daughter with her hand leaning against her face

I want to tell a story about a week whose hours passed anxiously and left me feeling as though I woke up somewhere I had not intended to be.

It began with a couple of statistics I came across a year ago.

A 2012 survey showed that 63 percent of the participating kids with autism spectrum disorder were bullied. One study found that kids with autism are 28 times more likely to attempt suicide.

I wish I could unlearn this. It doesn’t loom, not exactly. It is more like a dark cat that saunters through our weaker moments. A pause, a glance, a reminder. It takes my breath away. But a pause is just that and life resumes its normal speed, and the creature wanders away…

I don’t think about these numbers more than I should, more than any parent in our situation would. I don’t think about them at all when it is bright and sunny and we’ve had a great week at school. But the weather turned cold and dull last Sunday and I knew they would come creeping through. Feelings of distance and uncertainty followed me around the rooms of our house where we were stranded inside, looking out the windows, waiting.

I tried to find my way out with friends, but the air was stifled, I couldn’t connect. It is hard for me to keep up with conversations about home décor and crock pot recipes, when my mind is suspended elsewhere: Who do I need to speak to next, are we out of intake? Has our case manager been assigned? What is the next step, what’s working, what’s not working, the ABA bill was how much this month? I am a rodent on a wheel, spinning in circles, desperate for answers. I know I need this, camaraderie outside the world of special needs. And I remember being there, lost in a Color Book. Can’t I go back? Paint is important. I believe that. Don’t I?

It rained all the way home.

Tuesday was our parent support meeting. The woman that leads the group is the mother of a kind and beautiful 9-year-old girl. This has been a big month for them: Georgia legislators pushed through the bill, named for her daughter, which will require insurance companies in the state to cover autism therapy interventions for preschool age children. They have improved the lives and the futures of no less than 32,000 families. That was last week. This week the same girl was bullied by some kids at her school. Because she has autism and an Instagram account. The sentence purrs and the week moves slowly.

Friday I went to the school to have lunch with my daughter and a nice-enough boy sat next to us and opened his lunchbox. He looked at me and said, “She has to ask the teacher to help her play with people at recess and if they don’t want to play with her she cries. She cries in music, too. She puts her hands over her ears and cries and cries and cries.” And then he turned back to his lunch and went on about his ham and cheese. And the numbers rose out of nowhere, circled my legs, told me to get her out of there, take her home to where it is safe and dry and there’s no one to tally up what behaviors are inadequate, unacceptable.

I should have told him about last year, how much better we are now, how much progress has been made. I should have explained that the music hurts her, like needles in her ears. She told me once it feels like it is squeezing her brain. I should have done sensitivity training with the classroom. Read them a book that explains what a sensory processing disorder is and how a perfectly lovely day can be ruined by escalators or polyester or people singing in unison. I should have bought her those headphones.

I am angry. With the boy and the cat and everything that is easier than this. I called my mother and got a pep talk. Everyone has unshared problems. It is all relative. Keep your chin up.

Saturday: Dog grooming day. The clippers hum brilliantly and the fur falls off in downy clouds. It’s the closest thing I have to a Zen garden. I was covered in hair when I finally stood up an hour later. Our toddler had been playing with the tufts, chasing them as they blew haplessly around on the porch, so I took him upstairs to shower with me. There we were, standing under the water, and he was laughing and laughing and laughing. And I could feel it: the week and the numbers and the words breaking apart into a collection of sounds and shapes that don’t mean anything without knowing what time will make of them. I see my son’s smiling face as he looks up toward the pressure and warmth of the shower. He is perfect, beautiful, happy.

I think: how well we are represented by the person we become when we quietly let go of superstition and the things that keep us separated and hold tightly to what is real and binding. We are more than pieces of life ambling through the weeks in a year; we are parts of a whole. And special needs are more than headphones and tears at recess, they are the landmarks of parenthood, of family, humanity. I pick my little boy up and hold him. The water is hot and wonderful. I could be melting.

I hear my daughters in the room next door, having a very neurotypical conversation about kittens and bracelets and bugs in the yard. The playground is miles away and autism is a small box filled with six letters and the memories we are learning from. I’m wrapping it up for you, our gift, our special needs. I don’t know what they will mean to you but I know they will be entirely relative.

It is important, all of it. Colors worth sharing.

Follow this journey on Betty Sweet Writes.

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After completing our ritual of returning books and examining the library’s fish tank, my son and I headed to the children’s nook. A woman and a boy were already seated in the comfy armchairs, reading. Philip pulled out a car from one of the toy bins. He pushed the car across the cityscape carpet. He didn’t follow the streets, nor did he say “beep” or “vroom.” He hummed and vocalized using his own unique repertoire of sounds. Hearing him engrossed in play, I turned to browse the board books.

“Use your words,” said the other mom. I flinched and glanced over. The woman was pointing to a frog in the picture book her son was holding. She touched the corresponding word. The boy was smaller than my 4-year-old, but appeared close in age. I suddenly felt… anxious? Annoyed? Jealous? Judged?

She probably thinks I should be doing the same with my son.

My son’s noisy play attracted the other boy’s attention. He leaned forward to watch Philip as his mother read until, no longer able to resist, he hopped out of the chair, picked out a car, and tried to play with Philip. Philip remained focused on the car.

The mom patted the chair, and the boy returned to his seat and book. A few moments later, the mother repeated the phrase, “Use your words.” I noticed that she paired a signal with the phrase: her index and middle fingers closed on her thumb, imitating a mouth.

Meanwhile, Philip’s vocalizing was becoming louder as he happily found a different toy to roll across the floor. The little boy got out of his seat once more, came over to Philip, and gestured in has face just as his mom had. “Oose or ords,” he ordered Philip.

Use your words.

I didn’t know whether to laugh or cry. Bless his heart, that little boy understood what his mom wanted and recognized that Philip wasn’t doing it. The mother looked at me, then smiled at her son and said, “Yes, use your words.”

I was tempted to bolt before I burst into tears, but I worried that yanking Philip away would cause a meltdown. Just then the other boy spotted a Curious George hand puppet on the floor. He picked it up and took it to his mom.

“Let’s find a book to go with the puppet,” she said.

As the mother of that monkey’s number one fan and an incurable busybody, I knew exactly where to look.

“Here you go.” I handed her one of Philip’s favorites.

“Thanks. I haven’t been to the library in years,” she said.

“We’re here almost every Saturday,” I explained.

“Does he go to school?” she asked, nodding to Philip.

I named the preschool, an integrated program for both typically developing children and children with disabilities like my non-verbal autistic son.

We discovered that her son is in a class just across the hall. I felt a pang of jealousy. Her son was in a full day classroom. Why didn’t I insist on full-day? I admonished myself. Maybe Philip would be “using his words” by now. 

I stifled my envy and guilt to ask, “Are you going to the PTO event next Saturday night?”

“I saw the signs, but I don’t know what it is,” she said.

I told her what I knew, including the time. I could see her hesitating.

“Well . . ” she began and then explained: she and her son were homeless. They were being sheltered in a network of local churches. The timing of the PTO event conflicted with the scheduled meal time.

“My son’s not developmentally delayed, I  just didn’t provide him with the environment he needed,” she confessed. She also confided that, in addition to being homeless, she is disabled. Suddenly, I realized that “Use your words” wasn’t a dig at me. It wasn’t about me at all.

I was no longer indignant or jealous. Here was a child that really needed to be in preschool all day, every day, not just for instruction, but for breakfast and lunch. Here was a mother, having been told the importance of reading to her child, had brought her son to the library. Here was a mother doing the best she could for her child under very trying circumstances. Here was a mother who opened up to another mom she thought would understand her and who, it turned out, needed to be understood, too.

Without using his words, Philip let me know he was ready to go.

“Maybe we’ll see you next Saturday,” I said before we left.

“Maybe. Thanks for your help,” she said.

No, thank you, I thought, but I didn’t use my words.

This post originally appeared on That Cynking Feeling.

The Mighty is asking the following: Can you describe the moment someone changed the way you think about a disability or disease? 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.

One of the common early clues of autism is speech delay. That was the case for my son, and we’ve come to appreciate both — the spoken word and the ability to communicate in other ways.

Contrary to what doctors told us, we never bought into the notion that Darrin Khan would never be able to speak. Still, we taught him sign language until he developed the verbal skills to communicate with us. Signing empowered him then, and he still uses it on occasion today. Though he’s far from conversational, Darrin has come a long way verbally. The communication challenge now is when he’s at or nearing a meltdown.

Meltdowns are rarely about the moment. In our case, they’re typically rooted in being tired, over-stimulated, hungry, in pain or combinations of those four. It’s during those times when we have to rely on unspoken words because he simply won’t tell us. The most challenging situations are when we don’t know either the underlying issue or the issue of the moment.

He is a sweet boy, and we’ve been fortunate that he’s never been prone to violence like some kids, but lately he’s started hurting himself when he’s frustrated. It’s hard to explain the feeling of helplessness while your child is banging his head on the ground or hitting himself repeatedly on the side of his face. Any effort to stop him only escalates the situation.

We learned early on that our parental instincts and
experience weren’t always effective with him. It’s during meltdowns when tensions peak that we are reminded of this cruel fact. I wish I could say we’ve always been able to resist the urge to yell at him or physically restrain him when he’s melting down and hurting himself. It’s one thing to know that calmly and silently waiting it out is the only real solution, but quite another to actually do it.

Last week was pretty tough. He was unusually prone to meltdowns and we weren’t sure why. We eventually figured out that he had a sinus infection without the usual symptoms. During that week he communicated in a new way, which was a major achievement. He was on the verge of a meltdown at bedtime and we were trying to figure out the problem.

Fighting back the tears he simply said, “Draw.” He loves to draw, so we took it to mean that he wasn’t ready for bed. It seemed like a reasonable compromise given the week he was having, so I let him draw. He immediately drew a picture of a different bed in the house. Then I remembered that he told me earlier in the evening that he wanted to sleep in that bed. He was certainly capable of verbalizing this, but that’s not how it works when he reaches this stage. I asked him if he wanted to sleep in that bed. With relief in his teary eyes, he simply said, “Yes.”

We could have easily missed that clue. He’s got hundreds of pictures around the house and we’ve never viewed them as a form of communication. If we can get him to use drawing as a communication tool when he gets to this stage, we will have reached quite a breakthrough.

My own communication challenges are rather legendary and people often wonder what I’m thinking. I prefer to focus on the best of Darrin Khan when I write about him. I don’t want people to pity him and I want to share the amazing parts of him that most people don’t see. If I’m being honest about autism awareness, I have to include the full picture of kids like DK, which includes extremes in both directions.

I don’t want him defined by his weaknesses, his meltdowns or his autism, but they are part of the total package. It’s a package that includes stress we feel in public when he’s on the edge of losing control; the panic I see in my wife’s eyes while he’s hurting himself; the pain and despair I see in those eyes long after he’s back to his joyful self; the guilt I feel for being embarrassed during his more public meltdowns; the power of the word ‘retard’ to remind us how society views him; the looks of disapproval from people who might know, but don’t care; and the acceptance that, in spite of the support we get in this fight, we need to be prepared to fight alone.

The package also includes the questions my wife and I ask ourselves all too often. Why is he upset? Are we doing enough for him? Will his sisters eventually resent him? Are we hurting him by not putting him on ADHD drugs? What will middle school bring? High school? What happens when he transitions to adulthood? And the question that rarely gets spoken, but is never far from our minds: what will happen to him when we die?

I was talking to a new colleague a couple days ago and he was asking me about my research interests and my son. I’ve had many conversations like that, but he surprised me with a simple question. “Do you worry about him?” I guess I assumed that went without saying. At that moment I realized that no thoughts occupied more of my time than worrying about my son. My answer was a simple as his question. “Yes.”

There are many things we can’t control, but we can control where we direct that worry. We choose to look forward and enjoy all that this life affords us. We spend a great deal of time thinking about maximizing his potential and very little thinking about how he got or why he has this disorder. We could worry about the next meltdown, but it’s so much more rewarding to look forward to the next picture he draws or the tickling he loves and expects at bedtime or his newest dance or the way his smile and hug at the end of a tough day can make you forget all about it.

We do worry about his place in the world, but we are comforted by his place in our home and the constant love, pride and acceptance he receives from his sisters. True, there are moments when we mourn the loss of the life we imagined for him, but many more moments enjoying the life he actually has.

That’s the full package. We are a family of extremes with many more good days than bad. We are happy, scared, grateful and stressed, and an uncertain future allows us to appreciate today. We make sure we have more smiles than frowns and more laughs than tears. Darrin Khan’s spirit and creativity have taught us more about love and priorities than we ever imagined and we are a much better family because of him. No words necessary for that lesson.

I was recently reminded of a quote by the late, great Jim Valvano. “If you laugh, you think, and you cry, that’s a full day. That’s a heck of a day. You do that seven days a week, you’re going to have something special.” Darrin Khan has given us a lot of full days.

The post originally appeared on LinkedIn Pulse.

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There is this student at my school who is a part of the West Lakes Special Education Program. He’s a wonderful boy, and one of my closest friends. When you see him, you see kindness, love, compassion and creativity. You do not see his Autism.

students with special needs smiling

But, apparently, some kids at my school don’t see Robbie the way I do – the way everyone should.

One morning, just recently, I was walking to my first period class and there was a group of senior boys in front of me, presumably on their way to their first period as well. Robbie was down the hall behind all of us, walking to help take things to the office, when he started speaking.

His voice is loud, but not obnoxious. He’s a tall boy, but he’s not fearfully large. He’s a fantastically smart boy, and I don’t understand why people say the things they do…

Robbie was walking down the hall, saying, “I want my mommy to put a sticker in my book, not my grandma.” Then I heard something I will hardly soon forget. A student in front of me tried to be funny and imitated Robbie in a snarky voice. The friends that surrounded this guy started chuckling and smirking while making more rude comments.

This broke my heart.

Do these kids know that the words they speak can still be heard? Do they know that he hears and feels the emotions of what they say? It hurts me to know that people can be so ignorant. Just because they are not just like Robbie does not mean that Robbie is a bad kid, or deserves to be treated the way they treated him.

I’m younger than the senior boys in front of me, but I know that what they did was wrong, and they need to know that too. I wanted to speak up. I wanted to so bad, but every time I tried to move my lips, nothing but silence came out.

Finally, I piped up. “Do you know who you just made fun of? Do you find it funny? It’s not. I suggest that unless you’d like others doing that to you if you were different, that you don’t do it again.”

I was red with anger as I walked the rest of the way to my first period. I sat down at the desk, and I buried my face in my sweatshirt so nobody would see my tears of anger.

I knew that even if Robbie heard the comments, it would not have lowered his spirits. He’s so cheerful. He brings the biggest smile to my face when he comes into my classes to visit, or when I see him walking so proudly through the halls to his locker.

He truly has been able to put a smile on my face every day since I have known him. And that’s something that is amazing, as not many people can do it.

puzzle piece graph with text 'accept, understand, and love autism'

So, to the kid who had the audacity to pick on Robbie, think again and think hard. Do not do something so childish and rude again to my friend Robbie.

I think we can all learn from the ignorant boy in my school commons. The lesson is don’t speak without thinking, and don’t judge without knowing. Everyone is fighting their own battles, they don’t need you to fight their fire with your own.

Keep your rude comments to yourself, or better yet, don’t say them at all.

The Mighty is asking the following: Can you describe the moment someone changed the way you think about a disability or disease? 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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Having a twin brother with autism has inspired me to study Family and Child Sciences at Florida State University and pursue a career in Disability Services/Education. I am specifically interested in a focus on the individual’s life after high school and how he or she can experience successful and positive outcomes.

Over recent years, I have watched my parents discover new options for my brother that they wish they had known about in the past. Having a child with a disability doesn’t come with an instruction manual, so I am writing this letter to parents in hopes that they will be able to relate and understand that there are opportunities available for their children.

To the Concerned Parent of a Child with a Disability:

Having a child with a disability can provoke so many thoughts and questions. Having fear or worry about who your child’s therapist or pediatrician will be, all the way to what your child’s living arrangements will be years down the road, are definitely some of the common concerns among parents. There is never any way of knowing what the future holds for your child, but there are a few smart ways to be prepared.

1. Put away whatever cash you can for a “rainy day.”

Even if it’s only five or 10 dollars a week, that savings will go a long way. For example, your child may need a change in medication or a new wheelchair as he or she gets older. Your child might be interested in college after high school. Changes can be very costly, so it’s important to keep all of the possibilities in mind.

2. Join support groups and attend disability-related conferences and workshops.

Hearing the experiences of other families and discovering resources that you didn’t know were out there can change your child’s life. For example, there are unique classroom learning options in public and private schools that can benefit your child’s education (such as the McKay Scholarship Program and Individual Education Plans).

Being knowledgable about your child’s disability and learning how to manage it in the best way possible is not only in the best interest of your child, but of your entire family as well.

3. Physically map out the future (think diagrams and lists).

Even if your child is an infant, it’s never too early! Draw out a diagram or make a list if you have to. Think about the goals that you’d like to reach together and at what point you’d like to tackle them. If you have a daughter, for example, consider how you will help with her menstruation cycle when she becomes a pre-teen. Take note of the traits that you’d like your child’s future trustworthy respite care worker to have. Research employment options for after your son or daughter graduates.

4. Plan for future care.

Does your child have a sibling or other family member that can step up and take the responsibility of caring for him or her a long way down the road? Is the group home a viable option for your child’s future housing situation?

If all of these decisions seem overwhelming to you, always remember that you are not alone. Your child is beautiful in every way and appreciates your every move. Even if your child has a difficult way of showing it, he or she is so fortunate to have such a loving parent like yourself. I am currently the legal back-up guardian to my twin brother with autism and all of these factors are constantly on my mind.

My parents have gone above and beyond to make sure that my brother, Dan, has received the proper services and been given opportunities for success, equally to his typical peers. He is now a caricature artist at fundraiser events and conferences. Just remember that it’s never too early to get a head start for future plans.

The Mighty is asking the following: Can you describe the moment someone changed the way you think about a disability or disease? 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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If you have a child with autism, then you know that there are good days and bad days. You have days where autism takes a back seat and days where autism is not only sitting up front with you, it’s in the driver’s seat.

Last week was one of those autism-is-in-the-driver-seat kind of weeks, so I lashed out a bit. I gave you all a list of the sometimes insensitive, rude and ignorant comments said to me as a mother of an autistic child advising you on what not to say to mother of a child with autism. I won’t apologize for my words because, well, last week I needed to say them and it felt good… really good.

But now I realize that it wasn’t fair to tell everyone what not to say to a parent of a child with autism, if I don’t give some advice on what to say.

Just like every child is affected differently by an autism diagnosis, each parent is also affected differently. A comment that I believe is kind and encouraging, another parent may see as rude and condescending. Needless to say, I can’t give you an exhaustive list since every situation is different, however, I have come up with a few things people have said to me over the years that clearly left a mark and not a scar. So, this is a list of things to say to a parent loving a child with autism that made me smile and want to hug them rather than hit them or scratch their eyes out.

The one thing to remember, regardless of the child or the parent, is to always be accepting, be aware and be kind.

1. “Wow! I can’t believe how far he has come!”

Even if the distance from where he was to where he is seems miniscule to you, chances are it is a huge, expansive distance to my son and me. Commenting on progress is a beautiful thing to say, but only if you really see progress or change. We mothers are like dogs; we can smell your fear in an off-handed, don’t-know-what-else-to-say remark. So if you do believe it, then say it. And be prepared to be hugged.

2. “He is so good at… [insert anything here].”

Whether it’s a perfect Jim Carrey imitation, how long he can sit watching the same episode of “Thomas the Tank Engine” and recite every word perfectly, or his ability to memorize all the details of every earthquake in California’s history, point it out. Point out the positives. See the positives. We see it. We know it. We love when you do, too.

3. “My friend’s, sister’s, cousin’s, great aunt twice removed’s son has autism and he is in college now.”

Yeah, we know that your friend’s, sister’s, cousin’s, great aunt twice removed’s son is not our child, and we know that autism is a spectrum of strengths and struggles, but, hearing success, hearing good news and having you share that in a kind, accepting and compassionate way, makes us love you, even if we don’t know you. I hope you like hugging strangers, because this may get you an even bigger hug than #1.

Boy sitting on the grass next to big orange pumpkins
Kathy’s son sitting on the grass next to pumpkins

4. “Is there anything I can do to help?”

Asking this question in the middle of aisle six in the busy, loud grocery store where our child is currently having a huge sensory meltdown as we try to calm him down and discreetly scooch the glass shards from the spaghetti jar that just missed your head under our cart, rather than staring at what you believe may be an “undisciplined child” having a temper tantrum, may possibly make you the hero in a blog story that goes viral on social media three hours after you get home from the grocery store.

We know people are staring. We know people are judging. We know people don’t get it. That’s why those eight simple words from just one person are beautiful. Oh, and sorry about the spaghetti sauce on your new shoes.

5. “He feels so much, doesn’t he?”

This is a kind, compassionate and understanding way to say that when you see our child crying easily, melting down regularly, and being terribly inflexible, you are letting us know that you recognize that there may be more than meets the eye and that our child is not bad, and neither are we.

6. “He is fascinating.”

Not weird, not odd, not quirky. The way his mind works is fascinating and often has me in awe and wonder. I love knowing that you see his mind as extraordinary and not as something that is broken and needs to be “fixed.”

7. “He really loves you.”

Yes he does. There is such a misconception that children with autism don’t feel love, that their emotions are too bogged down to “feel,” but, believe me, they feel love, they know love, they give love. And on days when it’s hard, on days where we have lost our patience, raised our voice and dried countless tears, we don’t feel very lovable, so it’s great when others see and feel that love, too. We know that our child loves us like no other and although that love may look “different,” it is never to be trivialized or minimized.

Boy wearing Luigi costume on steps of house in front of a pumpkin pail
Kathy’s son wearing a Luigi costume

8. “I wonder what he is thinking?”

O.M.G. If you only know how many times a day I have wondered the very same thing. “If only I could get inside his head,” “If I only knew what he was feeling,” “If only he would let me in” has crossed every parent’s mind countless times. Knowing that you take the time to wonder, too, well, you have just gone up higher in rank on the Favorites list on my iPhone.

9. “What is autism and why do they call it a spectrum?”

Yes, maybe we are tired of talking about autism, maybe we want people to see past autism and just see our child, but, we will never turn down an opportunity to educate someone about our child and debunk the “He doesn’t act like ‘Rain Man’” myth. So please, ask away.

10. “He has taught me so much!”

These kids see the world differently and if you take the time to get to know them, really get to know them, you will open your mind and your heart to their world and you will be better for it.

11. “I brought wine.”

Even though you might not fully understand what loving a child with autism is like, the fact that you are here, on our doorstep, holding a bottle of wine and trying to understand, well, there are no words to express our gratitude. We love that you feel like we are in this together, so grab two glasses while I get the bottle opener.

12. “I have Velveeta Shells and Cheese (or whatever the one and only type of food is that child will eat).”

You win. Game over.

When trying to decide what you should say, keep in mind that these children and adults with autism may have severe language deficits and they may not be able to say a word, but that does not mean they aren’t communicating with you. Take their lead. Maybe no words are necessary. Maybe you don’t have to say anything. Maybe it’s just a kind smile, a door held, making eye contact with us or a kind “hello” to our child.

However, if we initiate the conversation, if we say the words, “My son has autism,” just give us a knowing look, a kind smile and ask, “How is he doing?” We may say “fine” or we may break into a 10-minute long discussion about how far he has come and how far we know he will go. Whichever it is, trust me when I say, we will always remember that you asked.

A longer version of this post originally appeared on The AWEnesty of Autism.

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