I Never Knew I'd Turn Into This Type of Person When My Son Was First Diagnosed

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“Your instincts were right.”

This is what I would tell my past self — the self whose 13-year-old just got an Asperger syndrome diagnosis.

When he was 2, I knew something was up with my son. But no medical professional or therapist ever mentioned or discussed a possible explanation for his developmental and social issues. When he played with cars, he turned them over, placed them up close to his eyes and watched the wheels spin and spin and spin. He was fascinated by light, and we’d go from mall to mall during the holidays to look at all the Christmas tree displays — and they had to be the multi-colored lights, not the plain white twinkles. He was captivated (no, obsessed really) with the Tyrannosaurus Rex and collected every toy, book and VHS on his prehistoric pal to learn and talk about it, literally nonstop. He paced around and around our coffee table engrossed in self-conversation.

With those kinds of behaviors and his milestone delays, I’d ask medical professionals, “Is he autistic?” The response was always a categorical “No,” followed by varying responses like… I’m an overbearing, overprotective, overreactive mom who just needs to relax and not worry so much.

“But now, you know for sure,” I’d tell my old self and feel comforted in the fact that I had my son’s back from day one and was already doing what was best for him. What I didn’t know then but know now is that my life would have no meaning, no depth, no purpose if it wasn’t for autism. I didn’t know that introverted, low-key me could become the persistent, relentless warrior parent who advocates for him and others so they can grow to their best potentials.

I’d tell my past self this:

“You’ll become a foot soldier with your eyes and ears constantly on the ground to clear your son’s path and scout for individuals and organizations who can join your ranks of support. You’ll be a covered wagon, pioneer woman blazing a trail into the unknown to create a better life for him. You’ll don your virtual business suit and become Mom, CEO to pitch for services and make sure everyone works together on the business of building your child’s self-confidence and skill set. You’ll be Dorothy, Lion, Tin Man, Scarecrow and the Wizard of Oz combined, using all of your powers, influences, creativity, fast-thinking, courage and heart so your he can (and will) thrive.”

I’ve played all of these characters and taken on even more alter egos from Sherlock to Iron Man —whomever my son needs me to be at any given point in time. Today, he’s 29 years old living in an independent living environment, driving and working as a voice actor. Does he still struggle and need more attention and support than my neurotypical daughter? Yes, but every day I see him needing just a little less of my oversight, and I just get to sit back and enjoy the incredible man he has become.

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For all of January, The Mighty is asking its readers this question: If you could go back to the day you (or a loved one) got a diagnosis, what would you tell yourself? 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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When a Doctor Poorly Delivered Our Diagnosis, This Is How I Responded

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“I have some very bad news to tell you.”

Those were the words that started the avalanche. The head psychologist of the early intervention program in our county said them to us after our 2-year-old son, Coby, endured a 4-hour-long evaluation. As my husband and I sat in the room in stunned silence, the doctor continued: “Your son is severely autistic and mentally retarded.” I’m sure she said other things after that, but neither of us actually heard them.

After a solid week of crying, I decided to pull myself together. Whatever this “thing” was called didn’t matter. What mattered most was that we would get our child the help he needed and try to prove this psychologist wrong. So we started speech and occupational therapy and lots of work at home. When Coby was 3 years old, he entered the school system and was incredibly lucky to have the most amazing teacher on the planet. We slowly realized our Coby was actually smart and had a super high IQ. Did he still have autism? Sure, but so what?

Fast forward ten years, and our younger son, Liam, was in the same boat. I saw the signs early on, and I was ready. When we went in for the evaluation, I was ready to fight. But then something incredible happened. A calm and peace came over me. There was no need to fight. This little angel who was my son yesterday, is still my son today. The diagnosis didn’t change a thing. I said the word over and over again: “Autism, autism, autism, autism…” I waited for the tears to come, for the period of anger and mourning, but they never did. I learned something important: Acceptance. I also learned that the experts are not always right about their prognosis. They get a few hours with a child who may be tired, frightened or just having a bad day. My children have autism, but autism definitely does not have them.

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5 Truths I’d Tell My Past Self About Autism

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It’s been 10, 11 or 12 years since my son’s autism diagnosis, depending what you count as the start date (was it the day he was proclaimed “developmentally delayed,” “PDD-NOS” or “autistic”?). No matter the date, I’d still tell my past self these five truths:

1. Professionals will stop treating you like you’re crazy for thinking your son is autistic. Back when you started the journey, so-called experts like your first pediatrician didn’t heed your concerns or your PowerPoint-like presentations. But now, the understanding and recognition of autism has grown, so you don’t need to present the case for his autism at every doctor visit. Getting appropriate services still requires stamina, so it’s a good thing you developed your advocacy skills early on.

2. That resolution you made to have a good life with autism is one of the best things you’ll do for your son and yourself. You’ll even write about it in an NPR essay for “This I Believe.” It does give you a positive purpose, even on the hard days. It does help you appreciate the child and the life you have in the moment. It does make you grateful for the joy he brings you (spoiler alert: you will crack up with him at the emergency broadcast system).

3. Your quest to find the equivalent of a “What to Expect When You’re Expecting/What to Expect The First Year” for parenting a child with autism is a complete waste of time. Each person with autism develops in their own way, on their own path. But you will find something better: books, blogs and Facebook pages of people with autism who articulate their journeys and provide thoughtful parenting advice (especially those who become parents themselves), as do the parents of other children with autism. And your son will communicate more about his wants and, later, his thoughts. Ten years on, you will be an expert in his language.

4. While you will not be a paid full-time journalist, as perhaps you thought you’d be, you will use your journalism skills daily. You will not believe all the conflicting theories about the causes, treatments and approaches to autism you will encounter. Your ability to question, to research, to synthesize and to separate what’s valuable from pseudo-scientific manure will help ground you. As will your return to writing – on a limited basis about subjects that have nothing to do with autism (home design… who knew you’d like that?).

5. In 10, 11 or 12 years, when you look in mirror, you will be happy with the person you’ve become. You will like the person you’ve become not in spite of autism, but (in part) because of autism. There will be a time when you feel parenting a child with autism isolates you from the world at large. But then you’ll start to feel a connection with other people who struggle, other people who experience the world differently from “the norm,” other people who wake up each day grateful for, in your words, “the good life they make.”

The Mighty is asking its readers this question: If you could go back to the day you (or a loved one) got a diagnosis, what would you tell yourself? 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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What the Doctors Didn't Tell My Parents the Day They Got My Diagnosis

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Dear parents of children diagnosed with special needs: please don’t give up.

On the day of my diagnosis, there was so much they didn’t tell my parents and me. They told us everything I likely wouldn’t do. They evaluated and pointed out my struggles and challenges. Appointment after appointment, my parents heard and had to be part of conversations about what I couldn’t do and what I likely may never be able to do. Professional after professional, year after year, diagnosis after diagnosis, appointment after appointment, meeting after meeting, time and time again this repeated itself.

You see, I wasn’t diagnosed with autism as a young toddler or preschooler. Seventeen years ago, when I was 4 years old, autism wasn’t as well-known and definitely wasn’t a likely diagnosis for a little girl who talked early. When the pediatrician asked my mom if I could say a three-word sentence at age 2, I told the doctor myself: “I do that!” This was the same little girl who didn’t know how to play with other kids or toys at preschool. This was the same little girl who frequently bumped into things, the same little girl who appeared to have very little knowledge of where her body was in space, etc. I was born six and a half weeks early, 22 years ago. Doctors didn’t know then what they know now.

My mom knew something wasn’t right and she trusted her mommy gut instinct on this one. I was her first child, but she just knew there was something different about me. When I was 3 years old, we found out I was vision impaired. My parents were told I’d likely be blind by age 5 or 6. Yet, something miraculous and unexplainable happened over the years–my sight started  to get better! The eye doctor, a pediatric ophthalmologist who works at a vision center would say to us, “I really wish there were more kids like Chloe so I could do a research study!” My fifth birthday came, then my sixth and seventh and not only could I see, but I was learning to read.

I qualified for special education services through our local school district when I was around age 5. My needs were being met, I received OT and speech, special education services, a teacher for the visually impaired services, PT and more. We also continued to see a neurologist as well because there was more going on than just vision impairment. My mom continues to hear things like, “It’s possible she had a pre-natal stroke.” Then we heard developmental apraxia as our answer, followed by ADHD, followed by a sensory processing disorder and finally followed by the one that matched the best: autism.

The one thing my parents were never told was that I’d be an intelligent, bright, smart, funny, kind, caring, helpful, loving and sweet little girl who would grow up to be a young lady and use her past experiences as a way to help others.

If there was one thing I could tell parents of kids who were just diagnosed it’d be: “Don’t give up, please don’t give up, and remember, no one can predict what the future will bring. Sometimes you just have to wait and see and ride the waves of life to get there.”

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The Mighty is asking its readers this question: If you could go back to the day you (or a loved one) got a diagnosis, what would you tell yourself? 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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Why This One Little Word From My Son’s Teacher Meant So Much to Me

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I was going through my son Matthew’s backpack when I saw an envelope in the bottom of it. Immediately, I knew it was a “thank you” card from one of his teachers or teacher assistants.  Totally not necessary since my Christmas gifts to them are my way of saying, “Thank you!”  I admit I read it quickly.  And then I stopped.

I opened up the card and read it again.  One word caught my attention.  “I love working with our Matthew.” One word. Our. That one word changed the meaning of the sentence for me.  If she had written “I love working with Matthew”,  I would know that she loves working with my son. But by adding that one word, “our,”  it meant “I love working with this boy who belongs here, is accepted here and that we all take responsibility in caring for.”

I already knew this of course, see a blog I wrote previously, but it’s always good to be reminded.  In that blog post I mentioned ten reasons why his school is the right place for him.  Since that blog we have had his IEP meeting, where I was reassured of that feeling again.  In that meeting, someone commented “Everyone loves Matthew.  We all love Matthew”.  And it was genuine and sincere.  As we went around the room and staff updated us with information about Matthew, it was apparent it went way beyond sharing what he is doing academically and behaviorally.  Each person had a unique little story or tidbit to tell about Matthew. Stories that show that they really know who Matthew is and that they get him.

In fact just today I had written a note in his communication book that it was killing Matthew to see new snow and not be able to play in it.  Later in the day I got an email and a picture of Matthew playing with snow in a big container inside the school.

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As I was reflecting on this, I realized that as a family we are really lucky because school isn’t the only place where they think of him as “our Matthew”.  It extends to other parts of our lives as well (our friends, our family, our neighborhood, and our church.)  In the interest of not turning this into a book length blog post,  I thought I would share some of the ways our church fit this description too.

Acceptance and Understanding – Matthew is accepted for who he is.  People don’t look at him funny when he starts jumping, making noises or flapping.  They understand that many of these things are his way of showing excitement.  People understand his need for touch and let him scratch their beards.  Several members have told us that they were “moved” when Matthew chose their lap as a place to sit or their hand to hold.  They don’t blink an eye when they see him coming into church with both a plastic waffle and bun from the play food in the nursery.  Every Sunday these are his two favorite items to carry around (and scratch).

Valuing – Our church goes beyond accepting Matthew.  They value him as a member. When he is in Sunday School, his teachers ask him questions, just like they ask the other students in the class.  With my support we can facilitate his response which helps the other students see him as an important member of the class too. Our childrens’ choir director knows that one of Matthew’s strengths is jumping.  So when she leads us in singing songs that involve jumping, she often does a little shout out to Matthew, letting him know to get his jumping feet ready.

Social Skills – Something that Matthew will probably always be working on are social skills.  Church is a safe place to make mistakes and learn from his mistakes.  Sunday School, Fellowship/Treat Time, Nursery, and even the worship service (i.e. passing of the peace) itself all give him opportunities to learn and grow socially.  Being invited to birthday parties of his Sunday School friends is another opportunity that he has to work on his social skills.

My hope with this blog is that even readers who have never met Matthew feel like they know him, understand, and accept him.  That to all of us he is  “our Matthew”.

This post originally appeared on Autismic.

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What I Would Have Told Myself The Day I Was Diagnosed With Autism

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Dear Kerry,

When you arrived at the hospital today, you may have thought it was just for another checkup. Over the past year now we have been very used to these visits. Going to doctor after doctor throughout the tri-state area, some with funny elephants on their walls and others with what feels like an entire toy store for you at your disposal. What will make today’s visit different than any other though is today your parents will find out for the first time that you have something called PDD-NOS, pervasive development disorder not otherwise specified, a form of autism.

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You won’t learn what those initials and autism are for six more years but what I can tell you now is that there is a long road ahead for us. There are going to be many ups and downs along the way. You’ve already had to deal with some of the downs from being non-verbal until you were 2 and a half and now having sensory integration issues, emotional difficulties, a stutter and not being able to speak in complete sentences. The emotional issues are heightened for you because more than anything, you are often in overload because of the anger you’re feeling about not being able to communicate.

I wish more than anything right now I could go back to those days of your growing up and take that anger away. That I could take that feeling of self-doubt away from you while growing up when you had those difficulties that you thought may have gone on forever.

Why can’t I communicate?

Why can’t I make friends?

Why do I scream when someone tries to touch me?

Will I ever be loved for who I am?

And then finally…

Why me?

I know the road seems dark right now but what I can tell you is this:

You will learn to communicate.

You will make friends.

You will become someone who loves to be touched to the point that you’ll even want to go to Central Park one day in New York holding a “Free Hugs” sign.

You will find out that you were loved all this time by your family, your friends and later, by several girls in romantic relationships.

And then, when you see that there is a light at the end of the tunnel, you won’t question why you have autism. You will love the fact you were put on this planet with something that you have been able to embrace, which has made you a national speaker and role model to countless in the autism community today. Because, today, you have learned what your weaknesses are and what strengths your autism brings to your everyday life–like being able to focus on key interests for long periods of time. That at other times, you will be one of the most genuine and truthful people that you will ever meet.

So, Kerry, today you may have been diagnosed with autism, and the road may indeed be long, but don’t let autism define who you are.

Define yourself.

Different, not less. — Temple Grandin

Autism is a very wide spectrum. If you’ve met one person with autism, you’ve met one person with autism. I can’t say that my story above will be similar to the next individual, or that we will see autism in the same way. What I do know though is that we were all put upon this earth with challenges to face and overcome. For everyone in our community, what I ask is that you stay true to the therapies and supports our loved ones may need and always try to do right by them.

It took me almost 16 years after being first diagnosed to see this message the way I do now. After the occupational therapy, the speech therapy and the physical therapy, I have a much different outlook, and I wouldn’t have been able to do that without our community.

Always believe great things are possible. We know more about autism than we did yesterday, and we sure will know more about it tomorrow.

The Mighty is asking its readers this question: If you could go back to the day you (or a loved one) got a diagnosis, what would you tell yourself? 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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