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.
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.
The web has been buzzing over a vile incident involving a 15-year-old with autism in Bay Village, Ohio. A group of teens asked him over to their house, purportedly to participate in the ALS Ice Bucket Challenge geared toward raising money for the disease. Instead, as the teen stood in a driveway in his underwear, a bucket full of urine, fecal and spit was dumped onto him from the roof. The boy’s mother, Diane, discovered a video of what happened on her son’s cell phone. Police say that the group of teens who committed it could face delinquency chargers. The parents released the video, hoping to raise awareness about bullying.
People have been justifiably horrified, with many speaking out against bullying. Last Friday evening, his community held a rally with people holding signs such as “No room for hate.” Comedian Drew Carey has offered $10,000 in reward money to help find out who was behind the incident. All over social media, people have denounced what happened.
As horrific as this assault was for this teen and his family, as extra-upsetting as it is to those of us who have kids with special needs, the outpouring of support has been heartening. Still, it’s sad that it takes a shocking incident like this for people to spread the word that people with special needs deserve respect. If that were to occur regularly, though, events like this could be avoided. Not entirely, of course, because there will always be rotten apples. But if kids were raised to treat peers with special needs as their equals, children with autism, Down syndrome, cerebral palsy and other special needs would be less subject to derision, exclusion and bullying.
This isn’t just about making sure kids with special needs are included in school’s anti-bullying messages; this is about parents talking with their kids about children and adults with special needs from a young age, so children grow up with that equality mindset.
Here’s a challenge for parents to take. It involves no icy water, just a willingness to help kids understand the diversity of people that exist in this world, and to talk about it with them.
• Explain to your child how everyone has differences, and that some kids and adults have ones that are more visible—and that different is OK.
• Point out even though a child may act, speak, walk or talk in a non-typical way, in many ways they are like other children: ones who like to play, laugh, eat ice-cream, read bedtime stories…you know. That they feel happy and sad, just like they do. That they are kids.
• Help make kids aware of the ability in disability, and that everyone has their own kind of talents. If you do not have any kids or adults with special needs in your circle, google images of Special Olympics athletes—a good conversation starter. Or poke around blogs by parents of kids with special needs to help your child get a sense of what our children can do.
• Discourage the use of the words “retard” and “retarded,” which perpetuate negative stereotypes of people with disability. (If you don’t get what’s so wrong with them, watch this video.)
• Make this an ongoing conversation, just as parents regularly talk with kids throughout childhood about race, ethics and other all-important topics. Encourage them to ask you questions.
• Bridge the gap that can exist at parks, playgrounds, parties, when kids may be hesitant to approach a child with special needs. Encourage interaction. Tell them to just say “Hi,” as they would with any child.
I hope you’ll take this challenge. It’s not just for the sake of kids like my son—it’s for the benefit of your child, too. Teach your child to welcome and respect people with special needs and you will raise a better human being.
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.
Back to school is always a hectic time of year (understatement alert). But when you have a kid with special needs it can be even more of a challenge, especially if you have a child who doesn’t like changes in routine. I’ve found that getting Max a new backpack or some other new school item early in August helps; it gets him psyched, and it comforts him to know he’s prepared. I asked Facebook parents of kids with special needs what makes the return to school go more smoothly for their kids and them. Their strategies:
• Get back into a routine. ”I start the routine two weeks prior, bedtime and morning wake-up. I let him pick out his new lunch box and pack up his school supplies and pick his first day of school outfit. I drive him to school to re-introduce it for familiarity.”—Amy S.
• Keep it visual. ”We do a monthly schedule color-coordinated for each of the four kids, and now a color for the dog! Kids and I like to see what’s ahead and what we get to look forward to.”—Nancy B.
• Two words: “Online shopping!”—Maria K.
• Build excitement. “A giant wall calendar shouts the term ‘starting day’ and conversation touches on the new teachers and responsibilities.”—Dave W.
• Get some teacher scoop. “It helps to have a hint of what the coming year will bring. Some inkling of who this teacher is, into whose hands I’m about to place my child’s well-being and education…. I’m in a state of horror as I know none of that yet!”—Barbara H.
• Practice homework to build confidence. “We do some ‘school’ work from workbooks every day to reinforce what he already knows!”—Amy S.
• Know that it will get better. ”My son actually does a lot better during the school year. He gets bored at home, and begins cycling through his preferred activities at a much faster rate. But adjusting to change is never easy for him. I expect to see increased frustration and aggression during the first few weeks of school. Knowing that situation will improve as he becomes more comfortable in school makes it easier to deal with a change in behavior.”–Regan B.