When a Woman Left Me a Note About My Son in the Doctors’ Waiting Room

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I’ve learned a lot having a child with special needs. I have learned a lot about his many diagnoses — Phelan-McDermid syndrome and autism among them. I have also learned a lot about myself and other people. Sometimes my son’s presence brings out the good in other people and, unfortunately, sometimes the bad.

As he was growing up, we heard it all: “Why does he walk funny?” and “You need to teach him some manners.” But two negative moments in particular stick in my mind.

When he was young, he had to wear glasses since he was diagnosed with myopia along with optic nerve hypoplasia. He also couldn’t sit up until he was 18 months old because his hypotonia or low muscle tone, so he would lie in the baby carriage while we made our way out and about.

Most of our outings in his first few months were to doctors or specialists to get tests, scans and bloodwork – you name it, he endured it! So it was nice for us to get out to the shops one day. I was looking at some books and turned back to the baby carriage to find a lady, pointing and laughing at my son and his glasses and gesturing her husband to come and look. Yes a grown woman did this! As I was only just starting my journey of motherhood — with the extra bonus of having a very special little boy with a disability — I was mortified. I rushed back to the car and came home in tears.

On another trip out, another grown woman walked past us, looked at my son in his glasses and remarked to her companion, “Did you see him? How ridiculous!” Again, she was referring to his glasses.

As we’ve gone along our journey together, I’ve learned to shrug it off. Of course, this is easier to do on some days than others. Maybe some people need to keep this old adage in mind: “If you can’t say something nice, don’t say anything at all.”

On the flip side, we also come across some lovely people in our travels.

We were waiting in the doctors’ waiting room at the end of the school holidays. My son can sometimes get in other people’s space, and I was in no mood to deal with people today. To minimize this, we went to the children’s area. He could also get a good view of the parking lot from there, since he loved watching cars and waving at people as they were coming and going.

He’s nonverbal so he makes his happy noises when he’s excited. We were in the play area by ourselves. There were big windows between us and the other patients, so he didn’t seem to be bothering anyone. We got a few quizzical looks and a few smiles.

When we finally got in to see the doctor, my son was as uncooperative as ever. I don’t blame him after years of being poked and prodded by every sort of medical specialist you can imagine!

Then we came out and to the reception desk to sort out our payment. The receptionist said, “Another patient gave me this to give to you. I’m not sure what it is.” I was a little worried as she handed me a folded note.

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The note read:

I wanted to give you a huge hug – you looked like you needed one.

Your son is a lovely young boy and I hope he brings lots of love + sunshine to your life.

Keep smiling –

an ASD Mum xx

“Is it OK?” asked the receptionist. “Yes, it is a lovely note,” I replied. I paid and went out to my car. I sat for a moment and read the note again with tears running down my face. It was the little lift I needed. And yes, he does bring lots of love and sunshine to my life! It was a beautiful gesture from someone who has been there.

Thank you “ASD Mum” for taking a little time out from your day and doing this small gesture to make another mom feel better.

Special needs moms really do have each others backs!

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Boy With Cancer Can’t Leave Home Often, So Friends Transformed His Backyard

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Bryan Carroll was diagnosed with leukemia last year and doctors say his prognosis isn’t good, Global News reported. The 7-year-old lives in Nova Scotia, Canada, and has to spend most of his time at home because he’s too sick to be around crowds of people.

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Because Bryan has to be home so much, Leanne Christie, a friend of the Carroll family, thought it would be nice if the whole family could enjoy some time outdoors together, CTV News reported. However, the Carroll family backyard was in disrepair.

So, Christie made some phone calls to family and friends. On Wednesday, July 29, about 50 people showed up at the Carroll residence ready to beautify the backyard. While the family was away on a day trip, volunteers laid new grass, installed a swing set, put in furniture and even bought new toys for Bryan so the family could enjoy their time together at home in the outdoors.

To come home to this – it’s fantastic,” Sean Carroll, Bryan’s father, told Global News. “My son — that’s what’s most important, and enjoying the time we have left with him.”

Watch the video below to see the renovations:

Visit the family’s GoFundMe Page for more information or to make a donation.  

h/t HuffPost Good News

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New Book Shows Kids What Happens When a Loved One Has Alzheimer’s

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A new children’s book could help kids better understand why their loved ones who have Alzheimer’s disease or dementia act differently than they used to.

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Written by Julia Jarman and illustrated by Susan Varley, “Lovely Old Lion” tells the story of a young lion named Lenny and his grandpa, King Lion, who has Alzheimer’s disease. No longer the playful grandpa Lenny always loved to play with, King Lion forgets names, doesn’t remember the rules to games and seems less interested in Lenny altogether. Confused and sad about what’s happening to his grandpa, Lenny turns to his friends and his grandma for help. Together, they all help King Lion by reminding him of good times past and encouraging him to play with them even when his memory isn’t clear.

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Jarman, who lives in Bedfordshire, England, decided to write the book after a librarian friend told her there was a desperate need for books explaining dementia to children.

“So many children are feeling confused and upset because a grandparent is behaving oddly and even hurtfully, forgetting their names and not recognizing their faces,” Jarman told The Mighty in an email. “Many grandparents take such an active role these days, playing with grandchildren and helping with homework, so it’s very obvious when they stop.”

More than anything, Jarman wants children to understand that the changes in their loved ones due to Alzheimer’s disease are not their fault. She also hopes this book inspires young readers to do what they can to help, just as Lenny and his friends do for King Lion.

“They can’t cure dementia, but they can do something to make their [loved one] feel a bit better,” Jarman told The Mighty. “I just hope it does a little bit to help educate people and make them feel empowered to do something.”

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Lovely Old Lion” is currently available for preorder and will be downloadable for Kindle on August 6. The book will be released in print in September 2015. 

Photos courtesy of Anderson Press.

h/t Day Nurseries U.K.

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When I Told My 4-Year-Old Daughter That Nobody’s Perfect

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“I’m 4 today. I can’t walk. Will I ever walk?”

This was the first thing my daughter Julianna said when she woke up on her 4th birthday. A few seconds after the words left her mouth, she changed the subject.

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One of the most remarkable things about J is the way she accepts her physical condition. There’s no self-pity, ever. She knows all about the things she can’t do; she just doesn’t feel bad about it.

I wish I could say she learned this from me, but it’s quite the opposite. Today I’m able to read her words with just wistfulness. When I actually heard those words almost a year ago, I was gutted.

When your child has an awful disease, your heart can be broken in a million different ways. There’s the pain of unrequited hope when she doesn’t defy the odds. You ache — sometimes physically — when they lose milestones. And if the incurable disease becomes terminal, there’s despair. It’s too much for the already fractured mother’s heart.

I’ve been in all those places, and I know there will be more to come. For now, I’m in a better place. It doesn’t mean I’m at total peace with our situation. I believe there are some questions that cannot be answered on earth, and I still wrestle with the cruelty of it all.

The shift came gradually. As with most things related to J’s illness, I’ve found it best to follow her lead. She has the important things figured out. If she doesn’t mourn for a life she cannot have on this earth, how can I dwell on the what-ifs or why-nots?

My time here with Julianna is limited, and there’s so much more joy to experience. I’m grateful this is my focus now.

Below is a conversation Julianna and I had in April 2015:

J has watched “Beauty and the Beast” and now wants to role play.

Julianna: Mom, be Gaston.

Me: OK. Hi, I’m Gaston.

J: I’m 4 years old. I can talk, but I can’t walk.

M: Oh well… no one’s perfect.

J: But God made me perfect!

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Follow this journey on Julianna Yuri.

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6 Reasons Being a Single Special Needs Parent Rocks

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Being a single parent is a tough task on its own, but being a single parent to a child with complex medical issues just makes it even tougher. I’ve always felt sad I had to handle everything on my own — until I realized it just makes me even more badass! I’m OK being single for the rest of my life, and I kind of look forward to proving I can do as well as any two-income home with or without a child with special needs. My confidence level has taken me almost three years to reach, but it’s a wonderful feeling to be where I am today with just my son and me. I believe if I can do it as a young, single mom, anybody else can, too!

Here’s a list of why I think being a single parent to a child with special needs rocks:

1. I get to make all of the decisions.

In my situation with my son, he does not and has never had a “father” in his life. Luckily, that means I’m the only one who chooses what I believe to be right or wrong for my son. I get to chose the school, the medication, the daycare, the respite worker and the discipline style. Plus I can co-sleep with my son without any complaint.

2. There’s twice as much love.

My son is the biggest cuddler ever. So I get all the hugs, snuggles and sometimes kisses I want without having to share. (I know… I’m selfish.)

3. The one-parent-only policy for hospital rooms isn’t a problem.

In all the hospitals my son has been admitted into, they have a strict policy about only one parent being in the room with the child. Luckily, I can be the one with my son the entire time to comfort him.

4. I’ve learned how to become an advocate on my own.

I thought my son and I would be treated better if I had a husband with me. Luckily, I’ve learned how to get taken seriously, and I’m constantly praised by medical professionals for how well I do as a young, single mom, given my son’s complex medical problems. I feel like being Ben’s mom is what I was born to do.

5. I’ve learned how to juggle.

Not literally juggle, but you sure have to learn how to do things without any help. I can take him to all his therapists, specialists, get medical supplies, basically be my kid’s secretary and manager, and then work and go to school full time on top of it all. But just to bring my cockiness down, I will throw in that my house is only ever clean for as long as one day a week.

6. I do all of the heavy lifting.

Literally. I can lift my 50-pound kid without flinching. I can also fold and pack my sons wheelchair in the trunk about 10 seconds. I’ve seen people’s jaws drop when they see how quick I am. I have wicked arm muscles and win arm wrestling matches all the time.

I know this list will not resonate with every person who may read this. But if it does reach out to one person feeling down about being a single parent, I hope I’ve helped you see there is so much positivity, even in situations that feel hopeless!

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Lawsuit Filed Against Sheriff Accused of Handcuffing Kids With Disabilities

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On Monday, August 3,  the American Civil Liberties Union (ACLU) filed a federal lawsuit against a Kentucky police officer for handcuffing two children with disabilities, according to the ACLU website.

Kenton County Deputy Sheriff and school resource officer Kevin Sumner allegedly locked handcuffs around the small children’s biceps at a school in Covington, Kentucky. The ACLU claims the experience was both painful and traumatizing to the children.

The lawsuit asks the U.S. District Court for the Eastern District of Kentucky to declare officer Sumner’s actions to be unconstitutional and a violation of the Americans with Disabilities Act, according to the lawsuit. It claims that the allegedly illegal handcuffing was an unnecessary and excessive use of force.

The ACLU released a video showing an 8-year-old boy shackled and crying out in pain. The video description says that he was left in that position for 15 minutes and that he was restrained because of behavior related to attention deficit hyperactivity disorder (ADHD) and a history of trauma. An unnamed member of the school’s staff took the video.

See the video of the incident below: 

The incident took place in November and the boy, a third-grader, is identified only as S.R. The lawsuit alleges that another child, a 9-year-old girl identified as L.G., was restrained in a similar way on two separate occasions because of behavior related to ADHD and other special needs.

Shackling children is not OK. It is traumatizing, and in this case it is also illegal,” said Susan Mizner, disability counsel for the ACLU, in a statement on the ACLU website. “Using law enforcement to discipline students with disabilities only serves to traumatize children. It makes behavioral issues worse and interferes with the school’s role in developing appropriate educational and behavioral plans for them.”

The ACLU is joined in the suit by the The Children’s Law Center and a Cincinnati law firm called Dinsmore & Shohl. The complaint seeks to change the policies by the Kenton County Sheriff’s Office in addition to requiring training for school resource officers in dealing with young children and children with special needs. It also seeks an unspecified amount of monetary damages against Sumner.

For more information, visit the ACLU website.

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