Kindergartner Claire Koch of Clearwater, Florida, wanted her mom and dad to fully enjoy her holiday concert. So she did one thing: She signed it for them. Both her parents are deaf. The video her mom, Lori, posted on YouTube has gone viral worldwide.
The signing wasn’t planned; Claire, 5, just decided to do it. “We don’t use Claire to interpret for us—she did it because that’s how she communicates with us,” says Lori. She uploaded the video on the heels of the Nelson Mandela funeral scandal, in which a so-called deaf “interpreter” signed gibberish while standing with global leaders. (Yesterday, word came out that he’d been admitted to a psychiatric ward.)
“Claire’s video put a positive highlight on a bad experience,” Lori says. Marlee Matlin retweeted it with the words, “This is too cute. Can you spot the child who has deaf parents?”
Claire’s become somewhat of a celebrity at her school. “Some fifth-graders came up to her and introduced themselves by finger-spelling their names in sign language,” says Lori. “She was really inspired by that.”
This is a post in the weekly Autism Hopes series by Lisa Quinones-Fontanez, a mom who blogs over at AutismWonderland.
Chances are if you invited me or my kid to a party, I’ve declined your invitation. It’s not that we don’t like parties, cake or good company, it’s just that parties are hard – especially holiday parties. My son, Norrin, has autism and parties are sensory overload for him. He’s great one on one, but put him in a room with more than two kids and he’s off in a corner by himself. As for me? I am not the mom who can chat while glancing over at my kid. I am right beside him, the entire time. So when it’s me and Norrin at a party, it’s me and Norrin at a party.
Yesterday was my department holiday party. Some years I take Norrin. Some years I don’t. I wasn’t planning on taking him this year but since it snowed and since his school was cancelled, I felt like I had no choice but to take him. I’ve been at the same company for almost ten years. He’s quite familiar with my office and coworkers. But the holiday party is a different atmosphere. There are spouses and children, music and movies, cakes, candy and balloons. I love my coworkers and they are really good with Norrin. But we still had our challenges and I left with mixed emotions.
Earlier this week, I read an article about including kids with autism in holiday parties. The author, Kathleen O’Grady, made some really great suggestions including how to start a conversation. O’Grady suggested that conversation be prompted with a statement rather than a question. Questions “can be like an exam for some children with autism. If they fail the first question, the conversation is over before it starts.”
The two questions that confuse Norrin the most are: How are you and How old are you? When asked over and over again in an overwhelming situation (like a party), he shuts downs and stops talking. But if you talk to him about what he’s drawing or what he’s looking at – he’s more likely to engage in a conversation.
Yesterday was a learning experience for me and these are The Lessons I Learned After Taking My Autistic Son to a Holiday Party:
Arrive early. Most people like arrive fashionably late for parties. Not me, I like arriving right on time when I’m with Norrin. It allows us the time to familiarize ourself with the layout and the opportunity for Norrin to get comfortable in a new environment. Norrin was the first child at the department holiday party, he got to have his party experience at his own pace without a crowd of kids. By the time all the kids arrived and it became too much, I didn’t feel too bad about leaving before the party ended – Norrin had his fun.
Don’t be scared to ask for accommodations. My department had transformed a conference room into a “Gingerbread” craft room for the kids. Inside they played the Frosty the Snowman movie. Norrin is terrified of Frosty. When I tried to get him into the room, he threw himself on the floor. I didn’t want to ask them to turn off the movie for Norrin’s sake so I had to run into the room, grab a gingerbread man and run back out. Later, when my coworkers asked if Norrin enjoyed the craft room, I explained that he didn’t go in because he was scared. Everyone I told this to, said I should have asked for the movie to be turned off while Norrin was in the room. Next year, if Norrin is still scared, I’ll ask.
Be prepared. Take an extra change of clothes and underwear, just in case. Norrin will be eight next month and he’s fully potty trained during the day. But when he’s excited or over stimulated, he rushes through things. I’ll leave it that, you get the point.
Find a quiet area. Parties can be overwhelming for almost everyone. Find a quiet space to rest for a few moments. When things got to be too much, we returned to my desk where Norrin could sit and play on his iPad for a few minutes before returning to the party.
Put things in perspective. Parties are tough for several reasons. And being around “typical” kids, is one of them – at least for me. Norrin is an only child, autism is all I know. Most days it’s easy to forget. But when I’m around typical kids, I’m reminded of how different Norrin is. I’d be lying if I said it didn’t hurt. I watched as the other boys his age, formed friendships with ease, running reckless around the office. Norrin stayed by my side the whole time.
Norrin may not have ran around with the other boys, but he was gentle with the little ones and was able to share. Norrin didn’t go into the Gingerbread room but he sat still to have his face painted (something he refused to do a few years ago). And many of coworkers talked about how well behaved Norrin was, how big he’d gotten, how much he was talking. They recognized the progress he’s made. And I recognized it too.
Keep trying. Parties are hard for us. But it’ll never get easier if we constantly decline invitations. Like everything else in our lives – parties take practice.
Do you take your kids to parties? How do you manage? Would love to hear your suggestions!
These are some descriptions that regularly come up in my Google feed:
“Cerebral palsy sufferer”
“She suffers from Down syndrome”
“Cerebral palsy victim”
Before I had a kid with special needs, I would have read right over the words. Now that I have Max, who has cerebral palsy, they make me cringe. Words like “victim” and “sufferer” depict disability in a negative way, making it seem tragic for a person to have them. These are words that make you feel sorry for kids like my son, which is a shame because what he needs is parity, not pity.
I have gotten flack for speaking out against the word “retard,” a word that’s become a slur. I am sure people will say I’m being uptight and overly p.c., too, for pointing out how this wording victimizes those with disabilities. But words matter, especially when kids grow up hearing adults use them. Words shape our perceptions of people with disabilities, and how welcome we make them feel in this world.
The other day, a guy emailed me about a group he’s involved with that pairs athletes with disabilities and ones without them (described as “able-bodied”) for endurance events. I pointed out to him that able-bodied is a disparaging choice of words. His response was to reassure me that even though the wording may “appear as a negative” they meant nothing but “the most positive things” for all involved. I had no question about that—I just didn’t understand what the big deal is to change the wording.
My son, and kids like him, could use all the positive reinforcement they can get in this world. At times, it’s hard enough for them to fit in. I think I speak for many parents when I say I’d sure appreciate people—especially the media—using non-loaded wording to describe disabilities.
Instead of “he suffers from cerebral palsy” or “he’s a cerebral palsy sufferer,” just say “he has cerebral palsy.”
Instead of “wheelchair bound,” try “wheelchair user.”
Instead of “able-bodied” or “normal” go with “non-disabled person.”
This is a post in the weekly Autism Hopes series by Lisa Quinones-Fontanez, a mom who blogs over at AutismWonderland.
Ever since my seven-year-old son, Norrin, was diagnosed with autism, we’ve had an occupational therapist in our lives. They’ve helped us with everything from handwriting to buttoning clothes to riding a bike. Norrin has had occupational therapy in our home, at school and at a sensory gym. Sensory integration has always been a part of his occupational therapy sessions. And Norrin’s therapists have always suggested we follow a “sensory diet.”
Sensory Integration Disorder is considered a neurological disorder that results from the brain’s inability to integrate certain information received from the body’s five basic sensory systems. These sensory systems are responsible for detecting sights, sounds, smell, tastes, temperatures, pain, and the position and movements of the body.
I came across a recent article on Disability Scoop about, “a study published in the Journal of Autism and Developmental Disorders suggests that [sensory integration therapy] can reap meaningful gains [for kids with autism] in significantly less time than the 40 hours per week often recommended for traditional behavior therapy.”
I’ve had some education professionals dismiss Norrin’s need for occupational therapy. Once a child enters the public school system, the more difficult it is to retain related services. And many public schools (at least in New York City) do not have rooms dedicated for occupational therapy or OT equipment. Once a friend (who has a pretty high position at the NYC Department of Education) said that occupational therapy didn’t academically help kids with autism, it just made them a more ‘well-rounded person.’
Roseann Schaaf (occupational therapist and neuroscientist who conducted the study) said, “By changing how sensations are processed and integrated by the brain we help children with autism make better sense of the information they receive and therefore use it to better to participate in everyday tasks.”
J.J. Hart, a three-year-old boy with autism, used to sit around staring into space a lot. He barely spoke, and had temper tantrums. Then his dad started looking into animal therapy for kids with autism. He bought a few chickens for J.J., who dubbed them “ducks.” These days, his mother has said, “He’s able to communicate much better. And it all has to do with the chickens. He plays with them. He cuddles with them. And he runs around the yard with them…. It’s made a tremendous difference.”
A year ago the town where the Harts live, DeBary, started a one-year trial program that allowed residents to keep chickens in backyard coops. Now the city council has announced the program is ending; J.J. will be forced to give up his chickens by December 31. As council member Nick Koval said, “It’s unfortunate, and I sympathize. But we spend a lot of time and money establishing codes and ordinances for the protection of the citizens and taxpayers of this community. And I believe that they [chickens] belong in agricultural areas.
While it’s more common to use horses and dogs in therapies, J.J. has a connection with the chickens. Given that kids with autism are very sensitive to change, getting rid of the chickens could be traumatic. J.J.’s parents have hired a lawyer to get the council’s decision reversed.
Perhaps this story is hard to understand if you don’t have a child with autism or other special needs. Perhaps the pre-parent me would have wondered what the big deal was to give up the chickens. But now, I understand what it’s like to do anything and everything to help your child with special needs thrive, whether it’s chickens or alternative forms of therapies, as we’ve tried over the years. When you find something that works, it can seem downright miraculous.
Stories like this have cropped up over the years. Last January, a boy with Down syndrome in Coral Springs, Florida, who had a house-trained therapy pig was granted the right to keep him after officials threatened to fine his mother to $500 a day for violating local ordinances. In Lexington, Kentucky, parents of a three-year-old with cerebral palsy built a playhouse where he could get physical therapy; the local Homeowners Association asked them to take it down. Last year, because of their case, a House committee nullified deed restrictions on small outdoor structures deemed medically necessary for kids 12 and young. And in Spring, Texas, in 2012 a local family won the right to keep a baby kangaroo to help their 16-year-old daughter, who has Down syndrome.
My heart goes out to J.J. and his parents; I hope they win their fight. If J.J. and his chickens lived in our neighborhood, if it were a matter of enabling a child, then to me there would be no question: Let the boy have his chickens. It’s the humane thing to do. The mayor of DeBary, Bob Garcia, agrees. As he’s said of the chicken program, which he hoped to extend until 2015, “It had so many benefits for this child. And it would have shown that we’re a community that is compassionate and understanding.”