When My Son Asked If His Friends Left Because of His Autism

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Two years ago, my eldest was diagnosed with autism. When that happened, a dear friend of mine said to me, “You mourn the child you thought you were going to have, Joanna, so you can embrace the child you were given.” I would like to say I have done that. When buggy (my eldest) was diagnosed, I was a flood of tears. I was terrified. When K (my baby) was diagnosed a year and a half later, well, I was a rock. Unshaken. Undeterred. Unafraid.

Two boys posing for photo in jackets with their hoods up

My family has grown to embrace autism. We see all the beauty it entails. We see and feel the struggles like other autism families; we just choose to focus on the joy.

We value the way they play (now that they actually play), and we celebrate every milestone. We hold them to high standards we would have held them to had they been neurotypical. Manners are a battle, but we are working hard on them. We are working on responsibility, so they have chores. We are working on sharing. We are working on co-play versus parallel play.

We have never given our children the idea that there is any reason they should be favored, danced around or not held to the same standards as everyone else.

My children are fantastic. They are loving, silly, fun, flamboyant and ostentatious, and they are autistic.

But today is hard. Today is hard because I am terrified for their future. Will they mainstream? Will they know love? Will they know friendship? Will the world ignore its impossible standards and accept my children? It scares me to death. I love my children. But today I’m terrified, because my eldest (who knows he is autistic and will tell me he has awesome) asked me if his friends (who went on a vacation) left because of his awesome. “A and E bye bye ’cause no like my awesome?” he asked. And no. Of course they didn’t. His friends love him. He is blessed with some of the best friends. I am blessed to be friends with their mothers. But something was there to make him think that. It wasn’t me. It wasn’t my husband or my friends. Like I said, we have never given my children the idea that they cannot do anything they want to do. So what told my sweet 5-year-old little boy that his “awesome” made him not good enough? What told him he was not worthy of friendship? Please, someone tell me what told my kid that and how I can completely remove that from his life.

Oh wait… it was the world. The world he and his brother are going to have to grow up in. Today I am terrified for their future, for the future of all kids with autism. With disabilities. Today I am terrified for my children, and for my students (I am a paraprofessional in an autism-specific classroom). I wonder if this world will grow to accept my buggy, my K and every one of my students. You see, I know, and you know if you have ever had a chance to love someone with autism, they are not a burden — they are a blessing. So someone please speak out. So no one else’s child has to assume they are not worth friendship. I believe every single person was put on this earth with a purpose. Despite what disability they may have, or maybe because of their disability. They have something to give, they have an inherit value. Shine for individuality, and embrace and accept those with a disability. Be someone’s friend. Make your mark on the world by making a mark on a life. Let them change you. Let them in. It will be worth it.

Today, I, a mom of two sweet boys who are only 5 and 3, am terrified, but together we can change that tomorrow. We can love openly and unconditionally. We can send the message that it’s OK to be different. That different is breathtakingly beautiful.

Follow this journey on A Special Kinda Life.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, 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 Submit a Story page for more about our submission guidelines.

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This Spider-Man's Secret Identity Makes His Visit to a Cancer Patient Even More Special

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For the longest time, my youngest son said that when he grew up, he was going to be a cheetah. Then, after enough people told him it wasn’t possible, he changed it: “Fine, I’ll be a scientist who turns myself into a cheetah.” That persisted until his older brother politely asked him to stop telling people that because it was “kind of embarrassing.” His alternative of becoming Pikachu from Pokemon, however, didn’t sit much better with his big brother. 

Interestingly enough, once everyone stopped asking him what he wanted to be or telling him what he couldn’t be, he boldly informed us that he was going to be a famous author. I tried to hide my excitement about this since I clearly have a bias about this creative path. My first attempt at writing a book, “Ralph and the Talking Wheelchair,” was in the second grade. With its floral, Joann Fabric cover, it now sits with the rest of my unpublished efforts in a small bin in my attic. 

To my surprise, I woke up the other morning and saw a light shining from beneath my son’s bedroom door. Typically, he sneaks downstairs quietly to get his gigantic bowl of goldfish and starts playing his iPad before we can begin monitoring his screen time, or he startles us awake when he chooses to blare Spongebob Squarepants from the TV at 6 a.m. So, I tiptoed down the hall as the sun was just peeking over the hillside, and I peered through his doorway to see him sitting at his desk. He was writing. He must have felt someone staring at him, and he turned to me and said, “Oh, hi, Mom, I am on my next chapter. Do you want to hear it?” 

Holding back tears, I replied, “Of course, tell me.” As my big 8-year-old boy proudly tried to read his words back to me, I could still see the little boy who used to pull and drag me to everything he wanted because he couldn’t get his words out. He started therapy when he was 20 months old, and he was diagnosed with autism a few months later. Language has been an issue from the very beginning, yet here he was sitting at his desk, writing stories. Even though he had trouble reading the words he had written about his Minecraft adventure story, it didn’t matter. He was writing words on a page. He was drawing intricate pictures on paper, the same pictures I know play on repeat on the reel in his mind. My boy, the same boy who shouted, screamed and banged his head to communicate, was now sharing his inner world with me and anyone who would want to read his book.

For years, I sat at a table and held up one picture card at a time, “What is it? Pause What is it – ball? Pause What is it?” He would hopefully repeat, “Ball.” Word by word, he learned language discretely. During all the years sitting at our little table working with our stack of cards, I tried not to look backwards and ask, “Why?” I tried not to look forward and wonder, “What if…” or “Will he?” I tried to live in a day, working with one goal and one word at a time. That approach brought me to his doorway, watching him write his first book. Despite my unwavering belief in him, I must admit that I assumed he would never find joy in things he had trouble with. Clearly, he is my teacher. 

His perseverance and his hard work prove that any of us can find joy in places we might have never thought possible. Who knows, maybe he will publish a book about the scientist who turns the boy into a cheetah.

boy writing at desk

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Family of Teen With Autism Fighting Criminal Charges After Public Meltdown

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In July 2015, 18-year-old Paul Gordo, who has autism, had a meltdown at a public library in Monterey, California, which resulted in him pushing a 58-year-old woman to the ground. Gordo is currently awaiting trial on a felony assault charge, and his parents, Steve and Susan Gordo, are fighting to have the case dropped.

The family hoped Superior Court Judge Pamela Butler would reduce the charges at the preliminary hearing last month, but that didn’t happen. The felony remained in place, and a misdemeanor was added for another individual who was pushed inside the library.

The Gordos told the Modesto Bee that this criminalizes the disorder, and Steve Gordo added, “You can’t prosecute someone for behavior that is a direct result of their disability.”

The family has set up an online petition that has already received more than 11,000 signatures of support, and Jill Escher, president of the Autism Society of the San Francisco Bay Area, even wrote a letter to Judge Butler urging her to drop the criminal prosecution.

Escher, who has two children on the spectrum, told The Mighty that major changes need to be made within our legal system. “One thing’s for sure, our criminal justice system, which is predicated on the idea of punishing those who willingly choose to transgress the law, is no place to address impulsive acts of developmentally disabled adults,” Escher wrote in an email.

Assistant District Attorney Jenine Pacioni disagreed. “We’re not prosecuting autism, we’re not blaming autism for his behavior,” she told the Monterrey Herald. “This is a crime of violence committed against an innocent woman. We need to protect the public by making sure criminal behavior is prosecuted.”

Pacioni added that the prosecution does not want to put Gordo in prison; rather, they would like to see him put on supervised probation, where he would be monitored and given access to services for which he might not otherwise qualify.

Gordo said the family does not want to accept felony probation, and in a message on the family’s online petition page, he wrote, “To charge him, at all, is to make his disability, itself, a criminal act.”

 

For more information, visit the Gordo family’s Facebook page and their Change.org petition page.

h/t Disability Scoop

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Dad Starts Autism Photo Project to Enlighten His Community

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A father is using his camera to tell stories of people on the autism spectrum.

Glenn Gameson-Burrows lives in Monmouthshire, Wales, with his two children. His youngest daughter, 2-year-old Aneira, has autism.

close up of a child's face.

In June of 2015, Gameson-Burrows, who is an amateur photographer, decided to turn his lens toward a subject of great interest to him — autism in his community. He embarked upon a photo project called “Magpie.”

The name “Magpie” is an allusion to his daughter’s fascination with shiny objects, and it has taken the form of a documentary-style photography project. Gameson-Burrows has 11 children and two adults on the spectrum taking part in the project so far.

Photo of a young boy in a chair.

Gameson-Burrows was surprised to find such a lack of understanding in his own community about autism — people were often rude and unkind when Aneira had meltdowns in public. He hopes the project will raise awareness about autism and help people everywhere to understand the condition a little more.

“I hope that people will realize that because a child is on the spectrum and looks at the world differently doesn’t make them a bad child or you a bad parent,” Gameson-Burrows told The Mighty via Facebook message. “My hope is that people realize autism spectrum disorder is a real disorder and not simply a child or an adult being strange or naughty… The next time a member of the public witnesses a child screaming and lying on the floor I’d like them to think, ‘Maybe that child is autistic, maybe they are having a meltdown’ and I would hope that they wouldn’t stare or make passing comments.”

A young boy on a playground.

Gameson-Burrows tries to capture his subjects’ different perspectives on the world with his photos. He doesn’t pose them or direct them at all and he captures smiles and meltdowns alike, all in an attempt to show the experience as a whole.

See more photos from the project below:

A Young girl being comforted.

A young girl smiling.

A young boy playing on a tablet of some sort.

A photo of an adult man from behind on a beach.

A young girl in a sink.

A young boy by a fence.

A young boy playing with a musical instrument.

A young boy standing very close to a TV.

A girl on the floor.

A young man from behind standing near a window.

Close up of a young girl's face.

A young girl crying on stairs.

A young girl smiling on a swing.

A boy playing on the floor with toys.

A girl standing in a field.

“Magpie” will be on exhibition at The Senedd, Modern Welsh National Assembly building this year starting in August. Visit the Magpie — ASD Awareness Facebook page for more information.

h/t BabyCenter

 

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To the Doctors Who Had Little Patience With My Son With Autism

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When anything happens outside their child’s normal day-to-day routine, moms of children with special needs immediately begin to calculate how much of an impact it will have on their children and families. Most of the time, it’s a happy adjustment, like vacation — or minor, like the shake machine. Sometimes though, life comes at you with a big whammy, and your family goes from the windshield to the bug overnight. What do you do when your child with special needs has a serious medical situation, and it has nothing to do with his special needs?

This recently happened to us. The nurse from my son’s school called me at work. He has an anxiety disorder and frequently has health worries, so she calls me a lot. Nine times out of 10, it’s really nothing to be concerned about. This time, however, she informed me that he appeared to have dislocated his knee during P.E. My husband, father and brother have all had this injury. It runs in the family, so I knew immediately what we were looking at: weeks on crutches, a knee brace, and visits to doctors and hospitals for X-rays and other tests — possibly surgery if the ligament was torn.

My heart sank. He was terrified and in pain. So my first order of business was to get him home from school. My son is large for his age and has motor control problems. I wasn’t sure if he could walk at all. The nurse seemed to think he should go straight to the emergency room. I, however, thought we should go to our trusted family doctor first, so I called for an urgent appointment. I called my husband and told him he had to leave work. My mom went to get my son. The nurse and P.E. teachers got him into our car, but my mom couldn’t get him out again. They waited in the car until my husband made it home, and he got my son transferred into his car and to the doctor. I knew our doctor, who knows my son and his issues well, would be the best place to start. If by some miracle the knee was not badly injured, we could avoid the whole hospital and X-ray situation and not expose him to additional stressors.

The news was not good. A dislocated kneecap and a possible torn ligament. He needed to go to radiology immediately for an X-ray, and he needed to see an orthopedic specialist right away. He was going to be on crutches for several weeks. I started calculating again immediately. My son’s autism and anxiety combine to make the following hard for him: waiting. Crowds. The unknown. Meeting new people. Talking to strangers. My biggest worry and fear was happening. I was going to have to take my son to new doctors.

My son has a medical diagnosis, and you would think most medical professionals would understand this, but in our experience they are not always understanding of my son’s refusal or inability to answer questions directly, look someone in the eye, or follow instructions. When we finally got into the orthopedist, he scoffed at my son needing help to get his leg up on the table. The X-ray technician couldn’t understand my son’s panic over their insistence that my husband not come into the X-ray suite. The MRI technician couldn’t understand why my son jumped every time the machine made a noise. They had little patience with him, and the average doctor’s practice doesn’t make the allowances my son needs. He needs more time to walk down the hallway to X-ray. He has a strong aversion to ink, so when the nurse hands him a clipboard and pen, he panicked a little. He needs a little more reassurance that we can handle the thigh-to-ankle length knee immobilizer. His questions about how he was going to get in the car weren’t meant to be rude — he was just taking his new situation to every possible conclusion in his mind.

We are slowly getting back our equilibrium. He’s gaining a little expertise on his crutches. The swelling is down and the pain is less severe. The testing is over, and we are only waiting on our next orthopedics appointment for the next step. Physical therapy starts soon, and that holds another whole set of unknowns, with new people and places.

We have fought a long time to find the best place for my son to belong. He fits in pretty well in his day-to-day routine. His teachers, his friends, his sisters’ friends and our frequent contacts, such as his doctor and counselor, know him and accept him as he is. So my entreaty to all the medical professionals out there who do not specialize in autism is please, please try to accept your patients with autism as they come to you — as just another person who needs your help!

The Mighty is asking the following: Describe a moment when you were at a hospital and a medical staffer, fellow patient or a stranger made a negative or surprising comment that caught you off guard. How did you respond to it? 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 Submit a Story page for more about our submission guidelines.

Lead photo source: Thinkstock Images

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The Words That Made My Day After Visiting My Son With Autism at College

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When graduation rolled around last June, my apprehension skyrocketed with how we were going to make college work for our twins, especially Reagan. When you have a son who is brilliant in so many ways, yet struggles with social thinking, is quite a loner and a former eloper (someone who wanders or runs away), you as a parent aren’t usually keen on the idea of them moving out from under your protective umbrella just because they got into every college they applied to and picked one over an hour away.

We stewed on our options. That alone was stressful enough because there were few options if he was going to go to his dream college. Either we pay a fortune for the right level of support we knew he needed or we went with Vocational Rehabilitation idea of support, which based on their poor performance with following through on certain promises before he even left high school, I wasn’t overly optimistic.

In the end, Reagan moved an hour away to attend college. After painstakingly considering the few options of where he’d have the most support and success, we allowed him to go to the school of his choice. We made this decision because there is an intensive autism/ADHD/learning disability program nearby that included housing. The autism program’s students live in apartments just above their offices so they’re in close proximity, which was exactly what we wanted for him. We just couldn’t imagine Reagan in a dorm room without supervised support, especially considering the bullying that had occurred over the years at school. He applied and was accepted into their program in August.

Reagan is now living with another young man who is also on the spectrum. They coexist and are happy with how things are going. Their advisors do work on roommate relationships, but it is a slow-going process with all the other expectations and demands they have on their plate.

Reagan is a full-time student at the college and the autism program. He is taking the required classes for his computer science degree and some fun music classes since he’s now considering a minor in music. He proudly told us after just a few days how he is able to walk or ride the bus independently to campus. His favorite buildings are the Library and the Union, and I’m certain he has scoured every nook and cranny to find favorite spots to hang out in both buildings.

With the autism program, he is learning life skills such as cooking, cleaning and doing laundry as well as improving his executive function skills, study skills, budgeting skills, social thinking skills and other vocationally geared activities/classes to help him achieve the independence he so desires from his current level of assistance in most areas of his life. He has an advisor assigned to him from the autism program who often meets with him to keep on top of his classes/assignments/tests, and she goes with him to any meeting involving the Office of Disability services at the college and meetings with his college advisor and professors. He has a team of different people with the autism program training and guiding him in the aforementioned academic, life and vocational skills as well. With all of his responsibilities, I’d say anxiety is probably his biggest issue, but having his team help him think through situations in a more effective and productive way minimizes his symptoms of anxiety so it doesn’t overwhelm him. Impressively, he is their first student to carry a full college academic load while concurrently enrolled in their program/classes.

We are in frequent contact with the personnel of the autism program, which makes our adjustment, our fears and our loosening of the reins (so to speak) a bit easier, but it’s also bittersweet. While Reagan is living in a small college town, experiencing life as a college student with enhanced opportunities with the help of his autism team to learn how to function and work as an autistic adult in this often judgmental world, I find myself feeling twinges of sadness, and if I’m honest there’s a touch of envy for the people helping, teaching and guiding his transition into adulthood.

Additionally, contact can be spotty with Reagan because he’s not a chatterbox of info or a texting fanatic. He also abhors talking on the phone. We do get weekly email updates from his advisor that are narrated by Reagan, which is enormously helpful in keeping us in the loop. He occasionally texts me pictures of meals he’s learned how to make with help, updates on school happenings and asking for money.

In mid October, we were invited to a Parents’ Weekend to hear about Reagan’s progress with the his academics (college) and with their autism program. Per their report, he was doing exceptionally well overall. What made my day, though, was to hear from a faculty member with the autism program who works with Reagan say, “Reagan, more than any student I’ve worked with, talks about and appreciates his family more than anything else in his life.” That statement alone let us know we’ve done well raising this kid.

Liz with her son
Liz with her son

We were thrilled when he finished out his first college semester with 3.875 GPA. On top of that, we saw many positive changes over Christmas break while he was home that confirm to us the program is working and we made the right choice. He was also invited to a special dinner last week that only “high achieving freshman and sophomores” in the computer science field were invited to attend that is great for learning about opportunities and networking for internships.

I’m so proud of him and all he’s accomplished.  College certainly seems to be agreeing with Reagan.

Follow this journey on Our Version of Normal.

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