Posts Tagged ‘ special needs parenting ’

A Happy Ending For The Sick Baby Facebook Dissed

Tuesday, September 23rd, 2014

Yesterday, a miracle happened: Hudson Bond, 9 weeks old, received a new heart. He and his parents have been through a lot in his short life—including some emotional turmoil wrought by Facebook.

When Hudson was born in July with cardiomyopathy, a type of heart disease, doctors told his parents that he’d need a transplant. So his father, Kevin Bond, did what many parents of sick kids do: He created a Facebook page. Kevin hoped that Hudson’s Heart would spread the word about his son’s need for a new heart and raise funds for expenses. One day, he decided to pay Facebook $20 to “boost” a photo of his son lying in the Pediatric Cardiac ICU at Duke Children’s Hospital. Only Facebook rejected the photo.

As Bond wrote on Hudson’s Facebook page, “Facebook thinks my son is offensive.” He went on to share the message he’d received: “Reason(s): Your ad wasn’t approved because the image or video thumbnail is scary, gory, or sensational and evokes a negative response. Images including accidents, car crashes, dead and dismembered bodies, ghosts, zombies, ghouls, and vampires are not allowed.”

Bond was shocked. Attempts to appeal the decision didn’t work, he said. “Facebook, you should be ashamed of yourself,” he wrote. “Of all the garbage you endlessly pedal all over the Internet, a picture of my son is where you draw the line? Disgusting.”

As word began to spread, a Facebook spokesperson issued a seemingly heartless statement: “This was a mistake on our part, and the ad has been re-approved. We apologize for any inconvenience this caused the family.”

The response wasn’t enough for Kevin Bond. As he said, “Inconvenience was never an issue. Having my beautiful son compared to dismembered bodies, vampires, zombies, etc. hurt me, and my family.” Facebook eventually called and explained that an “automated system” blocked the image, then offered $10,000 in free ads.

Baby Hudson isn’t out of the woods yet; doctors are monitoring him to make sure his new heart is working well, and that no complications set in. But he is a lucky kid. As Kevin Wrote yesterday, “He’s a brave little boy, with a brave new hrart, from a brave family suffering an unspeakable loss. From our family to yours, wherever you are, we love you. Please join us in praying for comfort, light and healing.”

Despite Facebook’s major gaff, ultimately social media has done good: People have contributed $141,960 to date on Hudson’s Children’s Organ Transplant Association page alone, plus additional money through other fundraisers. The family plans to donate any extra money to families of children in need of organ transplants.

From my other blog:

A kid for just a little longer: The joys of parenting children with special needs

The best bike ride of my son’s life

Exactly how to deal if you think your kid has lice

 

Images: Facebook, Hudson’s Heart

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Autism and Birthdays: 5 Ways Elf on the Shelf Can Help

Wednesday, September 17th, 2014

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

We adopted “Elfie” two Christmas’ ago. Our Elf on the Shelf really helped Norrin understand the magic of Christmas. Norrin knows it’s September and he’s already started giving me his Christmas list. I love that Elf on the Shelf has been a part of his understanding of the holiday season.

When I heard about Elf on the Shelf: A Birthday Tradition – I knew it was something I wanted to do with Norrin.

Tomorrow is actually my birthday. When I was talking to Norrin about it he immediately started reciting his birthday wish list. I explained to him that on my birthday, I get presents – not him.

Norrin will be nine in January and birthdays have always been tricky for us. We haven’t had a birthday party since he turned three. It’s easier to celebrate in school. And January is always a hard month to plan for since the weather in New York can be unpredictable. But we still want his birthday to be special and build anticipation to the day. I know Elf on the Shelf: A Birthday Tradition will help!

Now I know some parents are hesitant about Elf on the Shelf and feel the Pinterest pressure. But Birthday Elf is super easy and fun.

The Elf on the Shelf®: A Birthday Tradition tells the little-known story of how Santa’s finest helpers celebrate birthdays at the North Pole—and how you can invite your scout elf to share that tradition with YOU! Each kit includes special instructions for inviting your scout elf for a birthday visit, and a festive birthday outfit for your scout elf to slip into before the big day! Also available—the Birthday Countdown & Game and the Birthday Chair Decoration Kit.

5 ways Elf on the Shelf: A Birthday Tradition Can Help Your Child With Autism Feel the Birthday Magic

Build Anticipation. Unlike the holiday season, your Elf appears only on the day of your child’s birthday. You can use the Birthday Countdown & Game (or any other calendar) to count down the days until your child’s birthday and their Elf arrives. It gives kids something extra to look forward to.

Understand Birthdays. Many kids – including my own – have difficulty understanding that everyone has their own birthday. If you have more than one child in the home, the Elf – along with the Birthday Countdown & Game – can be your family’s way of distinguishing birthdays.

Sparks Imagination. Imaginative play doesn’t come naturally to Norrin. But he is getting so much better! Still birthdays can be such an abstract concept for him to understand.  We’ll read the book, talk about Elfee and birthdays. It all helps to connect the dots.

Communication & Storytelling. While counting down, talk about the days of week, talk about the months and other family member birthdays. Talk about your pregnancy and how excited you were the days leading up to your child’s birth. Talk to them about the day they were born – even if you think they won’t understand. Let them hear the story.

Feel Special on Their Day. I love the idea of the Birthday Chair Decorating Kit along with the Elf because it really makes a kid feel special. We don’t have big birthday parties for Norrin and I’m not the mom to go crazy with decorations. The Birthday Chair Decorating Kit is easy and fun. It’ll be nice that we can do something a little extra to celebrate.    

Catch up with last week’s post: Prompting Conversation and Communication With An Autistic Child

And from my other blog:

 

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Toilet Training A Child With Special Needs: Parents’ Top Tricks

Tuesday, September 16th, 2014

I recently found out about Touchless Toilet Technology from Kohler—a way to flush just by holding a hand over the tank lid, where a sensor has been placed. It’s really cool, and it seems like it would have been an excellent potty tool when I was training Max. Back then, both of us needed all the motivation and temptation that we could get. Max was day trained at school for a long time before he finally became so at home, at age 9. One key thing I learned: Parents have to be just as ready as the kids are. Potty-training a kid with special needs requires dedication, and if you’re not diligent about whatever tactic you try, your child won’t get into the groove.

I asked special needs parents on social media for their best tricks and tactics for potty training a child with special needs. May the flush be with you!

ENCOURAGEMENT

“What finally worked was using star stickers on a chart. Nicholas got to put one on every time he went. It seemed to really work for him that way (even though I still had to more or less force him onto the seat each time).”—Sarah L.

“The Clean Pants Check. We did the usual sitting on the potty 30 minutes after eating or drinking, but instead of checking every 30 minutes thereafter to see if he was ‘dirty,’ we checked to see if he was CLEAN, then rewarded him. He is autistic and was not potty-trained at 4.5 years old. It only took one month with this method.”—Peggy M.

“Lukas is autistic. We did lots of modeling and letting him see us go. We are not a shy family. No pressure. A couple of months after turning four, he just went in and did it. That was it.”—Rebecca D.

“I put a Pull-Up on over a pair of panties. She felt the wetness, which ultimately motivated her not to go in her pants, and I had the leak protection of a Pull-Up.”—Crystal S.

“My son was very stubborn. Making him responsible helped. He had to get the Pull-Ups from the drawer and throw them away. I bought toddler wipes so he could more easily clean himself. Eventually I think it just came down to…it was time. He was 9.”—Angela S.

“For nighttime training, two words: alarm underwear!“—Melissa M.

“For my grandson, I picked a weekend, I talked about it with him and told him when he got home from school on Friday, he would be able to wear Big Boy underwear that he picked out the week prior (Buzz Lightyear)…. The two days of potty training gave him the ability to understand what holding it meant, and he had had to tell somebody. He has had a few accidents, but we never went back to diapers. He will be 9 tomorrow and completely potty trained. They said he would never accomplish being potty trained…. HA!”—Barbara D.

EDUCATION

“Avakid’s app See Me Go Potty. Seriously, worked like a charm.”—Faye C.

“We used potty-training DVDs and huge celebrations: woo-hoos, dancing, making a complete jack@$$ of ourselves.”—Devon B.

“Learning to point to icon on his speech app led to being willing to sign/verbalize needing to go. Didn’t happen until age 12 after trying many other ways.”—Peggy R.

“Repetition. We just did it over and over and over and over (you get it) until it stuck. Oh, and Reece’s Pieces.”—Patty H.

ENTERTAINMENT

“I bought those little tablets that you throw in the water of the toilet, they come in all different colors. I guess it’s kind of like target practice: Once they pee on the little tablet it starts to dissolve nd turn the toilet water whatever color the tablet is.”—Stacy S.

A giraffe puppet trained mine! They wouldn’t do it for me, but they’d do it for the puppet.”—Kristen R.

“For my daughter, I painted her toenails while she sat on the potty. She was fascinated by watching me do it and it would keep her still and help her stay put for a few minutes.”—Rosie R.

“There is this funny song about poop in Brazil, with a video clip and everything. I used to sing it for my son, making voices and faces, while he tried to do number 2. It worked really well. This is the link. Yeah, it’s a poop singing!”—Andrea B.

REWARDS/BRIBERY!

“He wanted a doctor kit so I put a brand new one on top of the entertainment center out of reach and said he had to use the potty and get out of diapers to have it. Every time he asked for it I just said, ‘You know what you need to do.’ I didn’t push him to use the potty. One day he decided he wanted it enough and did it. He was almost 5.”—Jennifer R.

“Had a treat box in the bathroom filled with cheap toys my son loves from Walmart and Big Lots! When he did his thing, he would get to choose one.”—Kay T.

“I used Daniel’s favorite, M&M’s, plus I kept a potty chair in the family room for emergencies!”—April G.

“A Lalaloopsy mini doll as a reward for poop on the potty. I bought an eight-pack for $44. Best money I ever spent. After two years of potty training for poop, this finally seemed to work at the age of 6.”—Christie C.

“I told my son with Sensory Processing Disorder that we couldn’t go to Disney World the following week, because Mickey didn’t let kids his age who couldn’t use the potty into Disney World. I only told him this because his OT and I agreed he was not doing it purely out of stubbornness, at that point. I wish I had done it sooner because 48 hours later, he was completely day-trained.”—KLW

CUE: LET IT GO

“Nothing worked. And we tried EVERYTHING! He just had to be ready. We finally just gave up, told him he could stop trying and wear Pull-Ups as long as he needed to. He self-trained the next day. He was 4 and we’d been trying for two years. I think just stepping back and taking the pressure off, letting him set the agenda and be in control of the process was key for him. He has Asperger’s.”—Angela C.

“Wine. #formom.”—Katrina M.

From my other blog:

Kamikaze potty training

A happy ending to the toilet-training saga 

Potty training boot camp
Image of child looking at toilet via Shutterstock 

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Prompting Conversation And Communication With An Autistic Child

Thursday, August 28th, 2014

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

My son, Norrin, has been working with a speech therapist for the last six years – ever since his autism diagnosis. At the time he was diagnosed, he had no language or communication skills. Recently, Norrin saw a picture of me that prompted him to ask me 5 appropriate questions in a row. I was beyond excited! Since then, I’ve been finding ways to build on his conversation skills.

Linda M. Reinert, speech language pathologist and author of Talking Is Hard for Me! Encouraging Communication in Children with Speech-Language Difficulties, encourages parents, teachers and caregivers to “expect communication.”

Tempting as it might be, stop trying to read the child’s mind. Consider what the next level of communication might be and expect that…expect the child to respond in a way that just a bit more difficult than [his or] her current means of communication.

I always try to keep that in mind when I talk to Norrin. He’s been much more expressive and so now I expect a little more each time we talk.

Here are my 6 simple rules for prompting conversation with my son:

Set the mood. Make sure your child is relaxed and ready to talk. Turn off all distractions so they can focus on you. And give yourself at least 10 – 15 minutes to commit to giving them your full attention. Go for a walk in the neighborhood and talk about what you see. Sit at the table while they are having an afternoon snack. I like talking to Norrin right before bed. He’s had his bath, he’s winding down and open to talking.

Keep it simple and specific. Don’t go into a whole monologue and/or fire off a bunch of questions. Use simple language and ask them one specific question at a time.

Follow up. Conversations are all about the follow up question. Build your conversation based on the answers your child provides.

Be patient and wait for response. Some kids need a few minutes to digest the question and think about the answer. So wait a minute or two.

Repeat and/or rephrase the question. If you’ve asked a question and too much time has passed. Ask again. If you have to ask a third time, rephrase the question. If they need help, provide two choices or use pictures and have them point.

Look for inspiration. There is inspiration everywhere. Show them a picture of something fun you did together and ask your child about it. Sometimes I’ll point out something as we’re walking around the neighborhood and ask him to tell me about the specific object.

It really doesn’t matter what you talk to your child about. The important thing is to take the time to talk to your child and get them into a back and forth dialogue. And with each conversation, always expect a little bit more.

And from my other blog:

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Daycare For Kids With Special Needs: Yes, Please

Tuesday, August 26th, 2014

Among the many things I wished for when Max was little: a daycare that specialized in kids with special needs. We had a regular sitter, but when she was on vacation or called in sick, leaving Max at a regular daycare was stressful. Sometimes, my husband and I ended up taking off days from work.

I was so thrilled to read about A Place For Grace in Saginaw, Michigan, a daycare center for kids with special needs that opens September 2. Its founder: a mother of a child with special needs. As Jenny Dumont recalls of her struggles finding daycare for her daughter Emma Grace, now 9, who has intellectual disability, “She was having meltdowns four times in one week and I got called in to pick her up and when I got in the caregiver was doing the best she knew how. I got really frustrated and thought, Why isn’t there a place for children like Emma?”

Jenny Dumont and daughter Emma Grace

A Place For Grace has teachers trained in special education, along with a sensory room and toys  for kids with special needs. It will ofter preschool for children ages 3, 4 and 5 (who missed the school cut-off) and aftercare for kids ages 5 to 16. The goal is to offer full-day childcare for school breaks and special days by Summer 2015, including therapies in accordance with children’s IEPs.

If you Google “special needs daycare center” in your area or state, some might crop up—key word being “might.”  This country is sadly lacking in daycare options for children with special needs. It’s astounding, though not surprising, that this one was started by a parent of a kid with special needs. Parents like us often have more than our hands full and yet, we best know just how needed services like this are.

Also see Parent.com’s Day Care and Babies With Special Needs

 

From my other blog:

On letting your child with special needs do things for himself 

My kid with special needs understands you so don’t ask me, ask him

That sad you feel when you think about your pregnancy

 

Image source: Screen grab of center, WNEM video; Emma Grace and Jenny via GoFundMe

 

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