Michelle's two daughters

“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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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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As I walked out the door of my triplets’ bedroom, my daughter, who I call “Sunshine,” did her typical end-of-the-day statements.

Sunshine: “Goodnight, Mommy”
Me: “Goodnight”
Sunshine: “Happy Dream”
Me: “Happy Dream”

Sunshine repeats these closing statements again and again as you walk out the door. We think it’s partially because she has to have the last word in everything. It’s a ritual she began a few months ago. And, every night I still hold my breath, waiting and hoping.

You see, once, out of the blue, as I was saying good night and only expecting a response back from Sunshine, I heard a second “Happy Dream” from my other daughter, who I call “Princess.” My mostly nonverbal child was wishing me a happy night just like her sister. Of course, I rushed back into the room, kissed Princess all over again and insisted she too have a happy dream of her own.

little girl on the school bus It seems a small event, and yet, to any mother of a child with speech or milestone delays, a moment like that makes your throat catch and brings tears to your eyes. It’s not just the moment in itself, it’s the uncertainty of whether the moment will repeat itself at all or with any regularity. It’s a moment you simply may not get again. It’s a moment to treasure.

Every school day I stand by the bus as Princess and my third, “Angel,” get buckled into their seats. I wait and I wave. When Grandma is there she watches me and says something like, “Do they see you?” or “I don’t think they care about waving today” and I never answer those statements. I wave goodbye every day until the bus turns left, and they can’t see me waving.

little girl being helped on the school bus Have my two autistic daughters ever waved back? No, not yet, but I still keep waving, because I’m Mom, and that’s what moms do. Because one day, my girls will wave back; one day, “bye-bye” will be part of their social world. Or, because one day there will be another moment, like when Angel looked directly into my eyes with recognition and pushed her tiny hand against the bus window as I waved. She kept her hand on the window until the bus turned left and I couldn’t see her anymore. So, yes, I wave. I wave every day.

Today’s post is my gift to all mothers of children with milestone delays or delayed development. We strive every day to teach our children, to presume competence, to hold our expectations high enough, to embrace our child’s differences and yet carefully recognize the fact that it could take up to 2,000 repetitions for our child with special needs to learn something that a typical child will likely learn in 200 repetitions. We balance expectations every day — not too low, not too high and realize that in addition to being Mom, we get to play therapist to our special children. Sometimes there are those days when we’d give almost anything to just be a parent, a simple, run-of-the-mill parent with “typical” expectations. Then without warning, we get a moment. A “Happy Dream” moment, a “wave bye-bye” moment, and all of a sudden nothing else matters but that moment. That moment when you absolutely, positively know how lucky you are to have this special child who shows you what life and love and joy really are.

three sisters in play cars

This post originally appeared on The Tripped Up Life.


My youngest son sat in a seat on the crowded Greyhound bus. We were traveling as a group of three, two of us found seats together while he sat alone with a stranger. I kept asking if he wanted to sit with his brother. He stared at me, not speaking.

As we traveled, I asked if he was hungry; he gave an almost invisible shake of his head. I asked if he needed anything; he looked at me and shrugged.

Everyone stared, and I could hear the odd whispers. He should at least answer, they claimed. Kids these days, they mumbled.

I know more than they do. He’s uncomfortable in crowds, nervous about the trip, handling things well. He sat quietly the whole way and barely saying a word.

Then…

We were waiting for our next bus, a transfer in Dallas, when a gentleman asked for our attention and admitted he was humbling himself before the crowd. He needed $18 to make it home for Christmas. He understood we were all struggling, but could we spare some change? A dollar?

As I reached for my dollar, my youngest son pulled out the money he’s been saving for weeks — money for snacks on the trip and gifts for his brothers when we reached California.

Quietly he gave the gentleman $20. He got him home for Christmas.

One of the whispering women from the previous bus saw the sneaky transaction and came over to hug him. She said to me,”You are raising a wonderful son, Mamma. He was so quiet on the other bus, I didn’t know…”

We wished each other a very Merry Christmas and boarded our separate buses.

Sometimes “polite” is overrated.

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This post originally appeared on Autism Answers With Tsara Shelton.


The other day we had a few girls from the neighborhood over. I was sitting, having a cup of coffee and talking to my best friend, who happens to be the mother of one of the girls. I heard another little girl ask my best friend’s child, “What is wrong with Gabby?”

This is a moment that usually causes me to cringe because even though the girls are just playing in my living room with toys and watching a Disney movie on TV, this one’s already figured out that my daughter is different. Without any meltdowns or tantrums, this new child has caught on to my daughter’s disability.

I hold my breath and wait to hear her response. My best friend’s daughter smiles and says, “Well Gabby has autism, and that’s what makes her special. She lives in a world that is different than ours…kind of like her brain does not work the same way.”

The other little girl says, “Is that why she is weird?”

My best friend’s daughter laughs and says, “She is not weird; she just likes to play ‘make believe’ a lot, and she really likes horses. You just have to play the things she wants to play, and if she gets rough you have to tell her mom. She doesn’t like scary movies, and she cries a lot some days, but her mom is the only mom in the neighborhood who will let everyone come inside, and she always serves snacks and drinks. Just give her some time and you will see the real her.”

Their conversation only lasted a minute, but what I learned in that minute is other children can accept my child, but they will not be fooled. They know pretty soon after meeting Gabby that she’s unique. I’ve never been secretive about Gabby’s disabilities. I often speak about the challenges and triumphs of our little girl to others.

three young girls watching a show

My child stands out from the bunch; she probably always will, but listening to this little girl’s definition of autism and then having them play with Gabby lets me know she will continue to spread awareness. When she runs into another boy or girl in school, they will understand a little better what autism is. It’s not something to be scared of. “Autistic” does not mean they can’t be friends. It just mean an individual is unique but wants to play, just like every other child. A little patience and understanding is required.

This little girl took the facts a friend shared with her and played for the rest of the afternoon with my little girl. She ended up having a great time playing horses. Not all days go like this; some days my child is upset with the other little girls, and we have to close our door and send everyone home. But today we made a new friend, and the girls got to play inside on a cold day. My child got to experience normal play with a group of girls, and that is always my goal.

Despite Gabby being different, I’m firmly committed to her being part of our community. I drag her to Sunday school, even though she doesn’t make it in the class very long. Other children are exposed to her for a short while, and that’s important for her and them. One in 68 children are affected with autism today; my child may be the first autistic child these kindergarteners get to know, but she wont be the last.

When dark clouds appear above my head and life with a special needs child gets me down, I force myself to push away the darkness and live in the light. I remember we need to go out — not for Gabby or me — but for all the other little children struggling with autism. I hear much too often moms of children with autism saying, “It’s not worth the hassle to take her to the fair.” I would agree with them on that statement; it would be easier to keep the doors closed and let Gabby play by herself. That’s where she’s most comfortable, and no outside influences will push her outside of her comfort zone. But if any child needs to be pushed, it’s an autistic child. I cannot keep her in a perfect bubble or world for long. As much as I would like to keep my child safe and have no one question or make fun of her, that’s not reality. So I push her to events in our community, church and school, not because my child enjoys those events so much, but because we’re going for the autistic children coming after us. Just like the parents before us who pushed their children into our communities, we must continue to do the same.

We have to keep going, pushing and being seen. We have to keep having conversations with strangers and our children’s friends about autism. Putting my daughter out in the world, making her uncomfortable is the only way I can make social interaction easier for her and others around her. Practice makes perfect!  So practice we shall.


Kerry Selfie A few weeks ago, I wrote a letter on The Mighty about the one that got away. Growing up, I never thought I was going to have a girlfriend because of my sensory issues, delayed speech and eventual lack of ability to talk to others for long periods of time. After two decades of therapy, I overcame a lot of my obstacles. Today I’ve become a national speaker, appearing at more than 400 venues in the past four years. During this time, I’ve had four amazing girlfriends who taught me a lot about what it means to be in a good relationship.

I was 18 when I fell in love for the first time in my life. I told myself then that I wanted to write a book to help others on the autism spectrum understand and succeed in relationships. Seven years later, during my break up with my recent girlfriend, I was a complete mess. I did everything I could to seek out help to fix the things that went wrong in the relationship. I wanted a second chance so I sought out books, professionals, autism life coaches — basically everyone I could find to work on myself.

This all helped me finish my own book. And as much as it became a self-help guide for others, I wanted to do something special for the one that got away to help her feel special and loved if she read it, too. That’s why there’s a sunflower on the front cover. I gave her a sunflower the first time I told her I loved her. I’ve also decided to donate 50 percent of the proceeds to Autism Speaks and the other 50 percent to one of her favorite charities, Best Buddies. The last thing I did with this book was write her one last “I love you” letter.

And I wanted to share that letter with The One That Got Away and with any adult on the autism spectrum:

If you ever come across this article I hope you know I really do love you and I truly didn’t understand how things were bothering you. I hope if you ever read this you’ll watch the movie “Adam” because it depicts how an adult with autism can be blind to others’ perspectives in relationships.

Growing up, I had to be the guy who constantly worked on things so I could have a life where I could get to a point where I could have a relationship. I had to make my therapies my 24/7 job. I’ve seen so many relationships where people who are on the brink of breaking up say they can change. But they don’t mean it. For me though, changing is something I’ve had to do my entire life.

Hopefully, if we ever do get to communicate again, I can show you what I’ve been working on to be a better partner…

I’ve spent so much time trying to overcome my obstacles as a child. One thing I say is, “Autism can’t define me. I define autism.” Now as an adult, more than ever, I want to define how to be a better partner for the people I care for.

Kerry’s new book “Autism and Falling in Love,” tells the story of how he was nonverbal as a child and overcome the odds to become a national speaker and find a relationship as an adult. You can learn more about Kerry and his book here.

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