I Rely on My Son’s Teacher to Share the Details of His School Day With Me

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For a parent of a child with special needs who may be limited in their ability to verbally express what transpired throughout their school day, communication between teacher and parent is key.

When I have a conversation with my son, Leo, who has autism, about his day, it might go like this:

Me: Leo, your note home said you had a good day?

Leo: Good day? (This is an echoic response.)

What did you learn today?

Leo:

Me: Did you eat all of your lunch?

Leo: Lunch? (This is also an echoic response.)

Me: What was your favorite thing that you did at school today?

Leo:

Me: I’m so proud of you, my Leo.

And I am, always, infinitely proud of my boy. 

There will come a day when he will tell me about every facet of his school day, and I will bask in every glorious detail. But for now, I must rely on his school and on his teacher to help me fill in the blanks.

That communication is so important. The details are necessary… Vital.

It is the difference between feeling like I’m stumbling about in the darkness, each trepid step marked with uncertainty, and feeling like I’m on a clearly lit path.

Every day, I send Leo to school for roughly seven hours. And when he returns, I rely on those details from school to give me insight into his day. So that I can talk with my child about the moments he expressed joy, the challenges he faced, what sparked his interest.

So that I may navigate my way through his world with him through that clearly lit path, rather than in the darkness, hands outstretched, grasping at anything that will help me understand what my boy sees and feels while I’m not there.

Follow this journey on Facebook at My Life With Leo.

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The One Thing I Want for My Son With Autism in the Future

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Shelby: “Whenever any of us asked you what you wanted for us when we grew up, what did you say?”

M’Lynn: “Shelby, I’m not in the mood to play games.”

Shelby: “Just tell me what you said, Mama. What did you say?”

M’Lynn: “The only thing I have ever said to you, ever, is that I want you to be happy.”

– An excerpt from the 1989 film “Steel Magnolias

Recently, a woman posted a status on Facebook expressing her fears concerning her daughter’s future. Her daughter, who was diagnosed with autism, may never move out. She may never live independently. She may never get married.

I’ve thought about these things before. When I see friends post cute little memes about how they’re not just raising men, but they’re raising someone’s future husband and father, too, I think about my son and wonder if he’ll ever be a husband or a father.

But honestly? Those things don’t seem to mean as much to me as they mean to some others. And I’ll tell you why.

I know people my age who are happily married. I know people my age who have already experienced divorce. I know people my age who have had their hearts broken once, twice, three times. I know people my age who are complacently stuck in relationships that may never progress. I know people my age who are single and enjoy it — and who are single and miserable about it. I know people my age who are in committed gay partnerships, some who are even married now (yay 2016, am I right?), and some who raise children together — biological, artificially-inseminated, fostered, adopted. I know white, Hispanic, black, Asian dating and married couples, and I know mixed-race couples. I know people my age who are single parents. Some who tragically lost the loves of their lives through natural causes or accidents.

Life doesn’t always turn out the way you think it will. And let’s face it: Everyone’s future is different.

Let’s pretend just for a second that my son is a neurotypical child who will, with pretty strong certainty, live independently one day. He might plan a white wedding alongside a beautiful bride. He might marry a man instead. He might go through an ugly divorce, or quietly sign papers for an amicable one. He might have children, or he might decide parenthood isn’t for him. He might devote himself to a woman and live with her, father her children, but never propose. He might get his heart broken. He might dedicate himself so much to a career that he never has time for relationships. He might flit from lover to lover. He might marry his high school sweetheart like his daddy and live happily ever after. He might be attracted to blondes or brunettes or redheads. He might not have a type at all. I might dance with him on his wedding day. Or he might elope. He might, dare I say, stay single for years and years.

Are some of those scenarios more preferable than others? I suppose so. But they’re all possibilities, right? I don’t believe that just because I raise him in a home with two high school sweethearts who stay together, manage careers, raise him — that he’ll choose the same path we did. That’s not exactly a fair assumption, is it?

So let’s put autism back on the table. Because of William’s developmental delays, communication struggles, and diagnoses, we don’t know with any certainty what he can achieve yet. We believe in him and his ability to learn and progress. We believe he will do things that will blow our minds. We hope to see him excel in school and select a job or trade of some sort.

But really? We just want him to be happy. What more does any parent really want for his or her child?

And if he is 18, 19, 20 or even 30, unable to function completely safely independently in the big bad “real world,” move out, rent or buy his own place, or participate in a relationship of some sort, I suppose I might have sad days. Because it’s a natural progression for a child to move on and start a life of his or her own as an adult.

But when I read that post on Facebook, I couldn’t help but let one selfish, strange thought cross my mind: If William is unable to leave my home or choose someone to marry and spend his life with, how lucky am I that he will belong to me forever?

How lucky would I be for him to always, always be mine?

It may sound simple. But those little thoughts? They comfort me. Do I hope beyond hope that his transition into adulthood goes smoothly and he can choose where to live, what to be, who to spend his time with? Of course. Do I hope he owns a home one day and he can invite me over for the holidays? Absolutely.

But right now, William appears to be the happiest human being I know. And “the only thing I have ever said to you, ever, is that I want you to be happy.” So no matter where he is, what he’s doing, if he’s happy, I’m happy. Simple as that.

Follow this journey on Momma Bird.

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My Autism Diagnosis Finally Helped Me Understand My Family

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I’ve always known that my grandmother, Frances, and I are alike. We share, to one degree or another, many of the same behaviors and ways of seeing the world that finally drove me toward my own autism diagnosis.

I wouldn’t have survived without my grandmother and her partner. They fed and clothed me, paid the doctor’s bill when I was sick, and gave me the love and acceptance I received nowhere else. I repaid this by leaving home at 18 and almost never coming back. It’s taken me 43 years to understand that I was running away from myself.

In many ways, she’s a window into how my atypical neurology has been expressed among four generations of family members. It’s as though the building blocks of my autism and associated neurological challenges were expressing themselves to a greater or lessor degree in her, her parents and siblings.

I wrote a story last week about her. It was painful to write… part apology for so seldom returning home after I turned 18, part inquest into the ways in which she, her parents and siblings were so different from others and that they had passed down to me. I posted the piece before going to bed, only to wake up in the night and take it down. It somehow had left me feeling exposed and vulnerable to the same censure I felt as a child for not fitting in or being like other people.

It took another couple of days for me to recognize that the real problem with the story was that it was missing the sense of hopefulness and self-acceptance I’ve found since my own diagnosis. No matter how challenging it is for us and for our families, being neurologically different today is far different and, in most instances, better than it was a century ago.

Frances, grew up to be sharp, no-nonsense and capable of doing complex math calculations in her head, never needing pencil and paper. She knew lots of people by name but had trouble with small talk, kept to herself and never invited anyone into her home. She got up and ate her meals at exactly the same times every day, chain-smoked her way through packs of unfiltered Kools, worked crossword puzzles and watched TV. She became distressed to the point of tears if meals weren’t on time or plans changed at the last moment.

Accepting myself as autistic has been tremendously positive for me. Understanding why and the ways in which I’m different has disrupted a lifelong pattern of fear, anxiety and depression. It also has helped me stop running away from my past. It helped me finally understand what might have been going on with my family.

I often wonder what my grandmother’s life might have been like if there weren’t so many fears about being “different.” I hope her life would be more like mine. Different from most other people’s lives, certainly, but mostly filled with happiness and hope.

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Autism Speaks Is Changing Its Mission For the First Time in Over 10 Years

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Autism Speaks is changing its mission for the first time since it was founded in 2005. The organization is the largest autism advocacy group in the U.S. Its founding objective was to find a cure for autism.

Rather than focusing on a cure for autism, the nonprofit says it will now look towards advancing research into causes and better therapies for autism spectrum disorders, as well as promote acceptance, advocacy and support for individuals and families.

“Autism Speaks was founded on the goal of curing autism as one of its objectives,” Stephen Mark Shore, an Autism Speaks board member, told Disability Scoop. “However, similar to many experiences of parents of children with autism, the organization grew to believe that autism is something to be worked with for promoting fulfilling and productive lives of people on the spectrum — rather than something that has to be done to.”

This year has marked a number of changes for Autism Speaks, most notably the death of co-founder Suzanne Wright, and the exits of its previous president and chief science officer.

As per its updated mission, over the next 10 years, Autism Speaks plans to make significant progress in the following areas:

  • A better understanding of the causes and typology of ASD
  • Children with an autism spectrum disorder being diagnosed before the age of 2
  • Children having access to appropriate intervention, services and resources immediately following diagnosis
  • The availability of better treatments both for underlying pathology as well as co-existing conditions that decrease quality of life for those with autism
  • People with ASD and their families have transition plans that result in more independent adult life that is meaningful to the individual
  • Individuals with ASD will have effective interventions, services and supports throughout their lifetime

As awareness has progressed, more have come to understand that autism spectrum disorder is not an illness, but a neurological difference that may present challenges for an individual growing up in a world designed for the neurotypical brain. An estimated one in 68 children in the U.S. are on the autism spectrum. It’s important to remember these children grow up to be autistic adults, who deserve support and acceptance.

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When Someone Says, ‘He Has Autism? But He Seems So Smart.’

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Has anyone ever said this about you or your child? When I work with parents of children on the autism spectrum, they tell me a typical unsolicited comment includes, “Oh, your child is on the spectrum? But he seems so smart!”

When I was growing up on the spectrum, I was seen exactly like this because of my ability to do my homework twice as fast as many peers in my classes. When I was in fourth grade in mathematics, I would get As often on tests and homework assignments and receive average grades in my other classes. When my parents would tell people about my grades, though, they would often get asked how I could be on the spectrum.

Today I get the same thing when I go out to speak. You won’t believe how many times during a Q&A I hear about how I’ve “grown out of having autism” and how I “seem so smart now.”

Whenever I hear a comment like this I cringe, but it’s also an opportunity to educate.

Many people with autism have unique interests and also unique learning styles. We will often pay attention more intently when we are doing something that interests us versus something we don’t like. Because of our key interests, many of us can become experts in our fields if we have a passion behind them. Temple Grandin, one of our leading advocates in the autism community, once said, “Half of Silicon Valley is probably somewhere on the autism spectrum.” Many of those in Silicon Valley, autistic or not, are the smartest people in the world because they’ve been able to turn their interests in technology into a career.

Of course, many individuals with autism (and without autism) may struggle to perform well in certain areas — but that doesn’t make them any less bright than the next person you meet. When we can find a way to teach the way these kids learn, we can find ways to help them show the world how bright they truly are.

This goes for those who are nonverbal as well. I used to be under the misconception that because someone is nonverbal that meant they were on the “low-functioning side” of the spectrum. Today, more than a quarter of individuals who have autism are also nonverbal. It wasn’t until I heard of Carly Fleischmann’s story, a young woman with autism who is nonverbal but communicates via her iPad, that I then learned of the countless stories of bright individuals like her out there in our community. 

Bottom line is, the next time you hear a comment like this, I want you to be reassured that our children are brighter than what the general public’s perception is. We are a close knit community, but we have a loud voice when it comes to having our stories to tell.

Ignorance is truly a lack of awareness, and the more barriers we can break down to avoid these comments the better our community will be.

A version of this blog originally appeared on KerryMagro.com.

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Mother and son walking on a beach at sunset

I Hope You Never Have to Remind Me: A Letter to My Son With Autism

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I have to say, we’ve come a long way, you and me, on this wild journey. And I’ve grown as much as you have in these short, full five years since we first laid eyes on each other.

No doubt we have our moments, you and me, when you cry and I want to, and when I cry and then it makes you cry, too. When you get mad and then I get mad, but at least we are mad together. It can be downright frustrating when you can’t understand each other. But we’re finding a way, you and me… our secret way of understanding. And in our understanding, we’re both learning how to live together and love each other. You’re learning to use your words, and I’m learning to watch mine. You’re learning to speak louder, while I’m learning to tone it down.

Yeah, we’ve come a long way, you and me, on this journey.

So when it happens, when I forget, and it feels like we’ve become strangers all over again — and I can’t reach you, because you’ve shut down and in all that shutting and retreating, you’ve shut me out. Please let me into your hiding place, so I can save us both from this place, where walls are tall and wills are strong and understanding has become a deserted friend. Because sometimes in all this growing together, I forget we’re worlds apart. And when our worlds collide, sometimes it’s hard to find a meeting ground.

The truth is, I need you as much as you need me. And I don’t ever want to lose what we have, this strange, silent understanding.

I admit I get caught up in myself sometimes, in my dreams for you and hopes for more. It’s just a straight-up mommy thing that can’t always be helped; that’s just how we get sometimes. But you are you, and I am me, and that’s what makes this such an adventurous journey. And for a moment I may forget just how much you’ve taught me and how much I’ve grown since we first met.

So please forgive me if I ever forget. If I ever take for granted our differences that color our lives and gift us with feelings we thought we could never experience. And if I forget like all mommies do, and you just have to remind me, even though I hope you don’t — I’ll be right here waiting until you let me back in, so we can keep walking this journey together again.

Follow this journey on Branch Life Journey.

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