Autism Awareness Month

Celeb Q&A: Autism Advocate Holly Robinson Peete Answers YOUR Questions

Written on April 23, 2013 at 8:30 am , by

Holly Robinson Peete and her son Rodney James (RJ). Photo Credit: Christopher Voelker

Last week, Family Circle interviewed actress Holly Robinson Peete about issues that were on our mind. This week, we interviewed her to get answers to what’s on your mind. That’s right, all these insightful questions came to us via our Twitter and Facebook accounts. Read about how a gluten-free diet affected RJ (Holly’s 15-year-old son with autism), ways to get employers to hire adults with autism and more.

Q. There has been such a surge in the number of autism diagnoses lately and many of us are looking for answers. @REALMOMMA2155 is curious if you think genetically modified organisms (GMOs) contribute to the diagnosis.

A. I’m not a doctor or scientist. I’m just a mom. But I do think there’s a genetic predisposition and there are environmental triggers. I feel like that combination, in my child’s case, is what resulted in autism. I also feel strongly that we’re not looking at environmental triggers. We’re not looking at each kid as a separate, genetic being. We line them up and say: ‘All kids should do this, eat that, get this.’ It’s important that we look harder.

Q. Speaking of what kids eat, Janeen Marie wanted to know if you tried putting RJ on a gluten free diet. 

A. Yes. One of the best tips I got from another mom was to hurry and get him tested for allergies and food sensitivities. He tested off the charts for gluten and wheat. It was more difficult for him to connect when he was eating pizza and birthday cake. He functioned much higher when he was not on any gluten products. But that’s just my kid. Every parent should know what their kid is sensitive to food-wise.

Q. What about sleep? Kim Luallen was curious if your son is a non-sleeper and if you had any suggestions.

My son does have trouble falling asleep and like any teenager he needs his sleep. We use melatonin. I never recommend anything, but that’s worked for us. We use it in very low doses and we find it gives him that little window to fall asleep. I know they’re still doing studies, but for our kid it has been a miracle.

Q. Donna Willis Coghlan wrote in asking about education: “How can we get schools to focus on the strengths of these kids? Many have unique skills that could be enhanced to give them an occupation someday, but instead they’re continually forced to be like ‘typical’ kids,” she says.

A. It’s very difficult when schools fall into the cookie cutter mode. There are so many gifts that kids with autism have that need to be nurtured. Most times, that’s something you have to do on your own or enlist after school help for. Also, get connected with other parents who are experiencing what you’re going through. I know it’s easier said than done, but I know families that have moved to other neighborhoods or cities that are a little more autism- and special needs-friendly than where they were. It’s all about being an advocate, staying online and looking in your community for help.

Q. Kathleen Stuart wanted to know about outlooks for adult life: “If your child is fairly high functioning – but needs assistance – there isn’t much out there in the way of adult programs or job assistance,” she says.

Yes, there isn’t much out there. The unemployment rate for adults on the autism spectrum is hovering around 90%. It’s high and that’s another message we have to get out. These people can not only be great employees but they can be your best employees. They’re loyal, have a sense of purpose, want to be somewhere every day, love routine.

I always find out very specifically about corporations who hire special needs adults. At my agency there are several. I always say I’ll be a great patron if you hire these adults because they need this and you need them. We’re getting a database for the HollyRod Foundation site of companies that work hard to employ adults with autism. We also have a tremendous amount of excitement about the fact that we’re going to be opening a compassionate care center in another year and will have a restaurant run by adults with autism there.

Q. On top of your foundation work, you’ve also co-authored the children’s book My Brother Charlie with RJ’s twin sister, Ryan. @Patti_pmbelo tweeted us wanting to know if you plan on writing another children’s book on autism.

A. Yes. Ryan and I are writing a follow-up to My Brother Charlie about autism and adolescence. We’re writing about the struggles people don’t talk enough about, the difficulties children have when they cross over into adolescence, the surge of hormones, puberty. It’s a different set of challenges when they’re on the autism spectrum. In some ways it’s like getting the diagnosis again. You have to come up with a new game plan. We’re hoping for a April 2014 publishing date.

Want to hear more of Holly Robinson Peete’s thoughts on autism? Click here.

Q&A: 5 Questions for Actress and Autism Advocate Holly Robinson Peete

Written on April 15, 2013 at 3:41 pm , by

Photo Credit: Christopher Voelker

When I met Holly Robinson Peete a few years ago, I couldn’t help but be in awe of her passion. It wasn’t just for being an actress or a phenomenal mom (that’s four kids and two big dogs in the pic!), but for her autism advocacy. Her 15-year-old son RJ has autism, which she has spoken about openly in interviews and even co-wrote a book on the subject. She also co-founded the HollyRod Foundation, which helps families living with Autism and Parkinson’s disease. As my favorite hashtag in her Twitter bio says: “#ServiceIsTheRentWePay4Living.” Here’s what she told Family Circle about how having a child with autism impacts a marriage (she’s the wife of NFL Quarterback Rodney Peete), why the teenage years are so trying and the reason we all need to befriend a teen with autism today.


Q. So often we see stories in the news about autism that are focused on very young children and even the pre-natal habits of moms. As the mother of a 15-year-old son with autism, what do you think has been missing from the discussion of older kids?

A. That autism is in many cases a lifelong disorder and when children find themselves at the intersection of puberty and autism it can be an unforgiving combination. Many teens with autism struggle so often with new challenges like OCD, depression, regression, seizures, social ostracization and other issues. Being a typical teenager isn’t easy. When you have autism, it can be extra difficult. We need more public awareness about these hurdles as well as compassion towards these young people.

RJ is 15 (and he has a twin sister Ryan who does not have autism) and his biggest issue is his difficulty making friends. The teen years are rough with peer pressure and it can be crippling for someone with social skills deficits. If you have the opportunity to befriend a teen with autism, please do it. They need you.

 

Q. When we met a few years ago, I remember you spoke about the challenges of getting your husband Rodney to connect with RJ at first. Can you offer advice for our readers who may be experiencing the same thing with their husbands right now?

A. First, I would say to get my husband Rodney’s book Not My Boy. He is a man who stayed deep in denial about his son’s autism for years. He had to learn to tweak his expectations for his son, discover a new normal that flew in the face of every dream he had for his boy. I made him write this book because I wanted other dads to not feel so alone.

I thank God for Rodney every day. We came dangerously close to going our separate ways. I just couldn’t fight for my son and my marriage at the same time. I needed him on my team.

Q. Can you talk about how having a child who is autistic impacts a marriage? You’ve said that this is something the media doesn’t discuss enough so let’s try to change that.

A. There is sadness, blame, guilt, resentment, fear, mistrust, financial and emotion stress – just a slew of hurdles parents of children with autism have to clear. It is hard and when one person gets too far off the same page, it can feel overwhelmingly insurmountable. The key is constant communication and a whole lot of empathy and patience for your spouse and what he or she is experiencing. Also make room for me-time and date nights or you will lose yourself in the struggle.


Q. Autism Speaks recently sent me a press release listing things we didn’t know about autism just one year ago. They said that after age 4, many nonverbal children with autism develop the ability to use spoken language. As a board member for the organization, why do you feel it is important for people to know this?

A. That’s great to know but my personal concern is for those children who never become verbal. You cannot imagine the heartbreak a parent endures to never hear the words “Hi, Mommy” or “I Love You.”

At HollyRod, we have a “Give the Gift of Voice” program where we donate tablets with communication apps to non-verbal children to help them communicate. It’s simply awesome. We have a new partner FUHU (they make the popular Nabi tablet) who is helping us get more tablets in the hands of these kids. They are also helping us develop a new HollyRod app and donating a million dollars to us to help us with our capital campaign for our Autism Compassionate Care Center where we will treat whole families affected by autism. The numbers are rising and they need help desperately.


Q. What’s the most important parenting lesson you’ve learned from raising a son with autism?

A. My son has taught me patience, acceptance, compassion, advocacy and pure love. As he says: “I may have autism, but autism doesn’t have me.”

Want to hear more from Holly? You had questions for her that you posted on our Facebook page and we answered them. Check back next week to read what she had to say!

“I Cannot Have This Conversation Right Now.”

Written on April 3, 2013 at 4:17 pm , by

 

By Kassiane Sibley, an editor at the Thinking Person’s Guide to Autism.

As more kids are identified as being on the autism spectrum, it is becoming clear there is a missing and critical skill that needs teaching: self-advocacy. That’s where I come in. I am an autistic adult who teaches autistic youth how to make their needs known and get them met.

Most of the kids I work with are still pretty young and are at a stage where they work through the process with a mentor. Together we identify what they want or need, who can make that happen and what we need to do. Then we meet after an advocacy session to evaluate how it went. The process is highly adaptable to the needs and abilities of the child.

For example, “C” was 10 years old and pre-verbal. He had a lot of frustration and would lash out and have meltdowns. To find one issue to focus on, I looked at his behavior assessments and it seemed as if the big problem was that he was being made to do things without having a choice. “C” didn’t have the word “No.” Adults would tell him to do things, he’d resist, they’d force him and then he’d lash out. So using sign language, AAC (Augmentative and Alternative Communication such as picture boards) and words, I taught C the word “no.” I also put forth the edict that absolutely every adult around him had to respect that “No” when he used it. That’s key. Lashing out worked. I had to make sure “No” worked better. It is an assertion of his needs and his bodily autonomy.

Teaching C “No” didn’t look like most mentoring meetings. We did a significant amount of hanging out and stimming (self-stimulatory behavior like rocking back and forth). We had “Yes” and “No” PECS (Picture Exchange Communication System) available. I’d steal his blocks and then if he got frustrated I’d emphasize “No” and back off. He’d get in my space and I’d say “No” and sign “No” and hand him the PECS card. If I asked him to do something and he was indicating not wanting to do it, I’d make a really big deal out of all the ways to say “No.” And when it clicked it was obvious, unambiguous and to be respected. “No” is a really important tool. It’s advocacy and it needs to work.

A very different 10-year-old I work with, “B,” is extremely verbal and also has a lot of frustration.  Our sessions look more traditional. “B” tells me something that’s causing him problems – usually there are a number of things – and we try to see if there’s anything all those issues could have in common. For example, he gets frustrated when he’s feeling interrogated, when something takes him by surprise or when he doesn’t know what is going on. He’s really fluent with language, so the things that fall out of his mouth sound coherent but they aren’t actually thought through, which people misunderstand a lot. Once he gets to that point, conversation needs to stop.

Much like with “C,” this was a “We’re going to teach a single phrase” thing. We worked on “I cannot have this conversation right now.” It’s a reasonable middle ground: it may not be what adults want to hear, but it’s not disrespectful. It’s “B” setting a boundary in a way he can – and it’s not unreasonable to expect adults to respect that boundary.

As my students grow in their base skills, such as boundary setting as demonstrated above, we do work on individual events as well. My goal is to give them a library of advocacy skills that they can eventually pull from in most situations. That way, when they need to advocate for themselves, they know at least where to start. With some general self-advocacy skills and practice with specific situations, the autistic kids I mentor are way more ready for the world than I was. I’m just not sure the world will be ready for them.

Has a mentor changed your child’s life? Post a comment and let us know.

 

Kassiane Sibley also blogs at Radical Neurodivergence Speaking.

My Son, Myself

Written on April 3, 2013 at 12:25 pm , by

By Carol Greenburg, Executive Director of New York Special Needs Consulting, an advocacy and consulting business that helps parents get educational services for children with disabilities.

 

It’s the first question people ask me during conversations about autism—and those conversations are frequent in my world. “Does being autistic give you an inside scoop on your son’s inner life?” The answer is yes.

Because I’ve walked this road myself, sometimes my familiarity helps me navigate its twists and turns with my son. For example, I look at similar special interests, sensory reactions and stims (self-stimulatory behaviors) my son has now that I had way back when. I think about what spurred them in me to figure out what’s going on with my son. I can try to help him meet needs he may be having trouble articulating.

I’ve outgrown my vocal stims, like singing the same lines of the same songs over and over in a predictable order or distorting my voice by speaking when I inhale instead of when I exhale. My son has never seen me do them. But what amazes me is that he began doing them independently at roughly the same age I did as a child.

There are other times, though, when I’m as mystified or frustrated as any non-autistic parent by my son’s difficulties. That’s when I remind myself of something I know on an almost cellular-level from my personal experience: Parenting an autistic child can be hard; being an autistic child is harder.

You think you’re upset when your kids lash out during a meltdown? Believe me, they feel worse. On the other hand, that wave of joy that almost knocks you down when your kid reaches a goal set for him by you, his teachers or therapists? That’s puny compared to the feeling of achievement autistic children or adults feel meeting goals we set for ourselves.

My son won’t be a child forever, though he’ll always be autistic just like dear old Mom. Interacting with him as he grows up may present challenges, especially to non-autistic adults. But those challenges are worthwhile, at least that’s what my non-autistic friends report when I ask them what it’s like to hang out with me.

At any age, being an autistic in a world not built for our brand of brain function is a tougher challenge for us than those interacting with us. Always. But that, too, is a  worthwhile challenge. My son and I know what it feels like to triumph over difficulties presented by either autism itself or, more often, by the frustrations posed by living in a frequently incomprehensible, uncomprehending world. And that feeling of accomplishment is magical on a level almost impossible to communicate to non-autistics.

 

Carol Greenburg is also the East Coast Regional Director at the Autism Women’s Network and co-editor of the Thinking Peron’s Guide to Autism, available on amazon.com.


 

It’s Not Just Dinosaurs and Trains

Written on April 2, 2013 at 5:08 pm , by

 

By Emily Willingham, science editor at the Thinking Person’s Guide to Autism.

 

You might have learned somewhere that autistic people tend to have obsessions. Back when my oldest son, TH, was diagnosed with autism, the clinician types called them “unifocal obsessions.” They’re some target of attention that was unusual for the child’s age or developmental stage or just flat-out weird. Often, writers or TV shows will give examples of these unwavering interests, with trains or dinosaurs usually topping a list. What’s funny to me is that if you obsess about these things as a child, it’s considered strange. But if you do it as an adult, you’re what we call a “professor.”

What you might not see on such lists is the enormous range of interests that autistic people can have. I took a quick Facebook poll of autistic people and autism parents for this post, just to get some specific examples. Among the many replies: cooking, catalogues, Blues Clues, gymnastics, Devo (yes, the band), Mario, US presidents, insects, LEGO, Minecraft, logos, music, antique surgical instruments, maps, old drum machines, astronomy, elevators, receipts, medical equipment, and sea turtles.

In our case, our son’s major, lifelong obsession is acorns. He’s basically a human version of Scrat from the Ice Age movies, and, like Scrat, thinks that heaven should be paved and furnished with acorns. Since he was a toddler, he’s loved this little fruit of the oak tree and is still a kid who yells out “acorns!!!” with the kind of excitement children usually reserve for spotting the ice cream truck.

Another part of the “autism obsession” cliché is that autistic people, once you get them rolling on their subject of interest, will not stop talking about it if they’re speaking autistics. We’ve never

had that with our son and acorns. In fact, our son might know the genus for oak tree, but I’m not sure because he doesn’t talk endlessly about acorns if someone brings them up. (OK, I just asked him, and he does know the genus; it’s Quercus. He actually knows quite a few common names for oaks, especially the burr oak, which makes acorns the size of ping-pong balls, swallowed in their enormous, fuzzy hats that look like tiny thatched roofs. Even if you’re not an acorn fan, burr oak acorns tend to astonish.)

But my son’s obsession turns more to the visual and the acquisitive. He’ll look at an acorn for long periods of time. One single acorn. He names them—the most recent was called “Edward.” We don’t know anyone named Edward, except for that acorn. He sleeps with them. He asks for them for Christmas. When he can, he collects them by the dozens and creates elaborate, swirling designs on the floor or ground with them, which he then requests that we document photographically.

Acorns are everywhere in our lives—under feet, in the washing machine, in the crannies of our minivan (aware of oak disease, I try hard to clean these out) and under mattresses. We have books about acorns and acorn holiday ornaments. Acorns have soothed our son’s social anxiety, making him able to enter a classroom, and they’ve served as a reward to hold out for a job well done. Like Scrat, our son is happiest when he’s around these little tree nuts and that makes us happy, too.

Are acorns his only interest? No. He loves Pokemon, chess, maps, all things about the natural world, mythology, and the periodic table of elements. All of those focused interests share the commonality of underlying order and rules and organization. But an acorn? Well that that tiny seed holds all the instructions for becoming an oak tree. And there, the rules end. The rest is a matter of the right mix of nurturing and leaving the way open to potential. Similarly, our son arrived in this world programmed to grow and develop as a human. But there, the rules end, too, and not a day goes by that he doesn’t show us the benefit of leaving him space to find his potential, and that includes space for the things he enjoys most.

Have (or know) an autistic child with an interesting passion? Post a comment and tell us about it here!

 

Emily Willingham is science editor at the Thinking Person’s Guide to Autism and managing editor at Double X Science, an online science magazine for women.

 

What I Love About Thursdays

Written on April 2, 2013 at 4:29 pm , by

 

 

By Shannon Des Roches Rosa, senior editor at Thinking Person’s Guide to Autism.

 

Every Thursday afternoon I have a panic attack.

My three children, including my autistic son, have tightly scheduled appointments, practices and playdates in various, far-flung locations. Their drop-off times leave little room for error much less the occasional traffic-blocking train. If my sixth-grade son’s bus is late, if my high school daughter forgets her soccer cleats, if my fourth-grade daughter’s best friend’s mother cannot make our five-minute pick up window, it all falls apart. Sometimes I hate Thursdays.

But I also love Thursdays.

If my clockwork schedule clicks into place–and it nearly always does–all three of my children are delivered to people and places that make them radiantly happy. My high-schooler gets focused soccer coaching that channels her rule-based intensity into skills, success and pride. My autistic son spends time with his favorite person in the world: a former linebacker of a therapist whose workout takes advantage of my son’s physical strength, builds his stamina and plays to his excellent ability to understand spoken language while not requiring him to perform the more arduous task of producing it. My eight-year-old girl and her soul mate friend-who-is-a-boy tap into each other’s wild creativity to build countless fantasy worlds both on paper and in the Lego-unleashed universe of Minecraft.

My children spend Thursday afternoons as contented beings which fulfills one of my primary goals as a parent. But what I love most about Thursdays, selfishly, are the windows this tricky schedule creates. Three windows, to be exact, that give me precious time alone with each of my children.

Thursday is an early pick-up day at school for my youngest, which means we get to share library or ice cream time before I pick up the other kids. Sometimes she allows me a sneak peek into a new story or world that will form fully later that afternoon when her play date starts and her fiery, magical partnership re-commences.

My son and I get a long drive home with just each other after dropping off his sisters. We sing together while I marvel at his perfect pitch and the ever-longer songs he sings independently. I often wonder what his increasing ability to string melodic words together might mean for his long-term spoken language abilities.

And I particularly savor the final hauling leg of the afternoon, when it’s just me and the coltish, deeply thoughtful young woman who is my eldest. She still sits in the spot behind the passenger seat (where her child self sat) and chats with me about her cares, worries and obsessions. At times, I wonder if on a future Thursday, she may decide that I don’t understand her and may not want to be alone with me at all. She embodies how fleeting my time with my children is—and how precious as well.

I sometimes am asked how I manage to balance my attention between my children. The implication is generally that, due to my son’s autism, the girls are getting short-changed. And I can see how schedules like our Thursdays might be perceived as a bit of overcompensation. But autism doesn’t change my fundamental connections with my children—different as all three of them are. It certainly doesn’t change how much I love my son and want to spend time with him. And it doesn’t change how much I love and want to spend time with his sisters.

Have you had trouble juggling your kids’ needs? Post a comment and tell us about it here!

 

A self-described writer/editor/parent/geek, Shannon Des Roches Rosa pens a personal blog, Squidalicious, and is a contributing editor at BlogHer.com. She also co-edited Thinking Person’s Guide To Autism, available on amazon.com.