The Best Advice I Can Give a Mom Who Just Got an Autism Diagnosis

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A sweet, overwhelmed momma sent me a message this week. She’d just received an autism diagnosis for both of her twin boys. She already has them in speech therapy and occupational therapy. She’s already been doing everything she can to try to help her sons, without really knowing why. She already knew, prior to hearing it from the doctor, that something was going on. But then the doctor said it. They both have autism.

It was one of those moments, I’m sure. The ones that just stick and define the rest of our lives, for better for worse.

Both of her precious sons have autism.

And her only question for me?

“Where do I start?”

My heart broke for her.

I remember being this momma. I remember walking out of the doctor’s office, thinking everything had changed, but I had no real idea of what I was supposed to do differently once I got home and back to mothering my son.

I remember thinking, “Why doesn’t someone tell me what I am supposed to do?

I remember thinking, “Even if someone tells me, I don’t think I can do it. I am freaking out. I am depressed. I am too tired to do anything right now.

I remember thinking, “He has autism. He has autism. He has autism,” over and over again, letting it sink in, wanting to accept it, needing to get my head to embrace it, so that my heart would stop clenching inside my chest.

And through all of my own processing, anxiety attacks and grief – my son was still the exact same boy he was before I walked out of the doctor’s office that day with a diagnosis.

He still is.

The truth is that a diagnosis changes everything, and it changes nothing.

This momma left the doctor’s office with almost no direction – only more appointments with more doctors.

And I what I told her is what I would tell any parent in the same situation, in the newness and confusion and fog of an autism diagnosis.

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It’s OK to just do nothing for now.

It’s OK to go home and go out for ice cream.

It’s OK to snuggle up with your child tonight and just watch that video she loves and over and over again.

It’s OK to get a babysitter and get out with your husband. Don’t talk about autism at all or talk about nothing else – spend the time the way you need to spend it.

It’s OK to read every single thing you can find on the internet, and it’s OK to avoid all the articles like the plague.

It’s OK to spend more on books from Amazon than you spent on your first beater car.

It’s OK to, instead of books, buy a bunch of new makeup or get your hair done.

It’s OK to just be the same mother you were before the diagnosis…

because you are.

You’re not harming your child by waiting a few days or weeks to get your bearings – in fact, you’re helping him.

Because a momma who’s running scared and just doing anything to feel like she is doing something is not what your child needs.

In time, you will surprise yourself at how capable and strong and educated and determined you will become for your babies. You will easily be able to understand all the words, acronyms and language the doctors and therapists and other mommas speak as if it is their native tongue. You will.

And you will be really, really good at it.

But for now, you don’t have to be.

Your child is the same child, and you are the same momma.

Nothing a doctor determines changes that.

My best advice, in the first days and weeks post diagnosis is simply this –

take as much time as you need.

This post originally appeared on Not the Former Things.

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An Apology to My Tourette’s Syndrome

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Dear Tourette’s Syndrome,

When I met you I was just 10 years old. I’ll admit, I wasn’t your biggest fan back then. I’d never heard of you before, but everyone I trusted told me you were bad news, and at the time I believed them. You were like that annoying relative you’re forced to see every year at Thanksgiving. But for me, every day was that thanksgiving. How could I be thankful for something that caused me so much physical discomfort and social stigmatization? 

I couldn’t. For the longest time I couldn’t bring myself to tolerate you. I even tried to pretend you didn’t exist. I tried to ignore it when you interrupted me with peculiar sounds and muscle movements. Yet, you kept showing up to parties I never invited you to–you’re pretty sneaky that way. But recently, something changed in me. I began to realize that beneath your disrespectful behavior and constant disruptions, there is something extraordinary, something uniquely beautiful.

Don’t get me wrong, there are times I wish we’d never met. After all, you’re the reason I blink my eyes as if there was something stuck in them. You’re the reason I was bullied in fifth grade for making clicking sounds with my mouth and pursing my lips together as if I was trying to kiss the air. You’re the reason I yawn when I’m not even tired. You’re the reason my elementary school music teacher yelled at me in front of my entire chorus class for making too much noise. You’re the reason my yoga instructor told me to spit out my gum when I wasn’t even chewing any.

But you’re also the reason I’m so perceptive to the world around me. You force me to work harder and look further. You give me a riveting, rhythmic presence that reveals itself when I’m singing and performing. But most important, you’ve helped me learn about the unrealistic standards of normality that exist in our society, and you’ve dared me to break them. 

Sometimes I think of you as my own personal trainer. Your push me to be better. You inspire me to be open-minded to eccentricity and peculiarity. You’re a challenge I was forced to accept, a challenge that has made me stronger.  

The problem is, most people don’t approve of you. They think you’re a bad influence on me. So I try to hide you from the world. I’m doing it for your own good, really. If I showed you, the true you, I might embarrass the both of us. So I disguise you as natural acts like yawns and coughs and sneezes to avoid the looks of disapproval and disgust I might receive otherwise. However, you always get back at me, appearing fervently when I least expect you to and making up for lost tics. 

I’m writing to you because I want to say I’m sorry. I’m sorry for complaining about you and refusing to appreciate what you have done for me. My whole life, I’ve focused on your flaws rather than your artistry. But I’m finally ready to accept you, to embrace you and to introduce you to the world. After all, I can’t imagine my life without you, and to be honest, I wouldn’t want to. 

Yours Truly,

Tara 

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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26 Milestones on the Special Needs Journey That Deserve To Be Celebrated

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Sometimes, without realizing it, we take completely amazing feats for granted. Think about it. We just expect to be able to talk, right? We don’t stop and think about how cool it is that we’ve actually developed a skill. At The Mighty, our readers are learning every day that no victory is too small to celebrate. That’s why we asked them to share some of the most important milestones they or a loved one have reached in their special needs journey.

Here’s what they had to say:

1. “The first time my son, who has Erb’s palsy, was able to reach out to me with both arms. Those were my first tears of joy after his birth injury.” — Erin Stubbs Braun

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2. “When my daughter spoke her first three-word sentence. She told me about the bath water, saying,It’s too cold.” After a year of therapies, it took everything in me not to call the speech teacher right then and there.” — Amy Holler-Bender

3. “Absolutely everything my son does melts my heart. He’s just started taking independent steps at 4 years old, and he’s nonverbal but is starting to use sign language now. I nearly cried the night he took himself off to a proper bed (he usually sleeps in a special one), waved at me and cuddled in to fall asleep. He amazes me every single day.” — Gemma Blelloch

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4.When I saw my kid playing with his classmates and being included, not just tolerated at a local indoor playground during a day off from school last fall.” — Bethany Parker

5. “When our son with lung disease was finally able to blow hard enough to make a noise on a whistle. Kids and whistles are usually so annoying, but for the first time the sound combination was like a symphony.” — Kate Sytsma

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6. “When my daughter smiled for the first time about a year after a severe brain injury.” — Jillian Swinkels

7. “When my nonverbal quadriplegic son and I discovered our own way to communicate. We have our own language now and it’s amazing. Even his older 4-year-old sister uses it.” — Priscilla Zahner Rosenlund

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8.My son learning to walk, finally, at nearly 2 years old.” — Anna Powers

9. “The small milestones are really countless but the greatest is that George is here, and very much alive.” — Gill Broadhurst

10. “When, after almost a year of trying to get my child to acknowledge my presence as something more than just the hand that gave him food and drinks, our speech language pathologist (SLP) managed to get him to actually throw a ball back and forth to me. It was the best 10 minutes ever. Now he’s 3 and finally calls me “Ahme” (mommy) and, as I’ve told all my friends, he can sit and say my name all day long. I will never get tired of hearing it.” — Mika Clardy

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11.Hearing my daughter say ‘Mama.’” — Shen Mager

12. “When my daughter holds conversations with me before bedtime, we usually play this card game before I tuck her in at night. But just this year she decided she wanted to talk about her school day and what went on with her friends and her. It used to be that she would bring home a communication chart every day to tell us what she did in school that day and who she played with. Now she tells me everything that would be on that sheet all on her own. I praise speech therapy every day for this little gift.” – Jamie Rankin

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13. “My son is almost 6 and has epilepsy, cerebral palsy and a few other things. He doesn’t walk or talk yet. He may not be able to do those things, but he can crawl and he can feed himself some things. He can hug, he can give kisses and he can communicate a few basic wants. These are all things we never thought we’d see. I’ve never heard him say ‘I love you, Mommy,’ but I feel it with every hug, kiss and smile.” — Megan Churchill

14.My son saying ‘I love you’ back to me when I said it to him, just this year. He is 11 years old.” — Kelly Naumann

15. “My absolute favorite was my son’s first smile. It wasn’t his first ever. He was a typical kid until he contracted meningitis. After nearly losing his life, he was left with cerebral palsy, epilepsy, profound hearing loss and a significant cognitive delay. He didn’t smile and mostly cried for three straight months. When he first smiled it literally took my breath away.” — Rebekah Rhodes McClelland

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16.When my son, who was nonverbal, signed his first sentence: ‘Look, Mama, raining there (outside),’ in response to a sudden downpour outside our house. He said a similar sentence a few months later and hasn’t shut up since.” — Adrienne Braddock Conroy

17. “When my daughter was able to sit on one of her big sister’s favorite toys at a game arcade. I couldn’t control my tears and it was pretty embarrassing.” — Tala Rifai

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18. “Our 3-year-old daughter, post hemispherectomy, just learned to jump with both feet — a goal we’ve had for six months!” — Sandra Schiffli Salerno

19. “My daughter’s first milestone was leaving the hospital at 8 months old. Her second one was taking her first drop of food orally at 3 years old. The biggest milestone was proving the doctors wrong. She’s 20 now and walks, talks, breathes on her own and is still here — all of which I was told would never happen.” — Laura Kroeger Wright

20. “When my daughter, who has high functioning autism, brought her doll to the table to eat with us. She was 5. She’d never pretend played with her dolls before. I had a party for her and that doll that evening.” — April Charisse

21.My daughter learning to hold a spoon at 3 years old. She has no interest in grasping, unless it involves food.” — Lacey Smith

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22. “When my son was being tube-fed for over a month, and the doctors told me I’d never be able to feed him normally. I brought him home and got him on the bottle in a week. That was his first milestone, but he has overcome many others since. He’s my champion.” — Glenda Henzie

23. “My son who wasn’t suppose to ever talk or walk proved everyone wrong and is now running everywhere and chatters all day long.” — Ashtin Schissler

24. “When my son Brody started looking into my eyes to express his feelings.” — Laurie Ann Phillips

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25.When my nonverbal daughter started trying to sing along to the film ‘Frozen.’ She doesn’t sing the words, but the pitch and length of her sound is exactly the same. She amazes me every day.” — Gemma Bryan

26. “Her first birthday. It was so sweet after almost losing her.” — Melody Statham Cameron

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Dear Cerebral Palsy, Here’s Why My Son Is Still Winning

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Dear Cerebral Palsy,

We haven’t always known each other. Five years ago, when I was blissfully awaiting the arrival of my first child, I couldn’t have imagined we would ever meet.

You were something that happened to other people — something to be pitied and something I didn’t want to know. When people suggested we might soon meet, I feared you. I desperately wanted you to stay away from us. You seemed like the worst kind of demon.

But you didn’t stay away. It became inevitable that our paths should cross, and now, I cannot imagine life without you. It’s not always easy to get along with you. You can be difficult. Because of you, my son has to work harder at everything he does. Things that most people take for granted are a struggle for us, and it’s all your fault. It hurts my heart sometimes to see the hardships you bring.

But I am a better person for knowing you. Because of you, I love harder and more intensely than I would have if you were not around. I appreciate more, and I understand that the little things really are big things. I feel a pride that only comes from watching someone you love succeed even when the odds are stacked against him.

Because of you, my eyes have been opened to a world I barely knew existed, and I see value in people I was blind to before. Because of you, I’m part of a global community, a community of people who support me and my son. I’m now a cheerleader for other families, celebrating the achievements — big and small — of children everywhere. These are people I would never have had the good fortune of knowing if it wasn’t for you.

Most of all though, you’ve shown me you aren’t the worst thing that can happen. Cerebral palsy and joy can coexist. My son has cerebral palsy, but you don’t have him.

My son loves life. He has the biggest smile you have ever seen. He loves swimming, chocolate milk and trucks.

Thank you, Cerebral Palsy, for showing me what the biggest priorities in life really are — to be loved and to be happy. My son will always have those two things.

If life is a competition, he is still winning.

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Follow this journey on Joshua’s Story.

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 [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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Tonight, I Gave In to the Tears

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Tonight I gave in. I caved to the tears. You see, I’m not really a crier. It takes a lot to get me to that place. But tonight was the night the tears came, and when they came, they just wouldn’t stop.

Maybe it’s from the past several weeks having been a behavioral roller coaster when we’d been on such a good roll. Maybe it’s from cleaning up the same mess again and again. Maybe it’s from being “on” 100 percent of the time. Maybe it’s because every single night is a Russian roulette with whether or not either of us get a full-night’s sleep. Maybe it’s from fixing the same thing for dinner over and over because he refuses to eat anything else. Maybe it’s the uncertainty of what the future holds. Maybe it’s because everything that comes so easy for everyone else comes so damn hard for us, if even at all. Maybe it’s because almost everywhere we go, people stare, and my guard is always up.  Maybe it’s from feeling like no one understands, like no one “gets it.” Maybe it’s from feeling so alone in it all. Maybe I finally broke from the weight of it all.

Normally my blogs are positive; I do tend to always look at the brighter side of things. Tonight was not that night. Call it a pity-party if you want, but tonight was a night where it hurt to breathe. Tonight was a night where “super mom” was a human. And this human felt beat, alone, sad and far from “super.”

It’s rained all week in the town I live in. Ironically, I read a quote recently that said, “Even the worst thunderstorms eventually run out of rain.” So if I were to wrap this up with even a grain of positivity, here it is… 

Even the worst thunderstorms eventually run out of rain.

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An Open Letter to the People Who Feel the Need to Tell Me I Have My Hands Full

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Thank you for feeling the need to reiterate what I already know; I have more children than hands. Indeed, I’m not an octopus, although I continuously attempt to be.

Thank you for confirming my fear — that I’m perceived as a walking train wreck when out in public with my children. Thank you for acknowledging that I clearly don’t have things under control, despite my best attempts to plan otherwise.

Thank you for making me feel small.

I struggle with how to respond to your comment. Do I smile even though your comment doesn’t make me happy? Do I laugh with you (although it really feels like you’re laughing at me)? Do I shrug or nod in agreement with you?

Most of the time I feel the need to provide an explanation; Man plans, and God laughs often comes to mind.

But what you don’t know is my life is so much more full than you realize. What you don’t know is my eldest child can’t be the “helper” you say he must be. You don’t know he’s not just shy or tantrum-ing right now. You don’t know the amount of time I spend at doctors and specialists and hospitals with my hands full. You don’t know my enormous bag is packed with more than just the typical array of diaper bag goodies and that I always need to be aware of my child’s health and viability. You don’t know the sleepless nights of monitoring. You don’t know anything, really.

When I get out of my house on time, it’s an accomplishment. Hell, getting out at all is. Most of the time it’s for a doctor or therapist appointment, but that’s our life right now, and out is out. It’s the little victories that make our life full these days.

I don’t feel the need to comment on how light your load is. Wow, you have your hands free! Maybe you should help me, since I’m clearly encumbered. That would be rude to say, and I’m raising my children to be better than that.

So I say, thank you. My children, in all their unbridled glory and imperfections, are blessings, and yes my life may appear to be more than I can bear right now, but we’ve been blessed with a full one, and for that I couldn’t be more thankful.

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