6 Requests for the Mainstream Teacher of My Child With Autism

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Dear General Education Teacher,

I just heard you’ll be my daughter’s mainstream teacher this year. Congratulations! You’re so lucky. I’m not sure how many students with special needs you’ll have in your class, but each and every one will always add something incredible to the class dynamic. Everyone will grow, learn and remember this year a little bit more than others. That goes for you, too! Here are six things I ask of you:

1. Treat her like every other student.

She’s just another kid in the class. Make sure you speak to her in the same way, with the same tone and at the same volume as you do other children. Her hearing isn’t affected by her autism, and yet, some people think they need to speak louder. It might take her longer to process all the things you’re saying, so have patience. But there’s no need to overly simplify your language. She’s a student in your classroom and on your roster. Please treat her like she belongs there.

2. Presume competence.

She’s got a lot going on in that head of hers. She is very capable and very determined when she’s encouraged and gets the message that someone believes in her. Believe in her. Provide the same opportunities to her as you do for your other students. She is competent. Raise the bar. She may not always be able to reach it, but let her know you believe she will one day.

3. Make sure she’s welcomed.

Before she joins your class, take time to explain to your other students why everyone deserves a spot in class and why everyone deserves to feel like they’re wanted and belong. Here’s a list of books you can even share with them to explain disabilities. Encourage them to reach out and try to engage my child. Too often kids like mine are sent the message that they don’t count and don’t belong. Drive home that every student belongs. Let them know your classroom is a place where everyone is treated the same, which brings me to my next point…

4. Inclusion benefits everyone.

It provides your typical kids the opportunity to meet, engage and befriend someone different from them. It fosters independence, pride and compassion. Find those compassionate kids and encourage them to sit with my child at lunch, play with her on the playground and maybe even spend time with her after school. Friendships don’t come easily to my daughter. I’ll depend on you to let me know if there are students I can reach out to for weekend playdates. Inclusion can be a real-life anti-bullying campaign.

5. Communicate honestly with me.

When we meet and discuss her progress, tell me how she’s really doing in your class. Please don’t patronize me by saying, “She’s doing great!” if the subtext is “for a child with special needs.” I rely on you to help shape her educational experience and to help me decide which environments she will thrive best in and where to place her in the future.

6. Expect to fall in love.

If you embrace being a part of my child’s team, you’ll never want out! Once my child touches your heart — and she will most definitely touch your heart — you’ll probably become an advocate for her and for other students like her. You’ll feel overwhelming joy when she understands lessons that once seemed too tough and meets milestones that once seemed too far reaching. You might just remember why you became a teacher in the first place and find a renewal of energy and spirit. Yes, just one student can make that much of a difference in the life of a teacher — and one teacher can make that much of a difference in the life of a child like mine.

Dani Gillman the mighty.1-001

A version of this post originally appeared on Birdhouse for Autism.

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To the Young Lady Who Used the R-Word to Describe My Son With Asperger’s

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One day, my son Aaron’s manager at the grocery store was speaking with a young lady. The young lady was talking to the manager about getting a job there. The young lady became upset when the manager informed her there were no openings at that particular store. In her anger, she yelled out as Aaron was walking by, “You can hire retarded folks like him [pointing to Aaron], but you can’t hire me?” Aaron’s manager then told the young lady her comments were inappropriate and asked her to leave the store.

This is my response to that young lady.

To the young lady who used the R-word to refer to my son in her rant while he was working:

There are six things I wish you knew about my son, Aaron:

1. Aaron has successfully worked with others since he was a young boy.

He helped my father deliver newspapers in eastern North Carolina and southeastern Virginia. He did not just deliver the papers to customers; he had to follow multiple-step directions in order to fulfill each order correctly.

He also had to interact with my father’s customers. He came to be known as “Mr. Holley’s little helper” because he was just 7 and 8 at the time.

2. While in high school, he worked, went to school and played sports in the fall, winter and spring.

Again, he had to follow multiple-step directions in order to complete his job duties, something that can be difficult for those on the spectrum. However, because he was taught by his parents to work hard and always ask questions until he had a clear understanding of how to complete his assignment, he was praised by his co-workers and supervisors for his strong work ethic and attention to detail. Others he encountered while working praised his politeness and willingness to help others.

3. This same young man just completed his first year of college.

That experience was not without its difficulties, but Aaron persevered. He did not shy away from the challenges and was able to finish with a great GPA. He recently started his second year of school and is still determined to make a life for himself.

4. Aaron is a helpful and humble person.

During his senior year of high school, I asked him what he thought his position or job was on his football team. He responded without a beat, “My job is to help my teammates whenever they need me. If they get tired, I can take their place on the field until they have had enough rest.”

Most athletes might want to have all the playing time during their senior year. But Aaron assured us he was fine “helping out.”

5. Aaron is a great encourager.

Even though he has had periods of loneliness and bullying, he has not allowed that to scar him emotionally. Instead, he makes sure those who have been victimized by others feel loved, accepted and wanted. He often shares encouraging posts on Facebook. He’s shared how his friends find comfort in those posts.

6. The most important thing I want you to know is that Aaron is loved by many people.

Your comment, once it became known to others, was quite upsetting. You see, early on, my family and I prayed. We prayed for God to place angels in Aaron’s life to help him along the way. I believe God has not disappointed us.

Aaron has angels everywhere. It would be wise of you to watch your words; you never know who may be listening and who may be negatively affected by your words.

Why did I share six things instead of the usual five or 10? Because Aaron has always followed his own path. He has never allowed what others thought of him to keep him from doing what he knows is right to do.

This list is dedicated to my oldest, my Aspie, my Aaron. Keep blazing your own path, son!

The Mighty is asking the following: Describe a moment you were met with extreme negativity or adversity related to your disability and/or disease (or a loved one’s) and why you were proud of your response — or how you wish you could’ve responded. 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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Occupational Therapy Students Build Cool Invention for Chef With Cerebral Palsy

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Ethan has always loved everything having to do with food. The 12-year-old loves cooking and watching cooking shows. He dreams of one day becoming a chef.

Ethan also has cerebral palsy, which can make it difficult for him to move around the kitchen. So when Ethan’s neighbor, an occupational therapist, asked if he could use Ethan as one of his class’s subjects for a project, the Ethan’s family jumped at the opportunity. The class wanted to design something that would help Ethan in everyday life.

“We knew right away we wanted something that would help him in the kitchen,” Karla Holley, Ethan’s mom, wrote in a blog post about the project.

Ethan and his family met Hannah and Brittany, two occupational therapy students from the Murphy Deming College of Health Sciences near their home in Virginia, who would be working on Ethan’s project. Ethan and his parents worked with the students to brainstorm a design that could help Ethan with his cooking projects. Together, they came up with an idea for a multi-function cart, similar to the utility carts sold at IKEA.

Before the students got to work building, Ethan and his mom determined some requirements: the cart had to be easy to maneuver around the house, and Ethan wanted to be able to use it in his room as well as in the kitchen. They also wanted it to have ample storage room and include a surge protector so Ethan could plug in kitchen gadgets or charge his electronic devices.

Most of the construction took place at the occupational therapy school, but Ethan helped with some of the building from home.

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The finished product includes plenty of storage space, a surge protector and a baking sheet where Ethan can store dishes and leave hot plates to cool down. The wheeled cart is also flat on one side, so he can pull it up to his bed or a counter and use it as a desk.

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Ethan with the occupational therapy students presenting their final product

“Ethan is so proud of his new cart and will get so much use out of it,” Holley wrote in her blog post. “Let’s get to cookin’!”

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To read Holley’s original blog post about Ethan’s cart, head here.

Photos from Karla Holley’s blog Small Town Rambler.

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4 Back-to-School Tips for Parents of Children With Mental Illness

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The time leading up to school can bring on a sense of despair and stress for parents of children with mental illness. It can be tough to make sure they get everything they need. A lot of general educators do not receive training in mental health disorders and the only resources they have, if they chose to utilize them, are the special educators, counselors and school psychologists. This can be scary to any parent.

From someone who works with students with emotional and behavioral disorders, here are some tips that could make the transition to school a little easier.

1. Know your rights as a parent.

If your child requires an Individualized Education Plan (IEP), teachers are required to follow specific goals that have been written by and agreed on by you and your child’s team. Teachers need to respect these goals. If you don’t believe your child’s new teacher is following the IEP., you can call an IEP meeting at anytime. That is your right as a parent. Every year, you should also be given a booklet that explains all of your rights and your child’s rights regarding special education as directed not by the school, but the federal government. If you do not receive a right’s booklet, advocate for yourself and ask for one. Arm yourself with the knowledge needed to support your child throughout their academic career. 

2. Meet up with your child’s teacher.

Your new teacher may not be like the last teacher your child had, so the transition from last year to this year can definitely be stressful. Make sure you meet with your child’s teacher before school starts or set up a time to speak with them one-on-one. Communication is key during the school year for your child’s success. Any information you can provide to your child’s teacher is going to be helpful. If your child needs certain items to keep them calm, inform his or her teacher. If you want daily communication, let the teacher know. Something to keep in mind is that a teacher is potentially getting up to 30 new students, so any information you can provide will help the teacher be proactive when addressing your child’s needs.

3. Do not assume your child’s teacher knows everything. 

If your child is in regular education, do not assume the teacher knows everything about your child’s disorder. While giving too much information could offend a veteran teacher, you do want to bring some information specific to your child’s disorder. Knowledge is everything. Even if the teacher has access to the child’s IEP plan prior to the school year, giving the teacher an overview will be beneficial to your nerves, and will help the teacher prepare. 

4. For the first couple of weeks, be patient. 

Each teacher is individual just like each student is individual, and most want to do what’s best for your child. Be patient with the teacher for the first couple of weeks. If you still don’t believe your child’s needs are being met, make an appointment to address the situation right away. If the problems still exist, ask to sit in on a class to see how your child is acting. 

While special education teachers should be better equipped to address your child’s needs in the classroom, general education teachers may need some extra guidance. Don’t be afraid to talk to any staff who have direct contact with your child to ensure your child’s needs are being met. You are the best advocate for your child, so feel empowered. There is nothing to be ashamed of when talking about mental illness. It’s a part of life, and doesn’t mean your child is less valuable than a typical peer. Push for your rights. Know your rights. Ask questions. The key to advocacy is to show your child they are worth the fight.

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17 Secrets to Making Your Hospital Stay Easier

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Going to the hospital is rarely an outing to look forward to — let’s face it, it’s not the zoo or an amusement park. Still, just because hospital stays are often necessary doesn’t mean they have to be completely unpleasant.

With this in mind, The Mighty teamed up with Children’s Hospital of Wisconsin to ask patients what tricks or tips they use to help make their hospital stays easier.

This is what they had to say:

1. “One thing my parents did when I was a child was a bring bag of little presents, one for each day I was there. While they weren’t big items by any means, maybe a sticker book one day and a small toy the next, it gave me something to look forward to every morning during my stay.” — Julie Ovans

2. “Glow sticks for ‘glow parties’ at night!” — Tiffany Johnson

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3. “We ask if we can have the window bed if it’s open, as my son likes to watch the helicopter land and daughter likes to watch the birds.” — Lorie Crowell Doll

4. “Find out if they have a treatment room for blood draws and procedures. That way the hospital room remains a safe place for your child to rest, eat and play.” — Michelle Fornarotto Waldman

5. “Get to know the ladies who serve the food. My son was always happy with the seconds they snuck him.” — Michael Whitehead

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6. “We bring toilet paper from home if we know we’re staying for several days. It seems silly, but it’s a small comfort and that’s one less uncomfortable thing.” — Amber Walls Fosler

7. “First thing is as always, be prepared. Remember when you were around 7 months pregnant and had your bag, your soon-to-be newborn’s bag, plus probably another bag for your husband all packed and ready to go? Yeah, do that all the time, updating with favorite toys, snacks, clothes, etc. This took me a few times before I got it right, but just having a few things to comfort your family is incredibly helpful… Make it fun, try to laugh even if you don’t have it in you.” — Candi Jarocki

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8. “When my son needed some testing… on his 7th birthday we had a huge roll of brown paper and taped it across the whole floor of his room. [We] bought markers and new cars and colored streets, houses and the hospital on it. He drove his cars up and down the streets to the hospital and houses and everything else drawn on it… it made it an awesome stay!” — Nichole Mae’s

9. “Get up, shower and get dressed. Every day. It helps me feel like a real person and helps to keep a sense of normality when things get turned upside down.” — Kelsey Alene Shepherd

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10. “I brought my own blow-up mattress, bedding and pillow. I bring blankets for my child and his crib mobile and things to make it feel like home.” — Steph Reitberger

11. “If hospital staff asks if you need a break and they will sit with your child, take them up on it. Then take a walk. I did this daily during our last hospital stay and it helped keep me relaxed and less stressed.” — Beth Winters

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12. “Stop thinking about home. Think of the hospital and the Ronald McDonald House — or wherever you’re staying — as home.” —  Mandie McLamarrah

13. “Refresh yourself daily with the mindset of ‘I want my child to thrive, to get better.’ That is ultimately the only thing that’s important, not, ‘When do we get to go home?’ You’ll drive yourself crazy —  it’s one of the most common things I’ve heard from parents with kids in the hospital.” — Christy Cerfus

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14. “I took daily walks outside during our three-week stay. You need to get out and breath non-hospital air once a day. While scary at first to leave our [child] behind even for a short time, I came to depend on the wonderful staff to be her guardian and keeper. They never let me down! [They] even took Polaroids if she woke up and I missed it. That time let me regroup and put things in perspective.” — Tracey Olson Rigstad

15. “I brought a dry-erase calendar and made sure every day something positive that happened was written down, whether it was a lab result, no fever, steps walked or a special visit. During long stays, the days just seem to blend into one another.” — Marc Daniloff

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16. “The nurses (and staff) are amazing and having even a few minutes of social time with them was huge for me, otherwise sometimes the only other person I had to talk to was my baby and that can be lonely.” — Brianna Miller

17. “Get to know the families around you. It helped [me] greatly.” — Andrew Court

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 *some answers have been edited for brevity

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How the Comfort of a Horse Helps Me Deal With Fibromyalgia

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When you live with a chronic illness, you seek comfort in any place you can find it. For me, comfort came in the form of a 1,000-pound Thoroughbred mare. Whisper, an ex-racehorse, entered my life while I was in college. I bought her just before my senior year while double majoring in music performance and English and promised her a forever home.

I could never have guessed what an integral part of my life Whisper would become. Unbeknownst to me at the time, I was suffering from fibromyalgia and had been for years. My fibromyalgia would go undiagnosed for three more years, but I knew that something was wrong. Chronic pain, fatigue, brain fog…I had all of the symptoms, but no one had been able to put them together.

As my symptoms worsened and intense back pain was added to my ailments, Whisper became more and more important. I suffered “flare” days when the pain in my hands was so great that I couldn’t saddle Whisper, so I took to hand walking her around the neighborhood and into the wooded trails that stretched for miles beyond the barn. On days when I could mount but suffered from back pain, I climbed into the saddle and let Whisper’s motion and body heat loosen my sore muscles. Often I felt better after a ride than I had all day.

It was when fibromyalgia ended my music career that Whisper became a truly vital part of my life. After graduating college, I took time off before pursuing a graduate degree in music performance so I could get to the bottom of the pain I was experiencing. Two years later, I would receive my fibromyalgia diagnosis. Not knowing what fibromyalgia was, I left the doctor’s office and went to a local McDonald’s for the free Wi-Fi to research the condition online. Reading the list of symptoms was like reading a description of my life for the past five years.

The fibromyalgia diagnosis brought with it the sad realization that music performance would never be a viable long-term career. My body would not hold up to the rigorous practice schedule that I had forced it into during college, making graduate school and any sort of upper-level performance out of the question.

This loss hurt more than the physical pain, and I grappled with the unfairness of it all and what this meant for my future. So I turned to Whisper. I spent time just sitting in the barn and found taking Whisper on walks was a way I could escape from my thoughts, even if just for a little while. There were days when I could feel the emotional pain roll off of me, so I would go visit with Whisper. She couldn’t erase the pain, but she could ease it, ever so slightly.

Having a chronic illness that’s invisible, as fibromyalgia is, there are days when I can get frustrated with the world. I almost wish I had a visible illness so people could understand when I’m having a particularly painful day. The mental toll of living with a chronic illness has become so great that I can feel beaten down.

With Whisper, it didn’t matter. She could tell when I hurt and when I didn’t have the mental strength to be able to tack her up and go for a ride. And she didn’t care; she would stand with me while I groomed her or hand grazed her. She didn’t judge, and most importantly, she was always there.

Chronic pain gradually erodes away your strength. Whisper gives me more strength than I ever would have had, and when I’m riding, she makes me feel like I’m capable again. I can’t possibly describe the power with which she canters or the surge when she pushes off to carry us both over a fence. She is strong, powerful and capable of racing the wind, and when I am with her, I am, too.

Paige Cerulli the mighty.4-001

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