings…

“Anthony this is beautiful, can you describe it to me?”

“I’ve forgotten what it is supposed to be”

“It’s lovely, I really like it, shall we put it up.”

“Oh yes,”

…and I’m jumped on as he shows his excitement. And next to it along with some others, is this rather plain outline drawing that reminds my son of his friends and reminds me of how far he really has come.

You can follow Anthony and his family at www.rainbowsaretoobeautiful.com.

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A Letter to My Autistic Son About Where You Will Live as an Adult

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Dear Son,

I’ve been having conversations about your future lately with various people, all of whom I truly believe have your best interests at heart. We’ve been trying on phrases like “shared living” and “group homes” and “sheltered workshops,” and I’ve been rolling them around in my mouth, trying them on for taste. None of them taste nearly as good as chocolate.

You see, I’m trying to figure out our collective future, where you will live, where Daddy and I want to live (according to your father it’s not a permanent stint in Jersey), and where your brother, who is also autistic, fits into the picture too.

Let’s just say it’s complicated.

You see, my heart is torn, my sweet boy, because as much as you’ve matured and grown since those difficult days 12 years ago when you were diagnosed with autism at the tender age of 17 months, some things with you have not changed. You still love being at home. You still want to leave said home for about an hour each day and do something wonderful. The only place you ever want to stay more than an hour is Great Adventure or Disney, and with the latter being a bit financially out of reach on a frequent basis that leaves us with Six Flags and the occasional Pixar movie for outings of any length.

Your needs are complicated.

I have friends, friends whose sons and daughters are autistic adults, who tell me there is still room for growth, that I don’t know how you’ll change and grow in the next eight years before you graduate from high school. I speak to them of the group homes their sons live in, the day care their kid calls college, the seven-day-a-week in-home care they’ve fought for and won for their child. I read books and blogs about autistic adults and their particular work and living arrangements. For many of them their transition has been fabulous. And I know in my secret heart of hearts that if I’m honest, most of these pretty choices may not be for you.

You see, if I had my way, I’d live to be 121 to your 85, and we’d go to the great beyond together holding hands, you first, with me following just moments after. This dream is why your mother runs every day and limits her wine consumption (most of the time).

One might ask how I know this is right for us when you can’t tell me yourself.

I know this the way I knew something was seriously different about your development at 16 months even when your pediatrician didn’t seem that concerned given your father’s childhood, and told us to “wait and see.”

I know this the way I knew my world was forever changed when just a month later he shoved some articles into my hand with the word “autism” in their titles, told me to call a developmental pediatrician, and basically shoved me out the door. I also know our pediatrician was an a**hole, but that’s for another story.

I know this the way I know I have to build in extra time in the morning and at night just for us to hug.

I also know things will have to change.

Part of me wants to keep you here with us until we can do it no longer, and I don’t say this as a martyr.

Part of me wants you to live apart from us to give your father and I some breathing space, and I don’t say this as a callous mother.

Part of me wants you to have some sort of job.

Part of me just wants you to have a life of leisure.

Part of me wants to keep you here with us and freeze time for you, keep you safe and secure.

Part of me wonders who will snuggle with you and read you your bedtime story if I’m not there.

Part of me laughs at myself for these musings for everywhere I turn (except for Hawaii which seems to have fabulous adult services, aloha!) my options seem limited, to say the least.

Part of me accepts that your father and I won’t be here forever and that eventually you will live apart from us, so really the only questions are when and where.

Part of me just wants to know the future.

Part of me really doesn’t.

All of me wonders, time after time, how I will manage to give you a fulfilling life for 40 years from beyond the grave. Those “how” questions are a pox upon me.

As I accept the fact that none of this is an easy fix, all of me knows I love you and want for you the three things I’ve wished since your conception: for you to be safe, happy, and loved.

And all of me knows it’s complicated.

Image via Thinkstock.

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When My Son on the Autism Spectrum Asked If He Could Take Ballet Lessons

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Three years ago, when my son, Gavin, was diagnosed on the autism spectrum, we were advised to make a new road map for him. It was recommended that we move forward cautiously with our expectations of his growth. We needed to be aware that everything we had planned for him may or may not happen.

I watched friends post on social media about their children’s accomplishments with bittersweet emotions. Many of the posts were about children who were Gavin’s age or younger, but they were doing things he was nowhere close to achieving. I was obviously happy for my friends and their children, but my heart broke a little each time wondering when/if we would ever be able to share in those same milestones.

This week, I got to share in some of the events I thought might not ever happen. They were destinations I wrote off our road map three years ago. These events came later than I had originally planned, but the great thing is we just took a long detour.

On Wednesday, Gavin started his last year of preschool. This event was huge for a multitude of reasons. He was entering an inclusive environment instead of being in the autism sub-separate classroom. Secondly, we decided late this summer to move him from his school to one closer to our apartment, since he no longer needed the sub-separate room.

He was scared, as any child would be, entering a new school, but he asked my husband, Doug, and I if he was going to a new school because he was a “big boy.” What an amazing observation! Even Gavin was able to recognize his own growth and realized this new school was almost like a reward for his hard work.

Organized sports and activities were another area of our road map that I had deleted from our thoughts. I watched Gavin face challenges for years to listen to teachers, to play well with others and to follow directions for an extended period of time.

However, in late March, after Gavin switched classrooms, he was invited to a birthday party at a gymnastics center. The party focused on a ton of group activities and involved kids waiting their turn while they sat peacefully in a circle. I had been to these parties before when my daughter, Kendall, was younger, and to bring Gavin to similar one increased my anxiety level. I was sure he would not sit still, and I would be chasing him around the room the entire time. However, to my surprise, he was participating fully. He listened to everything the instructors asked the birthday guests to do. He waited his turn patiently and participated enthusiastically when it was his turn. I saw a new boy. A boy who was developing at his own pace and was finally ready to be involved in social activities.

Later this spring, Gavin joined me at one of Kendall’s ballet lessons. He leaned over halfway through and asked, “Next year, I do ballet?” I was shocked. This was the first time he expressed interest in a group activity that wasn’t school related. I leaned over and said, “Sure, Gavin. If you sit quietly through the rest of her lesson, you can do ballet in the fall.” I have never seen him sit so calmly before. He didn’t make a peep. He watched for the next 30 minutes in silence, and when the class ended, he leaned over and said, “Now I do ballet next year?” It was impossible to say no.

I was ecstatic to enroll Gavin in ballet, yet I knew we had one last huge step to get him there — the clothes. Even if Gavin wanted to be a dancer, I was concerned that he didn’t realize this meant he had to wear a certain outfit. After convincing him that he wouldn’t wear the same clothes as Kendall, he finally understood he needed a white shirt and black pants. I asked him to wear black shoes for class, but he insisted on white. I think it was the one way he felt like he had some control of the situation.

This Saturday, after a short struggle to get him dressed, we walked Gavin over to his first ballet class. He followed the directions as I would expect any 4-year-old would. He understood the directions, and in normal Gavin fashion, he spent the bulk of the lesson taking in the room and studying it so he knew where things belonged. All and all, he did great, and I know going forward he is only going to get better.

We are beyond proud of him not just for his ballet lesson, but for also wanting to be involved with other children.

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