A collage of two photos. On the left: a sleeping baby girl. On the right: A small girl with a blanket over her head

The Important Reason I Need to Thank My Daughter

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On the day you were born you were placed in my arms, and I held you so very close, caressing your face. I kissed your sweet little baby nose.

At home I held you tight and rocked you in a warm embrace. Oh, how I loved kissing your kissable face.

Weeks and months went by so fast, as they always do, and I watched you grow. You crawled, you walked and climbed. You smiled at me when I’d say, “No.”

I heard you say, “Dada Dada… Mama Mama.” You loved to play peek-a-boo. You were our happy smiling baby; you’d giggle and laugh and then we would laugh too.

Then… I watched as you stopped looking at us; you didn’t want to be held or hugged or kissed at all. I watched you rock and bang your head, flap your arms, spin and twirl. You stopped saying “Dada Dada… Mama Mama,” and you became a different little girl.

I watch you now as you try so hard to get words out of your mouth that you just can’t say; you scream and cry and become frustrated at fighting so hard to find your way.

I miss hugging you, kissing your beautiful face and sweet baby nose, holding your hand and picking you up.

You’ve begun to let us in and become a part of your unique little world, and you’ve shown us that you are still our beautiful, happy, smiling baby girl.

You’ve taught me how to fight and use my own voice and to be your voice too. I’ve learned so much about life, love, patience and hope all because of you.

You came into this world early and fast, dancing to the beat of your own drum. I still can’t believe what a beautiful gift I’ve been given. Thank you for choosing me as your mom.

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The Facebook Post I Made the Day My Daughter Was Diagnosed With Autism

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Below is the letter I wrote two years ago on Facebook to announce our little girl was diagnosed with autism. Now, I often look back at this post (a blessing and a curse of being a writer). My first impression is that this women was fearless. She came home right after her daughter was diagnosed with a lifetime disability and made the news public to all 204 of her family and friends. She was unashamed, blatant, bold and, above all, honest. This was my post…

Almost from the first week we brought Gabby home, I knew something was different with my baby. She would cry for two-four hours straight at night, almost every night. I would nurse, rock, walk and bounce her till she passed out. The doctors had no clue. We did all the tests they could think of, and she was labeled a difficult baby.

By 2, she was hardly talking, but physically she was kicking all our butts. As she grew stronger, it was harder and harder to control her tantrums and fits. We gave up going out to eat, and soon we stayed close to home or parks unless we had two people.

By 3, she was in speech and occupational therapy, and she showed little to no improvements. She grew taller and her weight soared to a whopping 40 pounds. We had more people than I can count tell me I needed to discipline my child or spank her, but I knew that just made the tantrums worse. We had to bear hug her and pat her back till she would calm down, and then it was like nothing happened. For the last two years I’ve been the lady in Wal-Mart holding down my girl while people walk by and see a 3-year-old having a tantrum.

Last week after running a bunch of tests, Gabby was diagnosed with autism. We’re both relieved and devastated with the news. I know God has a plan for our life and Gabby’s as well. So for now we are going to be faithful and trust in him to lead us through the next chapter with our little girl. Prayers are welcome and appreciated.

Then I remembered the feelings that went along with this post: I was scared. Probably the most scared I’ve ever been in my life. As I posted this message to my family and friends, I realize I did it because I was so afraid that if I didn’t say it out loud that day, I might never have the courage. I blurted it out for my family and friends to see because I thought if I didn’t share it, it would be taken as me being ashamed of her or trying to hide it. I came right out with it and took the “loud and proud” approach to sharing the news that my child was diagnosed with autism when in retrospect, I was devastated.

So devastated that I spent the majority of the next two weeks heartbroken and crying. This was mostly because I didn’t understand what this meant for her and how we were going to manage. Not knowing if she would be OK was the most frightening part. Next, I spent a few days being pissed off and stressed and asking God, “Why us?” Finally, I crumbled for a few days and hid in the house. Then, I finally got up. Not because I wanted to get up, but because I had a husband leaving on a trip and a daughter to take care of. Just because I was grieving didn’t mean I didn’t have responsibilities. So I got back on the horse, you could say, and I got on with our life.

I scoured libraries and the Internet trying to find out as much as I could about autism. I would take care of my child all day, and at night I would be obsessed with reading and researching everything I could find out about autism. I made appointments and kept up with her therapies, and life kept going.

Looking back, if I could go back to the day of my daughter’s diagnosis, I would tell myself that it’s OK to grieve privately. It’s OK to not shout out the news that your dreams you had for your child’s life are changing. It’s OK to not have a plan. Your journey is going to be bumpy, and you’re going to run on broken roads at times, but in the end you still have the beautiful, enchanted daughter you started out with. You’re still going to have wonderful moments when she shocks you at her abilities and actions. Yeah, your dreams for her are going to be different, but they will not be less.

Don’t worry so much. It’s all coming; just wait and see how wonderful it all will be.

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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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My Daughter's Unusual Breakfast Order Changed the Way I Look at Life

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I’ve shared a lot of stories about my son and how his autism has taught me some valuable lessons in life. But I’ve never shared a story about my typical daughter. She’s 20 and home from college for the holiday break. The other day, we were driving to pick up some breakfast at a local fast food restaurant, and as we were sitting in line, waiting for our food she says, “Make sure to ask them for jelly!” My response: “For what?” Her response was, “For my hash browns.” In shock, I said, “You eat jelly on your hash browns?!” She then proceeded to explain how it came about that she learned to like jelly on her hash browns…

“When Papa used to drive me to school every day, we’d always stop for breakfast, and he would get jelly for his hash browns, and that’s when I tried jelly on my hash browns and have eaten them that way ever since. I really miss Papa driving me to school every day.”

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There it was. By the look in her eyes, I could see the fond memory playing in her mind. We drove down the road and laughed as we talked about other things, but the thought of hash browns and jelly stayed with me. Or maybe it was the thought of what hash browns and jelly really meant.

Over the holidays, I attended the funeral of my boyfriend’s father. Throughout the services I could see by the looks in tear-filled eyes as different family members, I’m sure, replayed each of their own “hash brown and jelly” moments.  It was hard to watch but served as a sobering reminder to be grateful for each and every moment we’re given with our loved ones and to soak in the seemingly meaningless moments that somehow later turn into the most meaningful memories.

As smart as human beings are, we tend to over-complicate life and our search for its meaning. The conversation with my daughter and attending the funeral have caused me to stop and reflect on it. Is the meaning of it all in the “hash brown and jelly” moments? The moments we don’t really realize are moments until they’re a memory?

This has all made me look at things from a new angle. One of my sweetest memories about my son was the first time he told me, “I love you, Mom,” using his iPad. But truthfully, I’ve never thought about how he may remember the same moment. Maybe his memory is “I finally got to tell her I love her!” I remember how his face lit up when we gave him his swing set. I remember him using his iPad to tell me, “I am happy.” Perhaps his memory is, “Somehow they knew what I wanted.” I remember the first time we drove past our local Sonic restaurant and my son said “mik” (translation: milkshake). I’m not going to lie on that one, I damn near wrecked my car in shock. Maybe his memory was, “That was the day I was heard.”

It’s easy to replay our own memories but not as easy to imagine ourselves in the memories we leave for those around us. Hash brown and jelly moments aren’t planned — they just happen. They can often happen in the day-to-day hustle, when we tend to go on autopilot and aren’t always paying attention. We sometimes don’t know that they’re moments until they become a memory. So don’t forget to smile, don’t forget to hug, don’t forget to laugh  and don’t forget the jelly for the hash browns!

But most important, don’t forget to pay attention to it all.

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The Odd Thing About This Picture Taught Me a Lesson We All Need to Learn

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group of football players and author's son standing outside the circle

Does anything look odd to you?

Possibly not – until you recognize that #39 spends 90 percent of his time not in “the group.”

#39 is my son, Tucker.

This is through no fault of his coaches or teammates. It’s just how he is — rarely a part of the group.

Parents of children on the spectrum, hold your breath. Well, honestly – any parent, hold your breath. This post may make you cry.

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In fifth grade, a researcher at a local university intereviewed Tucker. The researcher, who was studying children with high-functioning autism, contacted me to see if I thought Tucker would be a good candidate. I replied with an emphatic yes. Tucker is his own best advocate; he’s an advocate for other children on the spectrum.

Since he’s a minor, I stayed for the interview. What a phenomenal experience — to hear your child accurately describe his difficulty with peer relationships is amazing and heartbreaking.

The researcher began by getting to know Tucker. About 15 minutes in he began asking the questions.

(R=Researcher, T=Tucker)

R: “Do you know other children with austim?

T: “Oh sure. A few kids at my school. But we’re all different. Do you know about the spectrum?”

R: “Yes, I know about the spectrum. So, are you friends with them?”

T: “Kind of. Sort of. I mean, I guess so. Not really. I know who they are, but they wouldn’t be overnight friends.”

R: “OK. How about other kids at your school? You’re really funny and seem like an awesome kid; I bet you have lots of friends.”

T: “No, I don’t.”

R: “Really? I’m sorry, Tucker; that surprises me. I thought you would have lots of friends. I’m really sorry that you feel you don’t have friends.”

T: “Oh, I have friends. Lots of them. My mom’s friends. The people that she works with really like me. Then I have my dad’s friends; I have all kinds of grownup friends. My teachers are my friends too – and my coaches – Coach Velky, Coach Chaplin, Coach Staack, Coach Snyder, Coach Eckenrod, Coach Leonard. They are my friends. And Lisa from Kwik Star – she’s my friend. She always makes me smile and always talks to me. It’s OK though. Really. The kids make fun of me behind my back when they think I can’t really hear them. I can tell they don’t really want to be my friend. They don’t choose to sit by me. They don’t include me in their parties. They don’t take the time to try to understand. So, I decided to just be friends with grownups. Really it’s a lot easier. I know they will take the time to try to understand me. They will be kind to me. They will not make me feel sad. So, I just choose to be friends with grownups.”

The researcher just looked at me. I stared at Tucker with tears in my eyes.

When we got home, he went to play with our Xbox.

When we got home I went into the bathroom and cried.

I didn’t cry because he has difficulty with peer relationships. I knew this would be a factor – I was anticipating that difficulty. I know he has several boys who are friends – while he may not be on birthday party lists – they would never allow someone to be mean to him.

I cried because he was (and is) OK. He understands his experience. He was (and is) mature beyond his years – making the conscious choice to be with those who want to be with him and not worry about those who don’t.

So, that picture above? It used to bother me – but it doesn’t anymore.

I’ve realized that if it doesn’t bother Tucker, then it cannot bother me.

Tucker has taught me so much about what it is important in life.

Being with those who want to be with us… not worrying about those that don’t. 

It took me 38 years to learn that; it took him 10.

Read more from this journey on 366 Days of Autism.

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'What About Me?': How My 3-Year-Old Is Dealing With Her Sister's Autism

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“Mommy, I have asthma,” my 3-year-old said to me.

I answered, “Yes, you do,”

“Mommy I have eczema.”

Again I said, “Yes, you do.”

Then my 3-year-old looked at me and said…

“Zoey has autism.”

I looked at her and said, “Yes, baby, she does!”

My 3-year-old is having a hard time adjusting to all of this – as we all are – but she doesn’t understand. After all, how do you explain all of this to a 3-year-old? I tell her we’re trying to help Zoey learn and talk, just like she does.

My 3-year-old wonders why her sister screams, throws herself, throws things across the room, bites, spins, hits, and why her sister doesn’t talk to her?

She wonders why we have people (therapists) in our house every single day, and she gets jealous that Zoey gets all this special attention and all these different toys to play with, even though all of the therapists include her in the activities and play.

“What about me?”

That’s what I hear come out of my 3-year-old’s mouth multiple times a day. “What about me?”

It’s hard being a mom – tougher when you have a 3 and a 2-year-old. Yup, 16 months apart! And it’s even harder being a mom when you have a 3-year-old who has anxiety, debilitating eczema, asthma and is feeling left out… and a 2-year-old who is nonverbal (starting to say a few words… yay!), has autism spectrum disorder, global developmental delay, sensory processing disorder and possible obsessive-compulsive disorder.

That’s not just hard; it’s heartbreaking.

But, you know what’s not hard? Loving them. I love them with everything in my being; I would do anything for these two girls, and I make it my mission to let them know every day that I love them both.

So when my 3-year-old asks, “What about me?” I pick her up and I snuggle her and I hold her tight and I say, “You never have to worry; I would never forget you. I will never leave you out, and I love you forever my big girl!”

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To My Son's Doctor, This Is Why I'm Willing to Overlook Your Staff Problems

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I hung up the phone with tears in my eyes.

The office had not even sent the paperwork yet.

Two weeks… wasted.

Two weeks of my son being in increasing pain, complete overload and struggling to enjoy any of the Christmas season.

Two weeks of waiting by the phone for the specialist to call and schedule an appointment.

Two weeks… gone.

Why?

According to the gal on the phone, “Jenny’s been working on it.”

It’s a fax. It’s a fax with test results and documents that I hand-delivered to the office two weeks ago. Even if it requires an extensive cover sheet, does it really need to take two weeks, Jenny?

Four years ago, my son melted down in the waiting room — like for reals melted down. We’d been there for approximately an hour with other children crying, playing, throwing toys and being kids – my son withdrawing further and further into himself to escape the sensory overload. I tried to distract him with the office fish tank, the book we brought, a treat. But an hour is a long time for a little boy with autism. It’s also a long time for his momma.

photo29 When the nurse finally called his name, she shamed both of us for his behavior, saying, “I guess someone needs to learn how to be patient.” I smiled a weak smile and begged her with my eyes to just.stop.talking, all the while thinking, “If you think that was bad, just wait ’til you see what happens when it’s time for his shots.”

To My Son’s Doctor:

None of this was you, specifically. It was your staff. It was Jenny. It was the appointments booked prior to ours that day. It was the fax machine.

And although I think it’s extremely unprofessional, it doesn’t matter.

It doesn’t matter because you know what?

I am willing to overlook all of it.

Although I think you may have some serious personnel issues, not to mention office management and paper flow concerns, my son needs you more than any of the other people in your office.

You make or break us.

You either take him seriously or not.

You either listen to my concerns and respond or chalk it up to one more overbearing, hysterical momma.

You either affirm us or choose to show us how much more you know.

The best doctors I’ve known, always, always, always choose the first option.

So before I answer the obligatory, “What brings you in today?” please allow me to first share this…

It’s a delicate dance, the dance of a mother in the doctor’s office. I know you have power when it comes to my son, lots of it. You decide what happens next, and you decide it in about seven minutes.

I know it’s important for me to make a good impression, to be credible and to seem educated. I also know it’s important to not seem too credible, too educated or too on top of it. It’s worse when you think I’ve done a little too much internet research and possibly jumped to too many conclusions. I know this. And so I dance.

The truth is, I’m so grateful for you and the hope you bring. I’m thankful you worked so hard in medical school and in all that is required to be a doctor, so my son can benefit from your knowledge. I’m thankful I live in a country where he has access to the care you provide. I have so much respect for you.

I also spend days getting ready for our visits. I prepare my son, in an effort to avoid meltdowns over things being unfamiliar and not going as planned. I prepare myself, thinking about how best to communicate my concerns. I write down talking points and plan to get up a little bit early the morning of the appointment to actually take a shower, put on make-up and wear pants that would not be ideal in a yoga class.

The truth is, I lie awake the night before, and I pray I will communicate well, that my son’s behavior will not be a distraction and that you will have the wisdom and discernment to help us figure out what to do next.

You may not know this, but as much as I want an answer, I’m OK if you don’t have it. I’m OK with you saying, “This is unusual. What do you think based on your daily experiences with him?” or “I need to do some research on this – his symptoms are not in line with a typical diagnosis.” Please do this! Please do this rather than dismissing him and his needs. Do this rather than assuming that everything must instead be fine.

Because it’s not fine. It hasn’t been for years.

I made this appointment and suffered your office staff and the grumpy nurse because I know that he needs you. Therefore I need you.

I’m so grateful for your time. I’m so grateful for your expertise.

Now, please let me share with you what brings us in today…

This post originally appeared on Not the Former Things.

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