Why I Wave Goodbye to My Daughters With Autism Each Time They Leave for School

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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.

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Everyone on the Bus Thought My Son With Autism Was Being Rude. Then, He Did This.

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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.

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A Little Girl Asked Why My Daughter With Autism Is Weird. Her Friend Had the Best Response.

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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.

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Autism and Falling in Love: Why I Dedicated My Book to the One That Got Away

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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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A Message From a Special Needs Mom to All Other Moms

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There’s a disturbing trend happening among a handful of parents who are raising children with special needs, developmental delays, medical needs, trauma, etc. — the lashing out on those raising children without these extra labels.

I’ve read words from obviously hurting mothers that express hatred toward any mother of a typically developing child who dares to share the joys of parenting… or worse, who dares to complain about how hard being a mom can be.

I get it. I really do. It’s hard work being the mom of children with special needs. Some days go just fine, but other days I long for normal. It can be frustrating to hear a mom complain that she can’t get her picky son to eat his broccoli when I worked for months, literally, to get my son to eat anything other than oatmeal. It can sting for a moment when a friend shares a funny story her child told her or something sweet he may have come running to tell her, when I’m longing to hear what my son thinks and feels… longing for even just one small sentence.

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But, those are my issues to work out in my own heart. Just because things can be hard in my home doesn’t negate the struggles my friends go through. Special needs or not, parenting is hard work. Just because my hard is different from your hard doesn’t give me the right to silence you or belittle your experience. No, you may not know what I go through on a daily basis. It may be difficult to imagine some of our emotions and struggles… but that’s not your fault. It’s not a fault at all.

So please, please keep bragging about your children. If I can’t find joy in your joy, then I’m not being a true friend. To feel anger because something good happened to you that hasn’t happened to me is immature at best, but really it’s a complete lack of love.

We need to love and support one another, not just those who walk a similar path to our own. If you’re tired and frustrated because your little one has a cold and has been extra cranky, it’s OK to share that and ask for support. Don’t feel awkward about saying that to me, knowing that we’re in post-surgery recovery mode and having a rough go of it. I mean that. If I’m a friend, if I’m being a loving and supportive person, then it won’t make me roll my eyes and utter, “If she only knew how bad it could be…

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We can’t measure the level of celebrating or grieving that our peers experience, compare it to our own level and make a judgement call on whether or not the celebrating or grieving is acceptable and/or equal to our own. We simply need to enter into their world, grab every ounce of compassion and empathy that we can muster and be a friend.

Our job, as parents of children with special needs, is not to make others feel guilty and constantly remind them how good they have it. Our job is to love our children (and yours!), support and advocate for them and to be a good friend. Your job, as parents of typically developing children, is not to hide your struggles and joys. Your job is to love your children (and ours!), support and advocate for them and to be a good friend.

We who may feel like we may have a steeper path to climb in this parenting journey shouldn’t just shut our mouths, grit our teeth and make the journey alone. No, it’s good to share the heartaches and struggles… but we must do simply that and not tear down or silence others in the process.

Can we all just agree that, at times, motherhood is hard for everyone? And truth be told, I don’t think for one second my friends of typically developing children have it better or easier than I do. Because I have the two most beautiful and amazing children on the planet. I have more than enough to celebrate!

This post originally appeared on LaurenCasper.com.

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When I Slowed Down and Actually Listened to My Brother With Autism

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So many people are in such a hurry.

It’s great once in a while. Rushing and effectively getting tons of stuff done in a day or two feels exhilarating and fantastic. But I think it’s unhealthy as a lifestyle choice, for most people.

I’m not a rushed kind of gal. I don’t put a lot on my plate and rarely take on projects with deadlines or excessive multitasking warning labels. But even I am often guilty of being in a hurry.

I like fast conversation. I like layers and quick wit and surprising revelations. I crave personal epiphanies and different ideas stumbling all over each other until they connect like some fabulous crazy integrated puzzle.

Often my brother will want desperately to chime in. He, too, finds fun in sharing perspectives, adding layers to thought and encouraging laughter with his cheeky satire. However, at 32 he’s a slow talker and extremely difficult to understand.

He’s also used to people assuming his sounds are just sounds and not slowing down to hear the word or even believe in it. For years and years it was only my mom who truly believed in his language. So he has a habit of giving up easily, and some of us have a habit of letting him.

Now that he’s getting slightly clearer there are many family members and friends — and of course his girlfriend — who believe, but still it’s only Mom (and maybe his girlfriend) who is always willing to slow down and listen — regardless of the to-do list, the ticking of the clock or the quickness of the conversation.

Every time I catch myself feeling impatient with my brother’s slowness, I have to laugh. What am I in such a hurry for? The next epiphany? I already know my brother has some of the most interesting and surprising insights of all. Why not slow down and wait for it? And his humor is brilliant! If it’s a laugh he’s offering, it’ll be worth the wait.

Hearing my brother’s words is always worth the wait. Letting him know we want to hear is always worth the wait. Taking time to allow him to hone his skill rather than make him feel inadequate is forever worth the wait. 

This is what I’m so passionate about sharing — the answers autism has offered me. In another home, a place where everything is easier, it’s also easier to ignore important truths and take the easy way. But later, the easy way has almost always given us bad habits like blaming, rushing to success, a willingness to give up easily. Challenges and difference highlight the important stuff. We don’t all choose to learn it or see it, but often we do. Because it offers itself to us and because not much is easy anyway, so we’re more willing to take the time.

I’m betting you have a loved one who you rush. Whether it’s yourself, your child, your sibling, your spouse… maybe you’re rushing language, skills, getting out the door on time. Don’t beat yourself up over it, but do go ahead and slow down.

It’s important to have goals and to go after them with intention and focus. But it’s also smart to take your time, to notice and connect with the world along the way. Otherwise you’ll reach your goal, but you’ll get there empty handed.

All the important stuff — all the people and lessons and beauty you need to enjoy and use your goal to its fullest — happens along the way.

So slow down. Our loved ones are talking.

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This post originally appeared on Autism Answers With Tsara Shelton.

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