From a Mom Figuring Out a New Autism Diagnosis

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Riggin.

We named our kid after a fictional high school football star (“Friday Night Lights,” anyone?) and our favorite former Washington Redskin. Everyone said our kid would be a badass based on his name alone, before they even met him. His twin brother would be the studious one, and Riggin would be the athlete. He’d be strong, a lady’s man and would stick up for his brother when the big kids called him a nerd.

Riggin was born eight weeks premature. We knew he’d have to play catchup and that things like his first laugh and first words would be delayed. At his 2-year checkup, I remember asking our pediatrician if he was on track with his speech; he only had a few words at that time and wasn’t making sentences. We’d ask him things and wouldn’t get a response. He’d throw monster fits over small things because he couldn’t communicate. Sometimes he’d line his toy cars up in a row, but couldn’t explain why. When he got really excited, he’d flap his hands around. The pediatrician assured me Riggin was fine; his speech would continue to develop, don’t sweat it. I wanted so, so badly to believe the doctor. All kids pitch fits, right? And get easily distracted from answering questions? He was probably flapping his hands because he didn’t have the words to express how excited he was to eat my cabbage rolls.  And, what’s the big deal about lining up cars? Maybe he was pretending they were at a McDonald’s drive-thu.

But that little voice kept asking me, What if there’s something wrong? So we got him tested for developmental delays. He was definitely speech delayed and would need speech/language therapy. But aside from his language, Riggin was a smart, averagely developed kid. He could sort objects like no one’s business and throw a ball better than Tony Romo (reminder: we’re Skins fans).

We knew, though, that hand flapping and lining up objects is a sign of autism spectrum disorder, so we also had him tested for ASD. At this point, Riggin was nearly 3 years old, and his personality was taking shape. He loved trains, superheroes and dogs (in that order). He had a huge imagination. He was friendly, sociable with new people and loved giving hugs. He did silly things just to make me laugh, and a few times when I didn’t feel like laughing, he’d put his hand on my cheek and ask, “You OK, Mama?” We were expecting the autism team to tell us to take a hike and quit worrying about our kid. Kids with autism aren’t imaginative, right? They don’t understand emotions or make jokes, and they really don’t like new people, right? But, we were wrong apparently, because they told us Riggin has high-functioning autism. They told us he flaps his hands because it feels good. They said he doesn’t answer questions or interact in conversation because he doesn’t know how. They said he throws fits over small things because to him they are huge things that seem impossible to get over.

The diagnosis was only two months ago, and I’m still very much coming to grips with what it means. My inner snark keeps suggesting maybe the doctors are whack-jobs who think everyone is on the spectrum. Maybe Riggin is just barely on the spectrum; maybe it barely even counts. I’ve a hard time thinking about the alternative, because that means he’ll have this disorder for the rest of his life. I’m so scared of what that means and how it’ll change my dreams for him. Will he be the “weird kid” who does weird stuff like flap his hands and mumble? Will sports be a no-go? What about dating? Can autistic kids date?

Then I realize my dreams for him need to change, because it doesn’t matter what “autistic” kids do — they aren’t Riggin, and Riggin can do anything. He can play sports, be an honor student, paint masterpieces and date a different girl (or boy, whatever, it’s his call) every week if he wants to. I shouldn’t be scared for his future, because it will be bright and amazing and uniquely his, no matter what challenges autism throws at him.

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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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Watch Disney Princesses Bring Magic to a 3-Year-Old Cancer Patient

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Madelynn Nelson, 3, was re-diagnosed with stage IV neuroblastoma two months ago following a period of remission, WLTX 19 reports. Because Madelynn’s favorite thing in the world is Disney princesses, The Make-A-Wish Foundation had planned to take her to Disney World at the end of the month. Sadly, Madelynn is not responding to chemotherapy and doctors think she may not live long enough to make the trip.

So Disney World came to her.

On a remarkable night in Irmo, South Carolina, Madelynn and her family received a visit from the Disney princesses themselves.

“I have just been praying for us to get to tonight so she can experience it,” Madelynn’s mother, Amanda Nelson, told WLTX. She says her family’s focus is on creating lasting memories with Madelynn and making every day a meaningful one.

See footage from Madelynn’s visit with the princesses in the video below:

To read more about Madelynn’s diagnosis, click here or search the hashtag #teammadelynn.

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When Our Pediatric Psychologist Asked Me a Question I’d Never Truly Considered

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Screen Shot 2015-01-07 at 12.14.55 PM Today is my daughter, Lucy’s 5th birthday. Every year when one of my kids has a birthday, several times throughout the day I think of what I was doing that very moment on the day of my child’s birth. I may remember when I was laboring in the shower with Eden,or when my water broke in the bedroom with Lucy. So I’m having those moments today, and they’re made all the sweeter by the fact that this is the first year Lucy really understands birthdays.

We’ve been to a couple of birthday parties recently, and she’s seen the fuss made over the birthday kid and that there’s cake and presents and having a birthday means that you’re the center of attention. We’re doing Lucy’s birthday party at a place with a bouncy house this year, so for a couple of weeks she’s been doing her Lucy thing of going over what the routine will be, exactly.

L: Me!

M: You, what?

L: Hop!

M: Oh, you mean you’re going to hop in a bouncy house for your birthday?

L: Uh-huh! Help me!

M: Who’s going to help you?

L: Pop! Op!

M: Pop’s going to help you and open the bouncy house?

L: Uh-huh!

And this goes on. We cover what we’re eating, who will be there, opening presents and even transportation because apparently she really wants to ride in her dad’s car. Anyway, the routine is the same every time. Last year, it was all still kind of mystifying. This year, it is on. And that is glorious to watch.

When you have a kid with special needs and you go through the long list of different doctors and health professionals, the first thing they want to know is if you had a healthy pregnancy. With Eden, who is a typically developing child, my pregnancy definitely would have been cause for concern. I spent the first four months miscarrying her twin. She was truly a miracle baby. On the opposite end of the spectrum, Lucy’s pregnancy was a piece of cake. I had virtually no morning sickness, a beautiful diet, a totally supportive partner and little stress. She even surprised us by coming ten days early, instead of making me wait until I’d made peace with being pregnant forever, like her big sister had.

So here we had this perfect pregnancy, a perfect delivery and a lovely, perfect baby. And then after the first year, we began to see that she is wired differently. We began the long diagnostic process.

In the early days, I cried. I searched for every little thing that might have caused Lucy’s challenges. I was devastated and angry and sad and scared. I’d lie in bed at night fighting hot tears and the knot in my stomach, just praying that everything would be all right. I felt like something had been stolen from her and from us. “Normal” had been stolen.

We weren’t having normal birthdays and Christmases. Playdates? Definitely not normal. Pre-school? Not normal. I wanted all of those things for us and for her. I wanted her to get attached to characters on television and develop obsessions that I could indulge. I wanted her to be able to eat the damn chili con queso and flour tortillas. I wanted her to be able to tell someone her name and how old she was. But we didn’t get that.

In this last round of clinical assessment and diagnostic stuff, we sat in front of a pediatric psychologist, asking if she thought Lucy would one day be normal. She just looked at us and said, “What’s ‘normal?’”

And that changed something for me. Lucy is 5 today, and she’s excited that it’s her birthday. If you ask her whose birthday it is, she will yell, “ME!” If you ask her how old she is, she will hold up all of the fingers on one hand. If you ask her her name, she still can’t tell you; it’s still locked inside of her, but she’s such a tenacious kid and hard worker that I believe it will come.

If I could go back in time to when we got our first diagnosis and tell myself anything, it would be that we would have all of the joy and sweetness and proud moments that we might have if Lucy’s brain was neuro-typical. Because we’ve had all of that and then some. I would tell myself that it wasn’t going to be all right. Actually, it was going to be wonderful. And I would tell myself not to worry; we would have normal. Because we do. It’s just our normal. It may not look like my friends’ normal or the normal I’d envisioned during my perfect pregnancy, but that is OK. After all, what is “normal” anyway?

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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This Is What It Feels Like (in GIFs!) to Parent a Child With Special Needs

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Parenting a child with special needs is an experience that can be difficult to put into words. So, we at The Mighty thought we’d try our best to express what it can feel like through GIFs!

Being a parent isn’t easy. Most days it feels like everyone needs something from you. At all times.

 

You often think you’ll never get a full night of sleep again. Miss you, sleep.

 

Your days are filled with a million little challenges, and sometimes it can leave you feeling astronomically overwhelmed.

Every once in a while you just need to break down. (And that’s OK). 

 

Because you always bounce back.

 

Even the smallest successes will make you feel like this…

 

Seriously, the teensiest, tiniest successes will have you like…

 

Celebrate. You deserve it.

 

Occasionally you need a little room to breathe.

 

Other times you don’t mind the lack of personal space.

You’re an ol’ softie now and find yourself crying often.

 

But if it comes to protecting your kid, everybody better GET. OUT. THE. WAY.

 

You discover all kinds of things about yourself you never knew.

You’re stronger…

 

Wiser…

 

And more fearless than you ever thought possible…

 

Of course it isn’t easy, but then again, nothing worthwhile ever is.

 

And in the end, you love your children, no matter what.

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To My Son’s Autism: I Know Who You Are

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Listen, I know who you are. And although I can’t see or touch or feel you, I have looked you square in the face for the past ten years.

You are a mystery — an enigma — and you baffle teachers and therapists and coaches and bus drivers. You baffle me. And yet, I feel I know you almost better than I know myself.

You are smoke and mirrors. You are illusion. You are the last kid out in a dodge ball game, ducking and weaving and escaping until the rest of the players give up and go home.

You are the panther who demands melatonin for six hours of sleep at night.

You are the cruel snake of anxiety, winding and curling around my child’s soul, whispering nonsense about dogs and wind chill factors.

You are the thief trying to steal my son from me.

You are Autism.

I hate you.

That’s right, I said it. Autism, I hate you.

I hate the way you make him touch all of his food and dip his fingers in every glass of milk before he can take one taste.

I hate that he won’t play sports because of you.

I hate how lonely you make him.

I hate the way you force him to painstakingly search for words while the rest of the world rushes over him in a tidal wave of jokes and irony and dialogue and language.

I hate that his poor brain is always turning, churning, obsessing, racing from maps to music to when Smucker’s first made strawberry jam. I want to scream at you to leave my son the hell alone, to let his mind rest for just one second.

I mean, honestly, he doesn’t even like strawberry jam.

And how about his body? Why can’t you just let his body be still? Watching you operate his arms and legs and hand, making him stim and jump and grunt through every room is like watching a puppeteer control the strings.

I hate the way you make me feel. With you around, I am stupid and tired and useless. I am unsure.

Last week, our family of seven drove to Connecticut to visit my sister. Please, don’t even act like you don’t know what I’m talking about, because I know you were there.

I know because for almost the entire two-hour drive, my sandy-haired son sat in the second row of our minivan and demanded we play and re-play the same three songs over and over, at precisely the same volume. If it wasn’t the right song in the right order at the right level, he shrieked like a madman.

You drove all of us crazy.

I want to tell you a secret. I know you think you keep all the secrets, but I also have one: every once in a great while, when I’m frustrated and lost, I go up into our bedroom and I cry. I sit in the big leather chair in the corner by the window and I cry for the boy who wants to live alone but may not, who wants to cross the stage during graduation and have play dates and open his own bakery even though at 10 years old, he doesn’t understand money. I cry for his naiveté and his innocence, and for the way his heart and mind cannot keep pace with his tall, growing body. I cry for the boy who might have been.

Me and you, we spend the day engaged in a tug-of-war, except instead of a long rope, we each hold one of his hands. I pull him toward me — into a world full of high school diplomas and karate and dollars and cents — and you yank him backwards into a dark spectrum abyss where apparently Nicki Minaj holds concerts around the clock.

About an hour before we got to my sister’s, you released your hold over my son and you let him sleep. When I looked into the backseat and saw how his face had relaxed, his breathing settled and his eyes closed, I felt grateful he could rest.

But you woke with a vengeance ten minutes from her house.

“Why? Is the radio off? Where? Are my songs? Turn them on, turn them on, turn them on.”

And once we pulled into her driveway, you and I began our contest of tug-of-war once more.

“Her dogs. The dogs! I don’t want to see them.”

“Jack! Come on! You aren’t afraid of dogs anymore, remember? Now that we have a puppy?”

But you couldn’t let it be, could you, Autism? You sidled up and grasped his fingers.

“No,” my 10-year-old son whined and cried in his unusual grammar. “No dogs! No dogs! Put away them! Into the basement.”

After about two hours at my sister’s house, we both grew tired. I don’t know about you, but I had a headache.

I could feel you, sitting next to me on the couch watching all of kids play and dance and open presents. I could practically hear your ragged, uneven breathing. But for the first time all day, we each let go of his hands and stepped away.

And as we slumped against the cushions, I noticed her dog, a big chocolate lab with a graying muzzle, lying in the middle of the floor. I saw my tall boy step carefully around him at first, then over him, then plop down next to him with a sigh.

And I realized that I can’t live with you and I’ll never live without you, because I know you aren’t going anywhere.

And neither am I. You must believe me, Autism, when I tell you that I will never pack up my ball and go home.

But sitting with you on the tan couch in my sister’s living room, I thought that maybe, maybe, we can be friends. Tentative, reluctant, quiet, unlikely friends.

You are giggling now, Autism, I know you are. You are smirking and grinning in the dark corner. Your eyes are shining at me like the smuggest Cheshire Cat. You know. You know I could never hate you.

Because, like the quintessential tug-of-war, I, too, am pulled in two directions at once.

For all the things you make him — rigid and bossy and lonely and sad — you also make him funny and lovable and charming and smart. In some absurd way, you make him whole. To love him is to love you, too.

And oh, how I love him.

Once in a while I cry for the boy who might have been, but every single day I smile for the boy who is. I smile, laugh, chuckle, giggle and love.

I know who you are.

You are the quiet joke at the dinner table that takes everyone by surprise.

You are the quick one-armed hug from behind and the first bite of sweet chocolate cake.

“Mom. This one. I did the frosting on myself.”

You are opportunity and risk and chance. You are possibility and hope. You are progress.

You are the 10-year-old boy in a red turtleneck, his arm slung casually around a big, gentle dog.

You are Jack.

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In peace and friendship,

Jack’s Mom

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10 Pieces of Advice for the Terrified Mom Standing in the Parking Lot 10 Years Ago

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I’ve never been one for remembering certain types of anniversaries. I admit to forgetting the birth dates of beloved grandparents long passed. I have only a passing acquaintance with the month and year they were buried. This doesn’t mean I don’t pay attention to certain milestone events — it’s just that I don’t feel constrained to remember them on one particular day.

I keep special people alive by talking about them with my sons, remembering them when the scent of homemade chocolate chip cookies assails me or when a certain smile on my eldest son’s face reminds me of a loved one who’s gone. Remembrance is random for me, usually elicited by a specific trigger.

And this morning I had that moment when I came upon some old papers from Kennedy Krieger.

My eldest son, Justin, who has severe autism, was officially diagnosed with moderate to severe autism ten years ago in the fall of 2004. He’d graced this earth for almost a year and a half at that point, and quite frankly, the diagnosis was not a shock to me or his father. I’d had questions about his development dating back to his sixth month of life, concerns that only deepened as we compared his milestones with those of our friends’ babies who’d been born within a month of ours.

We weren’t stunned that day in Baltimore — at the time, we were mostly saddened and deeply scared. The words “pervasive developmental disorder,” while not surprising, did put a finality on the situation, particularly the part about the disorder being lifelong. I can recall heading out to the parking lot with my spouse, Jeff, holding Justin in one arm and my husband’s hand in the other. We were both exhausted, as our boy had been up several times the night before, plus we were simply overwhelmed. I remember feeling angry about the diagnosis, but mostly, I was just tired. Tired of sleepless nights, tantrums and the sinking feeling that I wasn’t up to the task of getting my son what he’d need for the next 80 years.

I should mention that I’m a planner.

That moment in the parking lot was a pivotal one for me, and as I sat this morning clutching the very papers we walked out with that day, I had such a strong desire to go back in time and tell that terrified mom a few things about the future a decade later. Here are the top ten things I wish I’d known then:

1) There will be hard days ahead, sometimes grueling. There will also be moments of indescribable joy. You will gain the perspective to understand that the difficult times will not last forever, even if it seems that they will.

2) You will still have a social life, even if you lose some friends along the way. You will make friends with all of your sons’ therapists.

3) The Internet will tell you he won’t talk or read if he’s not doing so at 7. He will do both at 11, and the best part won’t even be the reading or talking. It will be the abundant pride he shows you when he accomplishes these goals.

4) He will, eventually, spend most of his days happy. The things that make him happy are not any of the things you anticipated would make him happy. You will be OK with this.

5) You will still worry compulsively about what will happen to him when you and his father are gone. This will never change. You will learn to live with it.

6) Your days will often remain challenging, but with his maturity and increased independence things will get easier, just like they generally do with neurotypical kids.

7) Your marriage will not fall apart. It will not only survive the bumpy parts, it will thrive.

8) You will form great friendships with other autism mommies. They will “get it.” You will cherish them.

9) Chocolate (often accompanied by a good glass of wine) will continue to help considerably.

10) Ten years later he will still look at you with the same depth of love with which he looks at you now, only the bond between you will have deepened indelibly. Those moments of connection with him will carry you through.

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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.

Want to end the stigma around disability? Like us on Facebook.

And sign up for what we hope will be your favorite thing to read at night.

 

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