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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When I Opened Up About Almost Experiencing Sensory Overload on a First Date

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I went on a date recently with a girl. I’ve known her for a while (we’re both members of a local choir) but never spoke to her. I never spoke to her because I was shy and unsure how to start a conversation with her. One day I found something to say to her, which was, “Well done,” because she sang all by herself in our choir’s concert.

She smiled at me and said, “Thanks.” After the concert we sat together talking for ages and realized we had a lot in common. We then spoke again many times via private messages on social media. This eventually led to our first date, which was lunch inside a busy restaurant. I had a really nice time, but it was too busy and I didn’t feel 100 percent comfortable and was struggling to keep conversations going.

We were sitting at a table for two that was part of a row, and this made me feel a bit enclosed. There were other conversations going on at the same time. The noise levels all go in at the same level, and my brain was frantically trying to process everything. I was beginning to overload but managed to keep it under wraps for the date’s duration.

Later that day I posted this on my Autistic Genius (my website) page:

“Was really tired and hungry and in a busy restaurant, thought I was going to overload. I was fine but found it hard to make eye contact with the person I was with and struggled to hold a conversation. Anyone else ever get like this???”

She later saw this post and immediately sent me a message on Facebook:

text message between two people. Person 1: "just saw the status you posted yesterday... if you ever think somewhere is too busy i am more than happy to go somewhere else quiet with you." Person 2: "It's fine but thanks." Person 3: "I didn't even notice..."

text messages between two people

Text messages between Tom and the girl he went on a date with:

The girl: “Just saw the status you posted yesterday… if you ever think somewhere is too busy I am more than happy to go somewhere else quiet with you.”

Tom: “It’s fine but thanks.”

The girl: “I didn’t even notice…”

Tom: “It’s OK and thanks, you’ve made me really happy.”

The girl: “What are you thanking me for.”

Tom: “For being really understanding, that’s the first time anyone’s been that kind to me, thank you so much.”

The girl: “Well get used to it… I couldn’t imagine being mean enough to just make you deal with it…” It’s mostly outside in Worcester so we should be able to find somewhere quieter x.”

Tom: “Well people don’t make you deal with it. They just don’t believe or think you’re being daft. Honestly anywhere’s fine, it’s just that day it was too much.”

The girl: “I don’t think you’re daft so you can tell me as much or as little as you want.”

Tom: “Same to you.”

This message made me feel incredible because for those with disability, conditions or things that make us unique or whatever you want to call it, we struggle sometimes to be accepted. We can be sidelined for being different/unique. But when someone holds out their hand and accepts me for who I am and wants to be supportive, it melts my heart every time. This girl could have walked away and never spoken to me again, but she didn’t.

What I will say is that this girl and I have continued to meet up. It’s still early days in the relationship, but I am feeling optimistic about the future.

To this girl: Thank you for all the acceptance and understanding you’ve shown me. I hope everyone meets someone as wonderful as you.

Follow this journey on Autistic Genius.

The Mighty is asking the following: Share a dating or relationship story related to your disability, disease or mental illness. 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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Mom’s Idea Will Help Protect People With Autism and Dementia in Her Community

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This mother came up with a way to help firefighters and police officers identify and better protect people with conditions like autism and dementia.

Rose Cutting, from Fennimore, Wisconsin, has a son who was diagnosed with autism at three years old, WMTV News reported. Together with Lancaster Police Chief Debera Reukauf, Cutting came up with the idea to provide a sticker for families like hers to display on their homes or cars to let law enforcement know that someone in the household has a medical condition.

Photo of medical alert sticker

When officials arrive at the scene of an accident or respond to a call and see the sticker, they will be able to find out what kind of medical condition that person might have by looking up an address or license plate in a database. That way, officers will be able to get more information about the situation they are entering and be better equipped to help the people involved.

The sticker and database will be used mainly to identify people with Alzheimer’s, dementia, diabetes, epilepsy, food allergies and autism, and signing up for the program, which involves having infomation stored in the database, is voluntary.

This is the world we live in,” Reukauf told the WMTV. “There are more and more things coming up and we have to learn how to adapt and do a better job at our job.”

The idea to use decals or stickers to alert first responders to people with autism isn’t new, but, including the use of the database, it’s new to Cutting’s small, rural town.

Get more information from the video below: 

 

 

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When the Coach of My Son With Autism Left Me a Note I Really Needed

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It was just another hot, exhausting summer day in Indiana. For the most part, our days are the same. My two sons have autism, and we find ourselves living a daily routine. I picked up the boys as usual from their full day of applied behavior analysis (ABA). Once we arrived home, it all started.

My 5-year-old is nonverbal and requires regular care. I was in my second month of potty training him, and I was starting to feel like a failure. Amidst this, I have my 4-year-old son with autism who wants my undivided attention to play superheroes with him. On one particular evening, I was running on fumes. My non-sleeper had spent the last two nights up. I was sleep-deprived and needed a boost to keep going.

Lo and behold, I got want I needed that night. I felt tears coming to my eyes. I held them in, but there was no doubt I felt like a complete failure as a mother at that point. I didn’t think anything could help, until I found the note!

note on a napkin
Note on a napkin that reads: “Have a great evening! You’re a Supermom!”

I stepped into the kitchen to go through their book bags from the day. One of my son’s coaches left me a note in his book bag. To this day, I have no idea which one did it, but it was what I needed that night!

At that moment, I let the tears flow from my eyes. Someone knew and appreciated what I was going through and took time out of their day to write a few words on a napkin. That is all it took for me to get my boost and feel re-energized.

This is my journey, and I take great pride in it. I would be lying if I said I never got tired, because I do. It gets mentally and physically exhausting. However, on this particular day, in the snap of a finger, I felt like I was on top of the world. And it was all from one simple napkin.

The Mighty is asking the following: Share with us an unexpected moment with a teacher, parent or student during your (or your loved one’s) school year. 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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When a Movie Theater Manager’s Kind Acts Helped My Son After He Was Bullied

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Much has been written on the subject of autism and bullying. My son hadn’t been bullied before. I created a safety net around my son, making a point of knowing his surroundings and all the parents in his classroom, overlooking and monitoring his therapists, having daily contact with his teachers and surrounding his weekends with family and friends I felt confident would accept him as he is — a person, a human being, a child with feelings and emotions. But it happened one day. My son was bullied. It’s a date I will never forget.

Our Friday nights consist of going to the movies, regardless if we are on vacation. It was a routine night out. French fries with cheese curd, no gravy, a slice of cheese pizza and water. The movie: “Alvin and the Chipmunks.” It was a great night, the movie was funny, my son was engaged and I was enjoying my mother/son bonding time. But after the movie, my son experienced an act of bullying that left him traumatized and visibly upset.

What mother doesn’t hurt when her child is upset? What mother doesn’t feel the pain when someone else deliberately hurts your child? Why? That is the definition of bullying: there is never a real answer, and if there is, it never makes sense. The person who bullied him didn’t care about his feelings.

Calmly, I approached the manager of the movie theater, a soft-spoken, pleasant gentleman. I explained what happened. Immediately he took us to sit down in the room where birthday parties are held, a special room with posters and colored chairs a room that gave my son space to himself to calm down and be distracted by all the sensory stimuli the room had to offer. I welcomed the gesture. He patiently listened to the course of events, offered me some recourse and apologized for an incident that was not his fault except for the fact that it happened at his place of work. After writing down the incident, I decided without adequate description from my son, not much could be done. It does not always take much to help someone; offering compassion, lending an ear and being thoughtful is many times more than enough.

The gentleman watched as he tried to calm and district himself, and he offered words of comfort to us. He read my complaint and saw we attended the movies every week. Although I was satisfied with his actions up to now, he went above and beyond. He gave my son a poster and movie tickets to attend next week’s show. Even without the movie tickets, we would have returned to the movie theater because it is our weekly routine. But the gesture of kindness means more to the heart than one can explain in words.

We left the theater happy — my son holding his poster and me contemplating the events, grateful to the manager for his support and thinking of all the good people in the world. But there can be people who are not so patient, understanding and can even be downright mean. When I reached the driveway to my house, I will not lie, I broke down in tears.

I have to remember for every person who is not so nice, there are more people who are nice, compassionate and loving. Thank you to the movie theater manager for being the kind of person who makes me believe in this world.

The Mighty is asking its readers the following: Describe the moment a stranger — or someone you don’t know very well — showed you or a loved one incredible love. 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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Autism Takes Center Stage in New Family TV Series

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Autism will take center stage in a new family TV drama airing this spring.

“The A-word,” a one-hour, six-episode show, will air on the SundanceTV channel following the BBC premiere, according to an AMC Networks press release.

The show is a portrait of a fictional family after their 5-year-old son Joe (played by Max Vento) is diagnosed with autism. The series follows them learning to understand the diagnosis, facing differing parenting philosophies and dealing with the intertwining and complicated lives of their relatives.

Photo of the cast of the new TV show "The A-Word"
Photo courtesy of AMC/SundanceTV

“[The show] is hopeful, honest and ultimately about the power of family and the range of issues that families can face together, from autism to aging to adultery,” Joel Stillerman, president of original programming and development for AMC and SundanceTV, said in a press release. “We can’t wait to share it with our growing universe of SundanceTV viewers.”

“The A-Word” is an adaptation of an award-winning 2010 Israeli series called “Yellow Peppers,” from creator, writer and director Keren Margalit, who is also executive producer on the UK series. This announcement of the show comes nearly a year and a half since the premiere of the sixth and final season of NBC’s critically acclaimed show “Parenthood.” “Parenthood” centered around the story of the Braverman family and often featured the challenges of one of the characters, Max Braverman, who has Asperger’s syndrome in the show. As it turned out, Max Braverman was based off the son of the show’s creator, Jason Katims.

Julian Maha, M.D., the founder and CEO of KultureCity, an Alabama-based autism nonprofit, thinks “The A-Word” has the potential to have a positive impact on our society, but that depends on how the story is told.

“Programs like ‘The A-Word’ bring a very interesting concept to television,” Maha told The Mighty in an email. “At the very least, it will help create more awareness on the topic of autism. At its best it could help promote autism acceptance and inclusion. The key is in the show’s execution and storytelling. If that is successful, this show could go a long way in helping the general public understand that autism can be an opportunity to live a life without limits outside the box.”

The Mighty reached out to Sundance to find out if anyone with autism is or was involved in the creation or production. A representative says right now, all the info available to share is in the original press release.

h/t Disability Scoop 

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