The Shooting at Inland Regional Center: A Parent's Thoughts

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I am a parent of a child with autism. Ten years ago, before I knew she was on the spectrum, she received early intervention services. Services that were crucial to her development, to her ability to learn how to walk, to learn fine motor skills, gross motor skills, to speak. Her very future relied on these services — not from a doctor’s office, a neurologist or any other specialist. No, a child can only get services like these from a regional center, and today, Inland Regional Center in San Bernardino, California, where she has been receiving services ever since, was reportedly under attack by three shooters. And people were killed. And my heart sank.

I thought of the many case workers over the years who have spent countless hours advocating for my daughter who were placed in danger. One in particular will always be close to my heart. Though the school district diagnosed my daughter with autism, the Inland Regional Center did not, and this would have prevented her from receiving autism services I knew she needed. Her case worker fought to get those services anyway, and she won. She cared enough to do this for my child because she cared about my child’s future just as much as I do. And my child is thriving now, making gains, doing things I never imagined, all because of the services from the Inland Regional Center, because her case worker was on my side.

I thought of the respite care I’ve received through the regional center funding, and what blessings these respite workers have been to have in my home. Without them, I would be hanging by a thread. Their help has been invaluable in giving me peace and support while raising my special children.

Just six weeks ago, I came full circle as I brought my 2-year-old son to the Inland Regional Center for evaluation to determine if he was on the autism spectrum. He had already been enrolled in the best 39-hour-a-month early intervention program for the last 18 months, fully funded by the center. A kind, welcoming psychologist assessed him. She played with him, she laughed with him, she spent two hours with him and she listened to my story and my appreciation for the many services I’ve received from their center. I recently got a certified letter from Inland Regional Center, saying he was discharged because he had no qualifying diagnosis. He will no longer receive services from this center, but I will forever be grateful for their generosity, and to his case worker, who I pray was not harmed today.

The Inland Regional Center, and all regional centers, are the vital link in the chain of children with disabilities. They provide services that no school district or medical professional provides: they come to your homes. They sit down and listen to you. They fight for your children. They are your advocates when you are too tired to be one. They give services to your children when they become adults. They are right there with you, helping you to understand, to support and to raise your children.

To all the countless therapists and providers who have come to my home as a result of the Inland Regional Center, I say, thank you. You have made my job as a parent to children with special needs more manageable, and more hopeful.

I will forever be grateful to those selfless individuals who have fought traffic to meet me in my living room, to give me comfort like no one else could. They are an integral part of my family’s life — in fact, they’re almost like family. I owe so much to them and to my children’s development.

Follow this journey on The Special Reds.

More on the San Bernardino shooting: 

– Live updates
How to Help Your Anxious Kids When Bad Things Happen
Dad Reads Texts From Daughter in Building During San Bernardino Shooting
Politicians Tweet Responses to San Bernardino Shooting

Video From Inside Building at San Bernardino Shooting

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Why I'm Not Thrilled About the Story Behind This Decorated Cake Going Viral

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On my Facebook newsfeed this morning: a photo of a birthday cake with numerous likes and comments, and over 100,000 shares. It wasn’t a fondant masterpiece or celebrating a Kardashian; it was just a simple sheet cake with unexpectedly imperfect lettering from a supermarket bakery. The excitement and attention for the cake came from the backstory, which, according to the storyteller, has the moral that “kindness is important.”

The customer explained on her social media post that she simply chose a cake and asked the employee at the bakery counter to personalize it with “Happy Birthday” in colorful icing. As she received the cake, she noticed that the lettering was not comparable to the scrolling edible script we are all accustomed to seeing. Nonetheless, it was legible, so she smiled, thanked the employee and went to check out. At the register, supermarket employees (including the store manager) crowded her to take photos of the cake. They lauded her for smiling at and thanking the employee. One cashier said, “…even though she’s not supposed to write on cakes, you probably made her day.”

It turns out that the bakery employee who was tasked with writing the icing message on the customer’s cake is a woman who has an autism diagnosis. The likes and comments were cheering the customer’s good deed. I have devoted my life to working with people who have developmental disabilities and their families. I am always thrilled to see positive stories about inclusion and acceptance, especially on social media platforms that spread these messages so broadly. Unfortunately, I did not feel thrilled about this particular story, which seems to have garnered a lot of public attention.

Here’s the thing: I’m not sure what autism has to do with cake lettering. Maybe I am mistaken, but it sounded to me like a customer made a request and a bakery employee fulfilled that request to the best of her ability (in cake lettering, remember). According to the American Psychiatric Association’s Diagnostic and Statistical Manual, Fifth Edition (DSM-5), autism is defined by persistent deficits in social communication and restricted and repetitive patterns of behavior, interests or activities. In other words, this employee’s cake lettering ability (or lack thereof) is more likely attributed to her inexperience with cake lettering than it is to her diagnosis of autism. So why is this employee “not supposed to write on cakes?” Why was it that the customer “probably made her day” by accepting the cake? Why was the customer heralded for smiling and thanking the employee? Why are we blowing up social media about this? I have to believe all the questions would be answered with, “Well, because the employee has autism.” Would this social media post even exist if the employee didn’t have autism or the customer wasn’t made aware of her diagnosis?

As a society, we have made leaps and bounds in the short number of years since the civil rights movement for persons with disabilities. We continue to work on this as we see marked increases in the prevalence of many diagnoses, including autism. The Centers for Disease Control and Prevention (CDC) currently estimate about 1 in 68 American children have been identified with autism spectrum disorder. I ask you to consider how many people might be employed at your favorite supermarket. Do you think it’s probably somewhere around or greater than 68 people? If so, you could venture to guess that one of those employees is someone who has autism.

In this story, it was the bakery employee, just doing her job. All the children who have autism will be adults who have autism. We will be transformed as a society whether we plan for this or not. Inclusion of and exposure to persons who carry autism diagnoses will be commonplace in our communities, and it’s time to start practicing true kindness. To me, that means respect. I can’t imagine the cashier thanking the customer, taking photos of a cake and creating a viral social media post because the woman who lettered it is going through a divorce. That employee’s diagnosis is private and personal, and it has nothing to do with her abilities in the bakery.

Despite all my misgivings about the nature of the post and the general public reaction, I’m so glad this photo went viral on social media. I hope that bakery managers across America will see this photo and strike up a conversation with their employees about opportunities for training in cake lettering and other bakery duties. I’m sure there are many employees, those with autism and those without, who are eager to learn a new skill and expand their resumes.

Lead photo source: Thinkstock Images

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This Mall Santa Didn't Follow Protocol for a Boy With Autism

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During an Autism Speaks Caring Santa event in Charlotte, North Carolina, one mall Santa went the extra mile for a little boy with autism.

Maeghan Pawley, a member of Autism Speaks’ Family Services team, told the organization the boy’s parents were unable to convince him to sit on Santa’s lap. However, Santa was determined to help the child feel comfortable, so he laid on the floor with him and the two played with a snow globe.

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Image courtesy of Autism Speaks / Maeghan Pawley

“The whole staff (Santa included) was overly accommodating for all of our kids, really trying to get the best picture and create the best experience possible, regardless of how much time or patience was needed to do so,” Pawley told Autism Speaks.

UPDATE: The Touching Story Behind That Viral Photo of a Boy With Autism and Santa

Has your family had a memorable encounter with Santa? Tell us your story in the comments below (or send us a photo at [email protected]), and we may use it in an upcoming post on The Mighty.

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Amazing News for Runner With Cerebral Palsy, Autism and Epilepsy

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Kiley Lyall just made history as the first person with autism to grace the cover of “Women’s Running” magazine.

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John David Becker “Women’s Running”

The 24-year-old runner and aspiring model has autism, mild cerebral palsy and epilepsy and beat out seven other inspiring women to win the cover. Not only is it the first time anyone with autism has been on the cover of the magazine, but also the first time for someone with cerebral palsy and epilepsy as well, the magazine told The Mighty in an email.

 

We don’t even know how to thank everyone who shared Kiley’s story and voted for her during this magazine contest filled…

Posted by Kathleen Quain-Lyall on Wednesday, October 21, 2015

 

 

Lyall’s mother, Kathleen, entered her daughter into the competition at “Women’s Running” magazine after finding it online. Lyall was then chosen out of 3,000 people to be one of eight finalists.

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Courtesy of Kathleen Lyall

Lyall, who lives with her family in Bourbonnais, Illinois, has been running since she won her first relay at Special Olympics when she was 8 years old. Lyall and her mother often run together, and after they’d done many 5k charity races, Lyall set her sights on the Chicago Half Marathon. She’s now completed that race twice, most recently on September 27.

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Oliver Baker “Women’s Running”

Lyall’s love of running has even helped to improve her condition, People reported. Stress is often one of the triggers of her seizures and her mother believes that because running helps alleviate her stress, it has reduced the amount of seizures she has.

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John David Becker “Women’s Running”

“With everything she struggles with, she realized that running made her body feel so much better,” Kathleen told People. “She started talking more, and she started wanting to run more because it made her feel better.”

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Courtesy of Kathleen Lyall

We don’t even know how to thank everyone who shared Kiley’s story and voted for her during this magazine contest filled with eight very amazing, inspiriational women runners,” Kathleen Lyall wrote on her Facebook page. “Kiley will be now be able to represent all of our uniquely-abled athletes, as she not only follows her dream of modeling, but most importantly, running.”

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John David Becker “Women’s Running”

Congratulations, Kylie!

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How Our Holidays Have Changed Since My Son's Autism Diagnosis

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“I want a roll,” my son said through clenched teeth, anxiously staring at all the food laid out on the table.

“Let’s try some turkey too…just a little,” I coaxed, feeling embarrassed that my sister had worked all day long, making a huge Thanksgiving meal for us, and my son was about to meltdown over there not being “anything to eat.”

“No,” he said firmly. “A roll. And then I will have some pie.”

Another member of my family tried to help. “You can’t have pie unless you have something to eat. This is all wonderful food. Eat some of it.”

Not helpful.

I could see the pressure getting to him. The other children were joyfully making tons of noise. The adults were laughing and having fun. It was warm and loud, but it was a nightmare for my son.

He clenched his fists. I got him a roll and tried to coax him to his chair. He kicked the chair and refused to sit down. My family stared at me and the message was clear.

Are you going to let him behave like that?

Happy Thanksgiving.

My son happily opened his Christmas presents. He was excited to see the new chemistry set that was first on his list. He loved the new books. He was smiling and joyful. I took a ton of pictures and started to relax a bit. Maybe he would have a good day and enjoy himself.

Then it was time for us to leave for the airport.

I had been prepping him for days, knowing that the transition might be tough. “We will open our presents, have Christmas tree-shaped pancakes and then we get to go fly to have another Christmas with Auntie and Grammie.” All week long he had nodded his head in agreement.

But when the time came, he snapped. “No,” he yelled and started banging his head with the iPad.

I moved towards him to try and help. He took one of his gifts and smashed it into pieces. My husband yelled. “That was brand new. Some children don’t get anything for Christmas, and you’re breaking your toys before you even play with them?”

My son began wildly flailing, crying, trying to find anything to break or to hurt. He scratched his arms and his face. He scratched my arms and my face. We sobbed.

Merry Christmas.

The Thanksgiving and Christmas I just described were the last ones we celebrated before learning my son has high-functioning autism. To me, they are a blur of stress, sadness, anger and fear. I think they may also be for my sweet boy.

The holidays are a very stressful time for my family. Take my son with his with massive sensory issues and rigid thinking and then add holiday travel, sleeping in unfamiliar places, the noise of a large family all crowded into one space, new foods, no routine, the anxiety of wanting to open presents, the anxiety of all of the presents now being opened and the sheer exhaustion of not sleeping well and not eating well. Put it all together and what you get is a tough season for my son. And, if I’m honest, for me, too.

For a long time, I was bitter. I love traditions. I love Christmas and Baby Jesus. I love cookies with kid decorations and the smell of Christmas trees. I love baking pies for Thanksgiving and eating my sister’s ridiculously good turkey. It’s supposed to be the most wonderful time of the year. And yet for many years in our family, it was one of the worst.

After finally getting his diagnosis and learning more about my son’s needs, we have taken a much different approach to celebrating the holidays. We have found small changes have made a significant difference. Here are three ways we are learning to enjoy the season, while accommodating my son’s needs:

1. Food doesn’t have to be a bad thing.

So much of Thanksgiving and Christmas involves food. New foods, savory foods and foods we don’t eat except during this season. Food is one of my favorite parts of the holidays but not so much for my son. I have learned to just let him eat what he wants during celebrations. The reality of dealing with the noise and unfamiliarity is enough of a challenge for him. I have found there is no need to fight a food battle when he’s completely overwhelmed. If he just wants a roll and some pie, I might ask him if he wants me to grab him a slice of cheese to go along with it. No matter what, I encourage him to just eat what he can, and then I can enjoy my own meal.

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I also have chosen two traditions that he can count on each year that revolve around food. One is cookie baking and decorating, and the other is pancakes shaped like Christmas trees on Christmas morning. He loves both and so do I. Anything beyond that is purely optional, and I don’t push.

2. Surprises aren’t always good.

I know this is going to sound like sacrilege to many of you, but my son knows in advance what most of his presents will be for Christmas. We found the anxiety of not knowing what presents he would or would not get defeated the purpose of giving him presents in the first place. One year, he was so anxious about it that he was having daily meltdowns — and there was still a week to go before Christmas morning.

Letting him know the main gifts he will receive in advance helps him look forward to the day instead of stressing over it. I still get him little unknown treats for his stocking, and he has no idea what he will receive from other members of our family, so there is still a little bit of surprise.

3. Less is more.

When I say less, I mean a lot less. Less of everything. Less decorations, less travel, less parties, less presents, less candy, less family, less traditions, less mess. Less really has proven to be more for our family.

We are now super intentional about how we celebrate. For us, it means having only a handful of traditions, like allowing him to pick out a new snow globe each year and spaghetti (one of his only tried and true meals) on Christmas Eve. It means seeing family but for shorter periods of time and with a quiet space always available. Most importantly, the holidays have become more about talking about why we celebrate and the importance of family and less about the celebrations themselves.

Simplifying our holidays has not only helped my son, it has also helped all of us stay grounded in the reason we do any of this in the first place.

Thanksgiving is about gratitude.

I believe Christmas is about Jesus.

Anything beyond that is optional, not just for my son, but for us all.

Follow this journey on Not the Former Things.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or illness during the holiday season, and what would you say to teach them? 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. Check out our Share Your Story page for more about our submission guidelines.

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To Santa, From the Mom Whose Son With Autism Pulled You Aside

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Dear Santa,

My son, Cristian, talks about you nonstop starting in mid-October. He wants to know what your favorite cookies are, how the weather is in the North Pole and just how many toys you can fit on your sleigh. He wonders how you’ll get into our house without a chimney and how you’ll find the children who don’t live in homes. He asks how the reindeer are doing — especially Rudolph — and how they stay warm during your trip. He wants to know the best way to send you his list and how you’ll know whether he’s been naughty or nice.

Cristian has never been scared of you personally, since you always bring a smile to his face. He gets excited when he sees you on TV at the end of the Thanksgiving parade because he knows it’s your time to shine. If he’s being naughty, I might have to tell him you may not make appearance at our house on December 24. But he knows you always pull through for him. 

He loves to sing songs about you in the car but only starting the day after Thanksgiving. He knows that you’ve sent Elfis Presleigh, our Elf on the Shelf, to watch over him and make sure he’s being as good as he can be.

Cristian has turned Christmas Eve into one of his most favorite routines. We come home from church and eat one of his favorite foods — spaghetti. He then searches for the last gift that Elfis left him, which is always a new pair of pajamas. We then work on the letter to you, which is always filled with crumbs from the cookies he eats along the way. We fill up a platter with cookies for you and carrots for your reindeer friends and head to the couch until he falls asleep watching Christmas specials and dreaming of sugarplums and your arrival.

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I just want you to know all of this so you’re not offended if he has a meltdown near you this year when we visit you for a “Breakfast with Santa” event at his school next Saturday. As I’m sure you know, Mr. Claus, Cristian has autism and ADHD. Do you remember last year? It was touch and go there for a while because he wanted it to be just you, him and the photographer in the library. No one really understood, but you and I did — and that’s all that mattered. As your gloved hand grabbed mine and told me everything would be all right, I felt a wave of calmness rush over me. I remember asking him on the way home why he didn’t want anyone in the room, myself included, and he told me that it was his special moment with you.

I’m not sure what you two talked about, but he walked out of that room with the biggest smile on his face holding the bag of goodies you gave him. He wouldn’t tell me what he asked you for, but I’m guessing you pulled through for him. When I saw the picture of you and Cristian later, I could tell the way you held him tight and the smiles on your faces that you definitely pulled through for him.

I do know one thing you told him, and it brought tears to my eyes when he told me about it. You told him to be a good boy, but you further specified what you meant. You told him you know he’s special and to try really hard because you know it can be difficult sometimes for him to sit still, pay attention or hold his emotions in. But then you told him you know he’s a boy with a good heart and full of love and that you were proud of him. Santa, you couldn’t have said it any better.

Thank you, Santa, for always pulling through for Cristian. For clearing out the room so my boy could have his moment with you. For understanding all children deserve to have a special moment with you, regardless of their special needs. For being as magical and wonderful in real life as you are in his dreams. For bringing that smile to his face — a smile that will be forever engrained in my memories as the most beautiful smile I’ve ever seen. For bringing the pep to his step no matter what time it is as he drags me down the stairs on Christmas morning to see what you’ve brought him.

One day, he’ll stop believing in you, and it will be one of my saddest days as a parent. But until then, I’m going to soak up every moment. Thank you for making all of those moments possible.

Sincerely,

One Grateful Mommy

P.S. Chocolate chip or sugar this year?

The Mighty is asking the following: Describe the moment a stranger — or someone you don’t know very well — showed you or a loved one incredible love during the holiday season. 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. Check out our Share Your Story page for more about our submission guidelines.

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