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To My Son With Autism Upon Starting Kindergarten

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Dear Son,

I guess I must have blinked, because here you are, a vibrant 5-year-old with big ideas and bigger dreams. In just a month, we will walk down the street with your backpack to enter the bustling hallways and classrooms of your new elementary school for your first day as a Kindergartner. You have thrived in your loving and intimate pre-school class, growing and learning with the same dozen children over the past three years. You say you are “so ready” for school, and I know you are. I also know you are likely to learn much more this year than you can imagine about yourself, about other kids, and about navigating an environment designed for neuro-typical children.

You might learn most other children don’t need to cover their ears to protect against the rebounding cacophony of sounds off the cinder block walls, or scoot over to the very edge of the cafeteria bench to avoid the wafting, pungent scent of a friend’s hot lunch.

You might learn most other children don’t routinely count by 13s or quote hilarious lines from favorite books and movies at the mere mention of a key word or phrase.

 

You might learn most children don’t jump up and down with exuberance at the sight of a rainbow, or stomp over and over in tight circles when they lose a competitive game.

You might learn these general truths as you acclimate to your new school. But how will you learn them? And what will you deduce about this wider, louder world in which you stand out for your differences? These are not lessons I can teach you. These are lessons to encounter in your own time. Some lessons will yield new opportunities. Some will hurt keenly.

My promise to you is I will greet you with firm hugs at the end of each day, and listen expansively to what you do and say about your experiences. I will advocate with empathy and vigor when you need me, and trust your growing capacity when you don’t.

Close-up of boy smiling

For the biggest truth of all is this: You are mighty, and worthy and loved for exactly who you are. For every lesson you learn, there is another one only you can teach. I know you are “so ready” for school. I hope school is just as ready for you.

Love,
Mama

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4 Things I Want My Sons' Special Education Teacher to Know

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A new school year is upon us! My twins, who turn 4 next month, are starting their third year of special education preschool. It’s a half-day program at the local public school. They absolutely love it! They get to ride the big yellow school bus, eat a snack and even do yoga with the physical therapist.

One of my boys, Julian, is completely nonverbal with an autism diagnosis. He is the sweetest, cutest kid ever. The other one, Dominic, is undiagnosed, with a severe language delay. He is also the sweetest, cutest kid ever.

I know most parents worry when they send their kids off to school. When my oldest son started kindergarten seven years ago, I mostly worried about his behavior. He is “all boy.” I worried about what color he would get in his folder every day. Could he adjust to sitting still for a longer period of time? How would he do making new friends?

Now that I have children with disabilities, my concerns have drastically changed. I no longer worry about my own children’s behaviors. I now find myself worrying about the teachers’ behaviors. I know that might sound negative, but let me explain — imagine sending your child to school with duct tape on his mouth. Seriously, take a second to imagine that. My children can’t voice their questions, worries, frustrations or fears. And to top it off, they can’t tell me about their day when they get home. It’s scary.

Their teachers and therapists are in complete control. I worry how they will handle their own frustrations throughout the day. It’s not that I don’t trust them, because I do. My boys have an amazing team working with them. I just know how hard their jobs are… and I know how irritated I can get on a daily basis.

Even though my boys are at different levels and have their own specific needs, my message to their teachers is the same.

 

Here are a few things I want them to know:

1. I appreciate you.

In the midst of meetings, conferences and classroom parties, there will be times when I forget to say this. But it’s true. If I could buy you a drink every day (alcoholic or caffeinated), I would. You have one of the most important jobs in the world. Thank you!

I also know you don’t live at school. I know teaching is your profession and you have a life outside of work. I realize you get sick, your family gets sick and life happens. You have a demanding job. I couldn’t care less about your lesson plans being typed up and your newsletter coming home on time. So relax… I’m in your corner.

2. I’m counting on you.

I’m entrusting you with two of my children. Neither one of them can tell me what happened at school that day. Imagine how scary that is for me. You’re not only their teacher, you’re their “mother” when I’m not around. I want you to treat them as if they were your own.

3. I’m not Super Mom.

I try my best. But I’m stretched thin. During the first week of school, my boys will have on fresh clothes and shoes. They’ll have cute little snacks and their hair will be brushed.But there will also be mornings when we miss the bus because their insomnia kept them (and me) awake at night. I may even forget to put a snack in their bags one morning because my other two kids wouldn’t get out of the bed (because teenagers).

Please be patient with me and don’t take it out on my boys. It’s not their fault when I can’t handle life. Remember, I’m counting on you.

4. Their emotional health is more important than their IEP goals.

My family has worked very hard to make sure my boys feel safe and loved in a world they often don’t understand. That sense of security can be ripped away in an instant if they’re pushed too far. Of course I want my children to master new skills and make developmental gains. But that won’t happen if they don’t feel safe… if they no longer like school.

There will be days when they just can’t “get it together.” But remember, they’re not being bad. They’re simply frustrated. So when that happens — and it will —  call me! I may have ideas that could help get them back on track. Or I may even decide to pick them up. We are in this together — we’re a team.

My children are my world and I’m doing everything I can to help them progress. Sending them to school is a huge part of those efforts. As a parent, I’m counting on you to protect, encourage and guide them. I’m looking forward to the year just as much as you are. So, thanks in advance!

Follow this Journey at Not an Autism Mom

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U.K. Stores to Hold Nationwide Quiet Hour for Those on the Autism Spectrum

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On Monday, October 2, shops across the U.K. will observe a nationwide quiet hour as part of an autism awareness initiative benefitting shoppers on the autism spectrum.

In partnership with The National Autistic Society (NAS), on that day all 14 of intu Shopping Centres will reduce their lights, music and background noise starting at 10 a.m. Also participating are Clarks and Toys ‘R’ Us stores throughout the country, both of which, have previously hosted quiet hours for shoppers on the spectrum.

While the event starts on October 2, stores throughout the U.K. are encouraged to participate at any point during the week.

According to research from The National Autistic Society, 64 percent of autistic people avoid going shopping, and 28 percent have been asked to leave a public place for reasons related to their autism.

“Like anyone, autistic people and their families want the opportunity to go to the shops and services on the high street. But our research suggests that many find the often busy, loud and unpredictable environment of public places overwhelming and avoid them altogether,” said Mark Lever, chief executive of the National Autistic Society, adding:

“We hope that the hour will provide a break for families in the week and in the long term will help spread understanding so that shops and services are more accessible every day of the year.”

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My Son's Autism Is an Invisible Disability

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My son’s autism is invisible. When I first expressed my concern that Henry was two and had only spoken two words and had stopped saying them months ago, our pediatrician told me Henry looked just fine to him. Yes. A pediatrician. While it’s frightening that a medical professional, one I love and respect, could not see past the invisibility of my son’s disability, I can’t fully blame him. This is human nature. For many of us, seeing means believing. And not seeing, not knowing, terrifies us. We can find the worst parts of ourselves when we are faced with the unknown. I am guilty of the same well-intentioned, yet harmful misconceptions.

Before my son was diagnosed, when I first moved into my current home, there was a man who walked by my house, a lot. Back and forth, he walked past my house. My instinct was to lock my doors. Weeks passed and I began to see the man walking everywhere, all around town. I remained cautious. A few months later, Henry received his diagnosis, and I began to learn all about autism spectrum disorder.

 

One day, as I drove down my street and passed the man pacing my block, it dawned on me. Maybe he is autistic. Maybe his repetitive behavior that soothes him is walking. What if one day Henry finds comfort in long walks? What if someone sees him, misunderstands his behaviors and judges him? What if they are afraid of him? I began to look on this man with compassion; I began to look upon him with the same kindness that I can only pray that others will bestow upon my son. I haven’t seen the scary man surveying my neighborhood in a long time. However, I do see a man who is minding his own business, and enjoys long walks around my neighborhood, quite often.

Autism can be invisible. This fact is a double edged sword. It will help my son in life, and it will hurt him at times. The fact that one cannot see his autism spectrum disorder, will at least impact how people will judge him. It will also leave him vulnerable to misunderstanding and unsolicited judgements. So much of how we deal with situations and people is based on our perceptions. Sometimes our perceptions are born from experience, knowledge and our personal ideologies. But sometimes they are born from fear, misunderstanding and ignorance.

How do we reconcile these conflicting motivations from our perceptions? We can begin ceasing our efforts to identify the disability. Education is wonderful, and I’m all for it. We should all educate ourselves about disability. But even a thorough education can be insufficient in identifying certain invisible disabilities. You could not possibly identify every disabled individual’s personal symptoms, traits, idiosyncrasies, self-regulating and repetitive behaviors. Autism spectrum disorder can be a great example. It is an umbrella diagnosis, meaning it encompasses a wide range of symptoms, and each individual’s coping mechanisms for these different symptoms is unique. In other words, it’s a mixed bag. And they don’t say, ” if you know one person with autism, you know one person with autism,” for no reason.

So if we cannot possibly learn how to identify each individual’s invisible disability through self-education, then what can we possibly do? Instead of looking for the disability in others, look for the humanity you share. When you see someone who looks different than you, or even someone who looks the same as you, and you don’t understand them and your instinct is to runaway, or stare, or judge, try not to. It’s that simple.

Instead of looking for someone’s disabilities, look within yourself for what we all share. Compassion, kindness, acceptance — they are all at your at your disposal. There is something even more fundamental than education in life: humanity. Sight can be one of our least reliable senses. Our hearts, however, are fully equipped to see what our eyes cannot. Close your eyes, open your heart, and you will see more than an invisible disability — you will see people, beautiful people.

Follow this journey at Diaper Diaries

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People in Autism Community Review 'Atypical,' Netflix's Original Series About Autism

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This summer, Netflix is launching a new original series about a teenager on the autism spectrum. “Atypical” follows Sam Gardner (Keir Gilchrist), a high school senior on the autism spectrum, and his family as he navigates dating, school and being a teenager.

Ahead of the show’s launch, we asked three people from the autism community — Lamar Hardwick and Erin Clemens, who are on the autism spectrum, and Jodi Murphy, a mother of a child on the spectrum — to review the first episode of “Atypical.” Here are their thoughts.

The Mighty: What does ‘Atypical’ get right about autism?

Jodi Murphy: You can tell that the writer, Robia Rashid, did her research or has a close relationship with someone on the autism spectrum. She writes from a neurodiverse perspective even though most everyone is Sam’s world doesn’t seem to accept that neurodiversity is a good thing. For me, that’s what’s most interesting about the plot as opposed to Sam’s autistic characteristics. I think it realistically shows the tension that comes from living in a world that doesn’t understand or fully accept you.

Erin Clemens: In my opinion, what “Atypical” got right is the fact that, for many on the spectrum, there are sensory issues with touch and sounds, and change is difficult. It also got right the feelings of being at school and the issues I’ve had with the crowds, noises and smells. I think the stimming was right on point as well.

Lamar Hardwick: Overall, I think “Atypical” did a fairly decent job. Of course, my assessment is based on the first episode, but the concept of the show being driven by a first-person account pushes the show in the direction of being more authentic.

Let’s talk a bit about Sam. What did you think of Sam as an autistic character? 

Hardwick: I like that the show gave Sam space to self-reflect and demonstrate his self-awareness. He gets to work through his understanding of self, and the audience has the opportunity to understand how an autistic person views themselves and the world around them.

So often the stories told about autistic people are focused on the world’s view of them. It was nice to see the show focused on how Sam interprets the world around him.

Clemens: I liked how, even though Sam is on the autism spectrum, “Atypical’ shows him as a person with thoughts and feelings like everyone else. He still goes through things that typical teens go through, just in a different way. This is so important for people to remember!

However, I didn’t like how completely blunt Sam tends to be. While I know some people on the autism spectrum can be blunt (I have been myself at times), I also feel that at Sam’s age I was learning to stay quiet. I did this because I knew I shouldn’t say certain things, I just didn’t know what those things were.

I also feel that his character was too openly factual — a major stereotype of autism. He knows facts about things and shares them with everyone he meets. At Sam’s age, I feel like he would have been more aware of this, too.

Murphy: I like Sam and his passion… I won’t give away what that is, but it’s endearing. He’s a really good guy trying to figure life out like the rest of us! He’s going to make mistakes, but I appreciate that he keeps moving forward.

What about the actor who plays Sam, Kier Gilchrist. Any thoughts there? 

Hardwick: There were parts of the episode where I felt some autistic traits Gilchrist displayed were a bit too overstated. While the actor did a pretty good job overall, issues such as lack of eye contact and taking things literally started to feel like a caricature of autism. I’m not sure that an autistic person would always see themselves in that light.

Clemens: I thought Gilchrist was great, but… some of the stereotypes portrayed were frustrating. He got the stimming part down well, though. I loved how he fit that in, and it seemed to be at the correct times. I would be very interested to see how the actor would portray a meltdown or a more overwhelming situation that is too difficult to handle.

Murphy: Gilchrist does a great job at portraying Sam, one person with autism. But we need audiences to know that everyone with autism isn’t a carbon copy of Sam.

I am a bit disappointed that Sam isn’t played by an actor on the autism spectrum. There are many autistic individuals who are great actors and should be given the opportunity to audition and play such a role.

What about Sam’s family? What did you think of the Gardner family dynamic?

Clemens: The family dynamic was very interesting! I thought Sam’s sister was very nice and protective. The mom’s concern for Sam was completely accurate in my eyes, and I appreciate that the dad is like the rock in the family. I really liked the scene where Sam and his father were together. I think this [was one of] my favorite parts. The only aspect that might be missing is that some families tend to be in denial that there are any issues at all.

Murphy: I wasn’t fond of the family dynamic. I thought it was a bit cliché and it could have been so much more interesting if they were quirkier and happier. 

I had major issues with the mother, perhaps because she’s so different from me. I think she comes from a place of fear and I don’t think she fully accepts her son. She seems sad, somber and tired. Rather than worry he’s going to fail or not fit in, I’d be busy finding activities and groups where he feels comfortable and included. I really hope my first impression of her is wrong and I grow to like her after watching more episodes.

Hardwick: My one major concern about the episode and the series, in general, is that Sam and his family fit a stereotypical understanding that autism only impacts young white males and their families. With diagnostic disparities between white children and minority children still being a significant issue, this may unintentional reinforce an image of autism that is inaccurate.

Based on what you’ve seen so far, would you watch the rest of the series? 

Hardwick: Despite a few concerns, I did like the episode and would want to watch the entire series to see how, and if, the show works through some of those issues.

Murphy: I’m not emotionally hooked to these characters yet, and I can’t quite figure out why. I’m not drawn into their lives and don’t feel compelled to binge watch all the episodes. That said, I am excited that Netflix and the writer cared enough to look at life from Sam, the autistic protagonist’s point of view. That alone makes me want to continue to watch and see what happens.

Clemens: I would want to watch more episodes to see what else they might touch on that relates to the autism spectrum. While I don’t quite agree with every aspect of the autism spectrum that they portrayed, I really appreciate Netflix for trying to create more autism awareness. Plus, I’m definitely interested in seeing if things change for Sam or his family, or maybe see how they portray a meltdown.

You can watch all eight episodes of “Atypical” starting August 11 on Netflix. 

Erin Clemens is a 28-year-old woman on the autism spectrum. She is also the author of the book “I Have Asperger’s.”

Lamar Hardwick is a husband, father of three boys and a pastor of a church located in Lagrange, Georgia. Hardwick was diagnosed with autism spectrum disorder in 2014 at the age of 36. 

Jodi Murphy is a mom to a son on the autism spectrum and the founder of Geek Club Books, 501c3 focused on innovative, entertaining autism education. 

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6 Tips for a Successful Trip to the Beach With a Child on the Autism Spectrum

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Planning a trip to the beach sounds like a lot of fun. But it can be a bit stressful when you’re planning for your little one with autism. I live close to the beach and frequently take my 3-year-old twins; one of them was recently diagnosed with autism. I figured I would share a little bit of wisdom (insert laugh here) to those of you planning your beach vacation. Here are a few things to keep in mind.

1. Safety First.

If your child is an explorer (other wise known as a wanderer), take steps to ensure his safety. Call the local police station to let them know you are coming. Send them a picture of your little one. You could also contact the local Autism Society of America (ASA) chapter ahead of time to get the skinny on local policies and phone numbers.

There are also stickers and bracelets you can purchase with your contact information. If your child lets you, you could simply write the info on their leg with a permanent marker.

2. Location. Location. Location.

Consider taking your family to a calm beach without the big waves. This way, your family can enjoy the water without worrying about the rough surf. We live a mile from the ocean front, but we never go there. We visit the bay.

You may be thinking, “What’s the beach without the waves?” or, “I don’t think it will be fun enough.” My older kids love the calm water. Instead of surfing, they paddle and skim board. They can also take floats in the water and relax. You can’t do that with big waves.

 

3. Timing is Everything.

Holiday weekends seem like the perfect time for a beach trip, unless your little one is on the spectrum. A crowded beach can be overwhelming and can present more of a danger for your explorer. Weekdays and “off weekends” tend to be less crowded.

My family loves to visit the beach in the late afternoon/early evening. Benefits include less heat, less packing and less people. Sunscreen is optional, and the beach is gorgeous around sunset. Consider going to the aquarium or doing some other indoor activity during the heat of the day.

4. Bring Reinforcements.

No, you don’t need to pay a nanny. Just bring anyone who has a helpful attitude and loves the beach. My best friend’s daughter is 10 and she’s been helping me for years now. Having an extra pair of eyes and hands will give you piece of mind and enable you to relax a bit.

5. Be Flexible.

I always (try to) say, “Mind over matter.” If you’re flexible and positive, you’ll enjoy yourself no matter what challenges may come your way. If your kiddo has a meltdown at the beach… just head over to the ice cream spot. For us, problem solved! It’s vacation. There are no rules.

6. Some Crucial Items for Your Packing List.

Make sure you pack enough shade. My little one doesn’t do well with the heat, so we always pack a few umbrellas. If you don’t feel like lugging them around, you can probably rent them right on the beach. There are also delivery services that bring them right to you.

Baby pools are awesome for water play in the shade. You can pick up a blow-up pool at any beach store.

I’m a huge fan of Puddle-Jumpers. They’re a cross between a life jacket and arm floaties. No matter how my kiddos wade (or fall) in the water, their head seems to stay on top! Of course, they’re not fool proof, but they give me peace of mind.

I would love to hear what tips or tricks you’ve learned while taking your child on the spectrum to the beach!

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