Allow children who are overwhelmed by sights and sounds of shopping to stay home. Allow kids to have a pajama and movie night while you’re shopping.
If a child must attend the shopping trip, schedule downtime or breaks for children to de-sensitize. This can be located in the car with some crunchy snacks, a weighted blanket, and some calming music.
Encourage children to make a list of preferred toys well in advance. Give family lists of toys to choose from. I even purchase the toys my children will enjoy and provide them to my local family members ahead of time. We sometimes have a “trunk sale” and everyone chooses which give they will buy and wrap for my boys.
Go at a time of day when children are well-rested and not hungry. Do not rush and arrive early.
Write a letter or speak to the photographer ahead of time. Most studios will schedule extra time for children who have special needs. Request a photographer who is patient. If possible, schedule a photographer to visit your family outside of the studio. We have found that this may be a more affordable option than a studio because of low-overhead costs.
Be flexible. Consider that “fancy” clothes are often scratchy, have tags, and may contain textures that aren’t familiar to children. Permit the child to wear comfortable versions of colors that you’d like the family portrait to have.
Visits with Santa
If children do agree to see Santa, create a social story with pictures of Santa, including his beard, velvet/soft red suit, and the setting in which Santa will be located. Go to the location prior to the visit and watch other children. Practice, practice, practice!
Create a “safe-zone” to which the child can go whenever they feel overwhelmed. Set a password or sign that your child can use to excuse himself. Place a bean bag, calming music, a heavy blanket, and favorite hand fidget toy in the area. Practice ahead of time.
Create a letter to family members prior to family gatherings to explain your child’s wonderful progress toward goals and suggestions for conversation topics. For example: “Joshua’s had a wonderful year in therapy. He’s learned how to tie his shoes, take one turn during conversations, and how to write in cursive. Joshua likes Angry Birds. Here’s a link to the Angry Birds’ website if you’d like more information. Please know that even though he’s not looking directly into your eyes, he IS listening to you and loves you!”
At mealtime, make sure to serve a preferred food so that children who have feeding difficulties can successfully participate.
Give kids a job to do so that they will have a sense of belonging and success. Even something such as helping to create place markers for seating or setting the table can give kids a feeling of accomplishment.
Remember that heavy work is generally calming. Include activities such as moving chairs, picking up and placing dirty clothes into a basket and carrying it to the laundry room, or vacuuming are great ways to encourage children to help to prepare for the party.
Plan an “out” or an escape plan. Even a short visit that is successful can create memories that last a lifetime!
The Holidays are meant to be fun. Enjoy them with your family!
“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.
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.
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)
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.
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.
If you have a child with special needs, you know what an uphill battle it can be getting people see the ability in disability. Now imagine that your child is an adult—and the challenges both of you will face convincing people to hire him. I don’t dwell on this too much, since Max is still a kid, but it’s there in the back of my mind. The stats aren’t very reassuring: About 85 percent of adults with developmental disabilities did not have a paid job in the community between 2012 to 2013, per the most recent figures from National Core Indicators.
Aiming to change all that: the I’m In To Hire campaign that seeks to raise awareness about the lack of employment for people with intellectual and developmental disabilities—and get companies to take a pledge to support them. The campaign is spearheaded by Best Buddies International Founder Anthony K. Shriver and billionaire business magnate Carlos Slim. “People with IDD are incredibly talented, loyal, hard-working and driven individuals who have the ability to contribute to the workplace but unfortunately they are disproportionately unemployed in our nation and beyond,” said Shriver. “The impact individuals with IDD have made on our society is beyond exceptional and the workplace should be no different.”
Employers may be further convinced by the findings of a 2014 report, Employing People with Intellectual and Developmental Disabilities, done by the Institute for Corporate Productivity. Researchers surveyed major organizations who currently employ people with IDD. Their findings:
• 57% reported the addition of highly motivated employees who are good talent matches
• 43% said it produces measureable and observable business benefits
• 47% reported an inclusive culture attractive to talent pool
• 60% said it supports their diversity and inclusion strategy
Employers can pledge their support here, and Best Buddies will follow up to facilitate the hiring. You can show your support by tweeting or Facebook-posting one of these messages:
It’s more than the right thing to do. See the business benefits of employing people with intellectual and developmental disabilities: bit.ly/ImInToHire
I see people with special needs as skilled and employable and #ImInToHire for an inclusive workplace. RT to join me! bit.ly/ImInToHire
People with w/ intellectual and developmental disabilities build fantastic friendships and productive businesses. #ImInToHire, are you?
Our kids may be years away from job interviews and collecting paychecks, but we need to support initiatives like this for the sake of adults with disabilities and the adults our children will someday be. But it’s also an initiative that can benefit our children now. Anything that helps people better understand that people with special needs are capable brings us that much closer to a world that accepts and respects our kids.
By now, you’ve probably heard about the recent Kanye West incident. On tour in Australia, he asked his audience to stand up—unless, he said, “You got a handicap pass and you get special parking and s**t.” When a couple of people in the audience didn’t get up, he singled them out until it was confirmed that they did, indeed, have disabilities and could not stand up and dance. Then the concert went on.
Much social media outrage ensued. Disability rights groups in Australia demanded an apology. Kanye’s response: He played the victim. “I’m a married Christian man with a family,” he proclaimed to an audience. “At my concerts, I make sure everybody has good of a time as possible, so all this demonizing me it ain’t going to work after a while.”
Not surprisingly, wife Kim Kardashian had an equally weak defense. She posted a video of his performance on Instagram and wrote, “What an amazing Australian tour! Its frustrating that something so awesome could be clouded by lies in the media. Kanye never asked anyone in a wheel chair to stand up & the audience videos show that. He asked for everyone to stand up & dance UNLESS they were in a wheel chair. #JustWantedEveryoneToHaveAFunNight #TheMediaTwistsThings”
This is hardly about Kanye mistakingly calling out people with disabilities in the audience. And clearly, this isn’t about some well-intentioned singer getting bashed for no reason. It’s about him publicly leaving out people with disabilities. Think about it: How would any one of us feel if we were one of thousands in an audience and everyone was asked to engage except us? Couldn’t he have at least said, “And if getting up’s not your thing, wave your hands in the air” or something like that?
Kanye and Kim are not exactly models of empathy and goodness, but still, their mindsets aren’t uncommon. I’ve seen this as the mom of a kid with cerebral palsy. Forget about people refusing to accommodate Max—they just don’t think to include him, whether it’s kids playing a game at a party or on the playground. It’s often up to me as his mom to pave the road for him. I am always standing by, but I ache for this sort of inclusion to happen naturally.
One good thing to come out of the Kanye kerfuffle: It’s getting people talking about how we treat people with disabilities.