Archive for the ‘ To The Max ’ Category

When Parents Wish They Never Had Their Child With Disability

Friday, October 24th, 2014

“While I do love my son, and am fiercely protective of him, I know our lives would have been happier and far less complicated if he had never been born. I do wish I’d had an abortion. I wish it every day.” Those are the shocking words I read this morning, in a Daily Mail article, said by Gillian Relf, 69, mom to Stephen, 47. The piece has gotten a lot of attention, as did another recent one by the same publication in which other parents of a child with disability also said they would have terminated their pregnancy.

Let’s set aside the fact that this is a newspaper that thrives on shocking people into reading it. These are still real sentiments coming from real people. I read them with both sadness and heavy disappointment about the message they were implicitly conveying to the masses: That kids and adults with disability are damaged, lesser human beings who can ruin people’s lives.

As the parent of a kid with cerebral palsy, I completely understand the struggle with accepting a child’s special needs. Many of us contend with that. Just this week, I was musing about the ghost of that other child—the one I expected to have. In general, though, I’ve come to a place where Max’s disability is a part of who he is. Not every parent of a kid with special needs feels that way, of course, or needs to. Mom Gillian Relf is from a different generation; I wonder if she’d think otherwise if she had the resources and social media support that parents of kids with special needs have these days.

Still, making a public proclamation that you wish you’d aborted your child with Down syndrome is unfortunate. It’s downright painful to those of us who are out there doing our best to get the world to accept and include our children, which is often an uphill battle. It’s a free world and of course, any parent has a right to speak her mind—but I can’t but help but feel disturbed when people set back progress the rest of us have made for helping the world welcome children with special needs.

From my other blog:

The ghost of the child you expected yours to be

An extra chromosome does not define people with Down syndrome: Love this video

The amazing two words a kid said about my son

 

Image of empty baby stroller via Shutterstock

 

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A Disney Princess With Down Syndrome: Now That Would Be Magical

Tuesday, October 21st, 2014

Delaney Skye, 15 months old, is fascinated by Disney princesses, as tots tend to be. Delaney has Down syndrome, and her mom decided it would be awesome for her daughter to see a princess who looks like her. So Keston Ott-Dahl started a petition on Care2.com, and it’s racked up more than 37,000 signatures from around the world so far.

“When I see her mesmerized by Disney princesses, it breaks my heart to know she has no role models like herself,” Ott-Dahl told the Los Angeles Daily News. Another goal she has in mind: to help people be more welcoming to kids like her little girl. As she noted in the petition,

“Disney does a great job of depicting right from wrong. It has long provided wonderful moral lessons that teach our children to be good people…. What wonderful lessons of diversity, compassion and acceptance Disney could teach our kids if they promoted disabled characters as heroes and heroines in their beloved movies!”

Ott-Dahl noted that the last Disney character to have a Down-like disability was in the Hunchback of Notre Dame, which came out 18 years ago. There’s also Dopey, in Snow White and the Seven Dwarfs, who does not verbally communicate (although his name sure doesn’t flatter people with speech challenges). Some say that Nemo, with his damaged fin, has a disability.

As a mom of a kid with cerebral palsy, I’ve wondered myself about a potential Disney character with foot braces. Last year, renditions by artist aleXsandro Palombo of Disney princesses who were limb-different, in wheelchairs and using crutches went viral. Ott-Dahl imagines that a Disney princess with Down syndrome would, she said, “talk a little differently” and “look different.”

And that would be a great thing.

From my other blog:

The amazing two words a kid said about my son with special needs

One extra chromosome does not define people with Down’s syndrome

On not letting your kid’s obsessions get to you

 

Image source: Care2.com

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What People Can’t Tell About Kids With Down Syndrome From Looks Alone

Thursday, October 16th, 2014

October is Down Syndrome Awareness Month, although as with any disability awareness month, awareness, inclusion and an all-around welcoming attitude should happen year round. I asked parents on social media who have kids with DS, along with family members, to share what they thought nobody can tell about their children with Down syndrome. These are the amazing responses:

“People don’t realize how smart kids with Down syndrome can be. Nathan has known the entire alphabet since he was two, and at four he knows uppercase and lowercase alphabet, colors, shapes and numbers to 20. He’s an excellent problem solver, and an expert at manipulation (especially with females)! His speech therapist recently told me that he’s so smart he’s figured out how to ‘play dumb’ so he can get away with more!”—Andi Sligh, Bringing the Sunshine

“They have no idea just now much light Dylan, 2, adds to our lives. They can’t see just how amazing his life already is, and how amazing it’s going to be. He’s pictured with his big brother Jackson, who has autism. They’re my superheroes!”—Toni M. 

“How much drive she gives me. This is my sister Amy, we are 18 years apart and our mother is about to turn 65. I have ESRD (kidney failure) but my responsibility to my sister keeps me strong, even when I feel like my illness is overwhelming me. She is my best friend and I live to make her happy.”—April F.

“He’s a great friend and big brother! He may not be able to talk but he has plenty to say! He has feeling, likes and dislikes just like anyone else! He’s also a huge Seahawks fan!”—Heidi F.

“Carly, my daughter with autism, has many friends with Down syndrome, three in particular that she’s closest to. They are all so different. One is quiet and easygoing, one is the class clown and the other one is the boss! They are the three musketeers but when Carly’s around, she’s never left out. They are sweet and kind and they don’t lose interest just because Carly doesn’t answer back all the time when they try to talk to her. They know the true meaning of inclusion!”—Marci R.

“He is paying attention to everything that is going on and watching everyone all the time. He knows when we are talking about him.”—Nechama K.

“How unique her personality is and how smart she is. She’s not interested in all this princess stuff. She declared yesterday, ‘I queen!’”—Tricia D. 

“How much he’s impacted so many lives in such a positive and amazing way.”—Kristy H.

“That she is just one of the gang when it comes to the family. She’s changed our whole perspective on life.”—Laura T.

“People can’t tell how much she loves drama—I mean the good kind of drama, acting in plays!”—Michelle Beausoleil Helferich, Big Blueberry Eyes

“They cannot tell that he is really The Flash in his everyday clothing! Honestly, that he is not always happy.”—Vesta R.

“That while she looks all sweet and innocent, she can be a stubborn little thing. Ellie is one spunky girl who loves to climb and dance.”—Anna. T

“That he has a hilarious sense of humor…owns my heart…makes life so much better! And he can work technology about a million times better than most adults!”—Ashley B.

“How strong he is. Both physically and mentally! At six he always amazes people with how strong he is when he’s fighting for something he does—or doesn’t—want. And he has overcome more obstacles than most people do in a lifetime yet still his spirit and joy for life shine through. I love this kid.”—Kristi D.

Life With Down Syndrome
Life With Down Syndrome
Life With Down Syndrome

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Broccoli Sprouts and Autism: The Latest Study

Wednesday, October 15th, 2014

This is a post in the weekly Autism Hopes series by Lisa Quinones-Fontanez, a mom who blogs  over at Atypical Familia.

Over the years, I’ve heard about many autism studies and theories. Some have made me laugh out loud,  others I completely agree with. But it seems as if every other week there is some new study. It’s getting tough to keep up.

This week’s latest study is all about broccoli sprouts and how it can help modify behaviors in autistic individuals. Well not broccoli sprouts exactly but Sulforaphane, the extract derived from broccoli sprouts. Sulforphane is also suggested to have an “anti-cancer effect.”

The study involved 40 boys and young men, ages 13 to 27, with moderate to severe autism. Of these, 29 were randomly selected to receive the supplement (50 to 150 µmol depending on weight). The others received a look-alike placebo, or “dummy” capsule. Neither the researchers nor the participants and their families knew who received the actual treatment until after the trial concluded. (Autism Speaks)

Over the 18 week study, nearly half responded to treatment.  ”Most of these individuals began showing improvements during the first four weeks and continued to improve during the rest of the treatment.” However it’s important to note that during the study, two individuals taking the Sulforaphane had seizures. While they had a history of seizures, it is unclear whether or not Sulforaphane caused them to have one during the trial.

When I shared this study on my Facebook page, I made a joke about it. Because by the headline it seemed a bit out there (and I hadn’t read the research). But one mom asked whether or not I would try it. Honestly, I don’t know. If it were a vitamin supplement – maybe. Someday. I’d need to see more research first. (I’m still trying to decide if I want to start Norrin  on medication for his ADHD.)

One thing that has me on the fence, is that Sulforaphane is known for cancer prevention and treatment. And I think it perpetuates the idea that autism is a disease in need of a cure. I am not interested in a cure for my kid.

I think these autism studies give parents false hope, because there are parents willing to try anything and everything to “fix” their kid. When they try something that works for some kids and not theirs, those feelings of loss and guilt return. I know because I’ve been there.

Research has shown that children who receive early intervention services will show significant improvement. Yet so many children go undiagnosed by three years old especially among minorities.

Autistic kids need more resources. Parents need more support especially as their children grow older. That is where I would like to see research money spent – on providing the resources and support our kids need to learn, thrive and live full lives.

How do you feel about this latest study?

And from my other blog:

Children with Autism: The Parents Perspective
Children with Autism: The Parents Perspective
Children with Autism: The Parents Perspective

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A Dad Runs A Triathlon With His Little Girl With Cerebral Palsy

Tuesday, October 14th, 2014

Months ago, I heard a wonderful story about an Atlanta family with a child who has cerebral palsy. The father, Pascal Gouteix, likes to run triathlons and wanted to take his three-year-old, Julia, with him. They had just moved into a new home, and the equipment was expensive. Their story has not one but two happy endings. Here, Pascal and his wife, Kelly—who blogs at Where There’s A Wheel, There’s A Way—share what happened.

So, I know there’s a special story behind how you first got the equipment—please share!

Pascal: For a while now, I was thinking about doing triathlons with Julia but did not know the right people nor had enough knowledge about what type of equipment to get. I found someone in Colorado with whom I connected. He does triathlons with special needs kids as well. He made some recommendations but this was all rather expensive. My wife is great at listening and remembering what I say. She answered an invitation to submit my story to a radio show named The Bert Show. When she found out we were going to be invited and was asked info about the equipment, she somehow found the contact info for the person in CO to get the info about the equipment. And that is exactly what The Bert Show/Fragile Kids Foundation provided us with. Such a blessing.

Kelly: I’m never the kind of person that randomly calls radio shows, so when I sent the email late on the Tuesday before Father’s Day, I was not expecting to hear from them. You could have knocked me over with a feather when their producer called me the next afternoon. Their host, Bert Weiss, has a nonprofit that takes chronic and terminally ill kids to Disney World every year, and I think this was just another way to show how these families are close to their hearts.

How did you train for the triathlon? 

Pascal: While at The Bert Show, a gentleman by the name of Brent Pease was invited to speak to me on the phone. He works for a company that provides equipment to triathletes and is one of them himself. He created a foundation in the name of his brother named Kyle (The Kyle Pease Foundation) that raises awareness of cerebral palsy and helps families like ours to help our members with CP to enjoy life through sport. He provided me with a lot of useful tips on how to train and use the equipment. I live in a neighborhood where there is a large swimming pool. I trained early mornings there, along with a good friend of mine who ended up doing the triathlon with us. For the bike and the run, I would do that in the evenings and weekends at the Silver Comet trail not far from our house.

What was Julia’s reaction to the training?

Pascal: She loved it. We found out that being outside, the wind and sun on her face, calms her down and makes her feel happy. We both laughed a lot.

Kelly: It was so neat to see how much they enjoyed their training together. Julia would immediately start smiling as soon as she was situated, because she knew she was in for some quality outdoor time. Pascal tells me that she giggles a lot when he starts huffing and puffing.

What most surprised you about doing the triathlon with Julia?

Pascal: Not necessarily the event itself. But feeling like I was part of a family. The Kyle Pease foundation is composed of families like ours, with special needs children. The wonderful feeling of being understood and cheered on made all of us feel very good that day.

Kelly: By far, the connections we have made with like-minded families in the Atlanta area has been the best part of all of this. It’s so nice to meet other families living with hope instead of fear, and it has been amazing for us to get to spend lots of time with adults who have CP and are living happy, productive lives.

What were you hoping to achieve in doing the triathlon?

Pascal: Make my daughter happy. Also, show our other two children (Emilie, 11, and Jeremy, 9) that doing a sport activity can only be beneficial, and that we are not the only ones living with someone with needs like Julia. These past years have been difficult especially for them since my wife and I have been so focused on Julia. It was good to see them smile, and engage with the other families, creating ties. This was my first triathlon with Julia of a long list, I hope.

What was the most challenging part of the triathlon?

Pascal: The bike ride. Especially because that is the part for which I did the least amount of training. There were a few rough hills and I could feel the weight of Julia and her trailer. I motivated myself by reminding myself how she fought for her life the first few weeks after she was born.

Kelly: As a mother, I was terrified when he took her out for the swim. I was convinced the boat was going to tip over or something. Kyle Pease told me his mom had an identical reaction the first time he raced with his brother.

How did people cheer you on?

Pascal: People were very encouraging, congratulating me for what I was doing. I was particularly touched by a woman who had a beautiful smile and tears while looking at us before we started the swim portion of the event.

Kelly: We had quite a few random strangers take pictures of our family or of Pascal and Julia. There were multiple families from the Kyle Pease Foundation competing that day, and it was fun to see how everyone encouraged each other!

What is your greatest hope for Julia?

Pascal: That someday she can see us, what we look like, our smiles. In addition to CP, she has cortical visual impairment. Mostly I hope that she has a happy and rich life, no matter how physically challenged she may be.

Special needs families: Not so different from other families

Cerebral Palsy: Challenges and Triumphs
Cerebral Palsy: Challenges and Triumphs
Cerebral Palsy: Challenges and Triumphs

Images courtesy of the Gouteix family

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