Parenting A Kid With Autism When You Have Autism, Too

Thursday, April 19th, 2012

April is Autism Awareness Month, and I’m turning over the blog to amazing parent bloggers. Today’s post is from Carol Greenburg, executive director of New York Special Needs Consulting. Carol is a special education consultant with a unique perspective: she is an adult with Asperger syndrome and the mother of a severely language-delayed autistic child. She is the East Coast Regional Director of Autism Women’s Network, a frequent speaker at conferences, universities and community-based organizations, and an editor of the site and book The Thinking Person’s Guide To Autism.

What autism means to me and my family:

One of the nicest parts of parenting an autistic child from an autistic vantage point is that I feel my son and “get” each other in special way that encourages  teamwork between us. His autism and therefore his need for assistance is more evident than mine, but he isn’t content to just receive help. He wants to offer help too.  He notices when I get into trouble, and without my even having to ask him, he passes along skills that I never mastered, especially in motor planning, an area in which he’s conquered many difficulties that I still haven’t. It’s been much easier for me to put my shoes on correctly since he’s started teaching me what he’s been taught. Sometimes non autistic people are amused when they see a highly educated, verbal person like me struggle with simple motor tasks that come easily to most adults. My son is one of the few people I can count on to never, ever laugh at me for that sort of thing, and that makes me feel safe around him.  I suspect many parents have to wait until their children are grown to experience that kind of reciprocity.

Three things I want other parents to know about my kid and others like him are…

Alone time is critical,  not just so that my son can avoid sensory overstimulation, but also because he needs quiet or even stimming breaks so he can deeply process all he’s observed or been taught on any given day.

Assume empathy. Despite reports to the contrary,  most of us are as empathetic as typically developing people, and I believe my son has a surplus of that quality.

When my child breaks something or pushes another child, he faces consequences. If he behaves in an unusual way  that is not hurting anyone or anything, I don’t apologize for him, or expect him to apologize for himself. I cannot imagine raising a confident child in an atmosphere poisoned by shame and self-loathing. When others have a problem with nondestructive, unaggressive evidence of his or my autism, it is their problem, not ours.

One misunderstood thing about kids with autism is…

There’s an assumption that the less verbal a kid is, the less independent they are in daily life, even if they need intensive support in school, as my child does. I suspect that talking is the single most difficult task that’s consistently demanded of my child. To compensate, he has learned how to do things at home for himself because he finds it easier to solve his problems quietly and creatively himself than to formulate a verbal request. He’s all action, very little talk. When a typically developing friend complained about the impossibility of reaching a cup on a high shelf, my son just got a stepladder and delivered the cup to his friend. Of course it’s important to encourage as much speech as possible, but I’m still really proud of him for cultivating self-sufficiency to cope with his language delay.

Some of the best things I’ve found to help my child are…

My son not only enjoys music and physical activity, they also help him self-regulate and regain focus. Both are inexpensive DIY coping mechanisms to address anxiety and promote focus.

My most effective parenting strategy is…

Autistic people are so often patronized or treated like we’re invisible, many of us have not experienced what it feels like to be approached with respect. So my husband and I try to consciously teach my son the concept by treating him with respect and by making a special effort to treat others with respect in his presence.

One of my favorite stories about my child is…

It’s just too hard to choose, so I’ll just offer up this week’s excitement. A few nights ago my son did something that reminded me to alway assume his comprehension. He needed a  haircut and I said so in front of him. Before I got around to taking him to the barber, he became rightfully impatient with my dilly-dallying and cut his own hair in the middle of the night. The action was his, but the responsibility for it was primarily mine. As we surveyed the bald patches the next morning, his only comment was “Not going to the barber.” I advised him not to jump to any conclusions about that. One buzz cut later he looks like a tiny,but noble, Marine. Semper fi.

Better Autism Parenting: One Dad’s Secret

Monday, April 16th, 2012

April is Autism Awareness Month, and I’m turning over the blog to amazing parent bloggers who have kids with autism. Today’s post is from F. Lewis Clark, who writes Big Daddy Autism. He’s been called “The Dave Barry of Parenting.” As he notes, “I’ve also been called morbidly obese, ego-maniacal and kind of gross.”

Always real, ever funny, his stories portray how an ordinary dad makes the most of life with a teenage son, Griffin, who has autism. He is also the author of Big Daddy’s Tales From The Lighter Side Of Raising A Kid With Autism. The following is an excerpt from his latest e-book, Son of Big Daddy (a collaboration with blogger Lynn Hudoba) and is available on Kindle.

Griffin, my fourteen year old son, is autistic. I could sugar coat it by saying he is merely developmentally challenged or gifted. But the truth is, no matter what label we use, Griffin is significantly disabled by this perplexing disorder. Autism is a huge part of our lives.

One morning, about a year or two  ago, Griffin said to me,

“Daddy!  I dream last night!”

That got my attention. Up until then I didn’t even knew if Griffin dreamed. Of course I suspected it. However, he never told us he did. It was still a rarity for him to talk about something as abstract as a dream. So I pressed the subject by nonchalantly asking;

“Oh yeah? What did you dream about last night?”

Without hesitation he blurted;

“Last night I dreamed Barney was at the Weather Channel talking about severe weather alerts in the Northeast! Do you believe that?!?”

Yes I did and I still do. It may be odd that my teenage son dreams about an imaginary, purple dinosaur broadcasting storm alerts. But this is my life. In spite of the fact that it is not always easy, life with Griffin is, humorously bizarre. We believe the only way to approach it is to kick back and enjoy the show.

Griffin loves elevators, Wilford Brimley, and the Weather Channel. He has embraced these simple pleasures with the same passion some kids reserve for their favorite sports teams.

Griffin’s infatuation with the weather started after Hurricane Wilma blew through Florida. His fear of thunderstorms has been incredible ever since. Desperate for anything to ease his anxiety, we thought if he could see weather reports and know what’s coming, his angst would be somewhat allayed. So we introduced him to The Weather Channel. It wasn’t long before Griffin became a weather junkie.

While being constantly tuned into the weather has done nothing for his trepidation of thunderstorms, it did give him something to talk to his family about. Obsessively.

During one recent squall, Griffin hunkered down in the closet and sobbed about how much he wanted to be storm chaser. When his mom, Mrs. Big Daddy, calmly explained that storm chasers don’t hide in the closet when it drizzles, he nearly vomited. Since crying so hard you puke is not what the Weather Channel is looking for in its on-air personalities, our plan for Griffin becoming the next Al Roker seems to be fading.

In a way, being told your child is disabled is a death. A death of what you had planned for your life. Griffin has taught us that getting too attached to having things go as you planned, is a recipe for disappointment. By accepting that we have little control over our futures, we spend more time living in, and enjoying, the present. Even when it rains.

Sibling Double Standards And Kids With Special Needs: “It’s Not Fair!”

Thursday, April 12th, 2012

April is Autism Awareness Month, and I’m turning over the blog to amazing parent bloggers who have kids with autism. Today’s guest post is from Jana Banin of I Hate Your Kids (And Other Things Autism Parents Won’t Say Out Loud). Jana, a magazine writer, is mom to Benjamin, 8, who has autism, Zack, 6, and Ayla, 2.

“It’s not fair!” Like many six-year-olds, my son Zack utters this phrase at a deafeningly frequent rate. The thing is, most of the time he’s actually right. Spend a couple of hours in our house and it’s easy to see why. Here, a few examples from a typical evening.

5:00 pm: Zack does homework while Benjamin, his 8-year-old brother, is sprawled out on the sofa watching TV.

5:45 pm: If he’s racked up enough points on his behavior chart, Zack is allowed a timed session on the iPad. Benjamin, on the other hand, has had constant, unlimited access to the thing from the moment we walked in the door.

6:30 pm: Zack would not be eating dessert if he hadn’t tacked a “please” onto his request, while all Benjamin had to say is “I want cookie.”

6:32: While Zack, with the focus and precision of a surgeon, is busy turning two Oreos into one giant Oreo, Benjamin swipes a piece of his project. Zack receives a replacement cookie, but Benjamin gets off scott free.

6:35: Benjamin washes the treats down with a swig from his baby sister’s sippy cup. When Zack tries to do the same thing I stop him. Serious whining about the injustice of this ensues, and I sternly tell Zack to move on.

No, I did not mistake Cinderella for a parenting manual. I treat my children differently simply because they are two very different kids. Zack is a typically developing kindergartner who has to follow the rules And then there’s Benjamin, who has autism. The rules generally just don’t apply to him.

* Benjamin works crazy hard in school and with his home therapists, but he isn’t in a place academically where he’s coming home with very many worksheets or projects.

* Left to his own devices Benjamin would spend his down time searching for things to eat and/or destroy. We’d much prefer he hang out in front of a screen—especially if that means playing educational, age-appropriate games on the iPad.

* Benjamin is, miraculously, finally verbal enough to ask for what he wants. For now that’s good enough for us. The pleases and thank yous will come soon, I’m sure.

* And punishment, well, that’s a tricky one. We are fairly certain that when Benjamin, say, wakes up at 4 in the morning and tears through a box of brownie mix he knows he’s done something wrong. But for whatever reason—maybe because his social deficits impede him from caring about what we think, or because his impulses are so hard to control—punishing him just doesn’t work. He’d do the exact same thing 20 minutes later if he knew he could get away with it again. We’re working with his therapists on coming up with modes of discipline that will be effective and meaningful to him, but it’s still a work in progress.

Sometimes I feel incredibly guilty about my double standard parenting, and other times I’m just too busy trying to get through the day to give it much thought. Overall, though, I’m sort of happy this is the way it is for Zack.

My kid is learning earlier than most of his peers that life isn’t fair–and he’s developing the tools to cope with and be okay with that. More importantly, he’s also learning life is also unfair for kids with special needs. He knows how hard it is for Benjamin to express himself, make friends, and learn things that come naturally to most children. In other words, Zack is already more understanding and empathetic than a lot of adults out there.

Of course, autism doesn’t always inform my parenting decisions.

“How come Benjamin is downstairs?” Zack asked as I tucked him into bed the other night. “Why doesn’t he have to go to bed at 7:45 like me? It’s not faaaiiiiiir!”

Zack was wrong–it was fair, and I was thrilled to tell him why.

“Benjamin’s older than you. When you’re 8 you’ll get to stay up later too.” And that was that.

Parenting Autism: Yes, Our Kids Do Show Affection

Monday, April 9th, 2012

April is Autism Awareness Month, and I’m turning over the blog to amazing parent bloggers who have kids with autism. Today’s guest post is from Jennifer Byde Myers, mom to Katie, 5,  and Jack, 11, who has autism and cerebral palsy; she’s married to Shawn and they live in the San Francisco area. Since 2003 Jennifer’s been blogging at www.jennyalice.com, chronicling her family’s journey from diagnosis to daily living. She is a founder and editor of The Thinking Person’s Guide to Autism. Her writing has been featured at Salon.com, Autism Speaks, Care.com, and in several books including My Baby Rides the Short Bus. Jennifer has been interviewed on NPR, most recently on Forum with Michael Krasny. Here’s what she had to say:

What autism means to me and my family:

Autism adjusts our focus and makes it clear to us what’s important, and I think we celebrate small victories that we never would have noticed, much less appreciated. We know who we are as a family, what our values are and how we want to participate in our community. We figure out what we want to do and make the accommodations to make Jack successful. It’s made us more creative that way.

My child is awesome because…

Jack has a great sense of humor. He always seems to get the joke. Nearly all of his caretakers, teachers and therapists have concluded that my son is silly, funny, and perhaps a bit snarky. We foster and encourage humor in our family, and Jack is a part of that. He teases his sister, plays with his aides and has the best laugh.

Three things I want other parents to know about my kid and others like him are…

1) Just because he can’t talk doesn’t mean he can’t hear you. Kind words, mean words, he hears all of it. With my son, and with any person with disabilities we should start with, “Hello.”

2) Behavior is communication. Understanding this means you can begin to understand my child. If he’s tapping his fingers and he looks like he’s bored, he probably is. And if he’s tapping on the back door he’s waiting to go outside. We all use behavior to communicate; we turn away, we cuddle up. Some of Jack’s behavior is very subtle, like his squint of the eye to say “yes,” and some of it is very big, like throwing himself on the ground when we say he can’t go outside, but all of it is how he is doing his very best to communicate with us.

3) My kid is still a kid. He’s a child first, and always before his disability. And he is more like his family than like any other child with autism. He likes spicy food like his dad, and lots of pillows on his bed like his mom. Jack and his sister Katie both love music. People get wrapped up in labels, and they can help people to understand how to accommodate his needs, but he is an individual kid who has his own specific needs, like any other kid.

One misunderstood thing about kids with autism is…

That they do not show affection or develop relationships. I don’t know any autistic children that do not have significant relationships. Jack’s affection might be a light brush of his hand across yours, but if you pay attention you will see it. People who treat my son with respect are very quickly rewarded by Jack engaging with them. He shows preference in his aides, in his friends, and clearly shows his love for his sister and cousins with pats on their little heads as he walks by them. Jack loves the dog, and moped about the house like the rest of us when our other dog died last year. He goes to the gate to say good bye

Some of the best things I’ve found to help my child are…

Music, road trips, and nature; most of the time we combine all three. Jack loves rocks, pebbles, tan bark, sand, anything he can sift through his hands so we visit my family in Tahoe, or go to Yosemite quite often. We took the kids across the country (in an RV) a couple of summers ago and visited every National Park along the way. Give Jack a good song and a nice view, and he is set.

One of my favorite stories about my child is…

Jack has always been a “very good eater,” and we’ve been taking him to restaurants since he was a baby. Before he could walk he had already been to some of the finest restaurants on the west coast. We took a family vacation to Waikiki when he was 10 months old—he had a full set of teeth and a big appetite. Every day for lunch he would eat an entire chicken quesadilla with mango and papaya salsa and two glasses of milk. Waiters and waitresses each came over to meet the baby who could eat the whole quesadilla.

My most effective parenting strategy is…

Date night. My husband and I go on a date almost every week. It might seem extravagant, but keeping our marriage strong, and staying on the “same sheet of music” make parenting a lot easier. We talk about what is happening for our family, events that are coming up, and plans and accommodations we need to ensure success. Those Friday night catch-up and strategize sessions make life go smoother, and I love hanging out with my husband. Happy parents equal happy kids at our house.

Top image/Mandy Martyn Images

10 Key Things To Do For Your Child With Autism

Thursday, April 5th, 2012

In honor of Autism Awareness Month, I’ve lined up a series of guest posts from autism bloggers and experts. Today’s is from Kerry Peterson, a speech-language pathologist and board-certified behavior analyst who’s been evaulating and treating children with autism and evelopmental delays for more than 15 years. She is the director of the TrainIn Program at Kaufman Children’s Center in West Bloomfield, Michicgan, a center-based program for kids on the autism spectrum that uses the principles of ABA (Applied Behavior Analysis) and AVB (Applied Verbal Behavior) to teach language, communication and related skills. Kerry is also a columnist for the special-needs blog at PediaStaff.

If your child has a diagnosis of an autism spectrum disorder, you may occasionally find yourself reeling with new questions and concerns. As a speech pathologist, I have worked with hundreds of children with autism from very young toddlers to teenagers. I also have a 21 year-old niece with Asperger’s syndrome! The challenges she faces today are quite different from those of years past. I have known children severely impacted by autism and others who have had wonderful outcomes no one would have predicted in those earliest years. Parents of a child with autism may take different paths on the road to intervention.  Here are several things that I have found very successful families do when planning and advocating for their child with autism:

1. Explore autism resources in your local community, in the state and nation-wide. Get involved in support groups and build a network to share, get information and learn from families who have experience raising a child with autism. Remember, every child with autism is very unique and your child will likely have a journey unlike anyone else.

2. Gather accurate information about best practices for treatment options for children with autism. Go to credible sources for information to help guide your plans for treatment. Recommended reading: Committee on Educational Interventions for Children with Autism (National Research Council) by Catherine Lord and James McGee (2001). If you have a young child remember, early intervention is the key to improving your child’s prognosis.

3. Make sure your pediatrician is willing to spend time when you need help managing your child’s care. Pediatricians often have very limited training in autism. Be sure your pediatrician is willing to spend time to listen to your ideas about important topics like treatment options, diet, medications and future immunizations, etc.

4. Find out what is available to your child through your local school district and your health insurance. Children are eligible for special education services from birth to 26 years of age. A child who is under three is able to receive services in the home in many school districts. At three, children are eligible for special education preschool programs and services. Become knowledgeable about the IEP process and your child’s rights. Become familiar with your insurance policy and determine if treatments such as speech therapy, occupational therapy and ABA (Applied Behavior Analysis) are covered benefits.  Read about upcoming changes in statewide legislation that may affect covered benefits for children with autism.

5. Keep your young child engaged in social games, sensory motor play and interactive routines. For older children, explore adaptive sports where they can get a good physical workout and develop relationships. Avoid letting your child spend excessive time on their own or with technology such as television, iPod and iPads. Your child needs to have social interactions to understand language and understand the social world around them.  Technology will likely come easily to your child; the social world will prove much more challenging.

6. Typical children have hundreds and hundreds of interactions in a day. Children with autism need others to actively engage them to even have a fraction of the interactions of a typical child. Early on, these should be in the form of asking for what they want to play with, eat or what they need to do a preferred activity. It may be that the environment needs to be engineered so the child does not have free access to his or her favorite things. Put food items up and out of reach, put toys in clear tubs on shelves. For older children you may need to set up structured play dates and facilitate turn taking, sharing and conversational skills through practice.

7. If your young child is not yet using words, consider teaching him or her to request preferred items with simple manual signs. Avoid teaching general signs such as “more” and “all done” and instead teach specific signs for items they most want throughout the day (cracker, ball, juice). Prompt your child’s hands and then model the sign and say the word for them several times. Always model the correct word vocally and try to get your child to imitate the word. There are wonderful websites and applications for looking up signs. You do NOT need to take a sign language class!

8. Use visual supports! For young children or those who are not able to read use pictures or objects to let them know what will happen next throughout the day. Bring your child a picture of the bathtub or a tub toy to let them know it is time for their bath. For older children use lists, daily schedules, reward charts and social stories to help them know what is going to happen each day and what behavior is expected for each situation they encounter.

9. Become familiar with how your child processes sensory information. Children with autism almost always have difficulty processing sensory information effectively. They can become easily upset at things we hardly notice (getting hands dirty, the toilet flushing, tags on clothes). What experiences do they avoid and what do they seek out repeatedly over and over (spinning objects, smelling objects, lining up toys). Without intervention, sensory challenges can limit important learning opportunities throughout the day.

10. Seek training to understand how and why children develop challenging behaviors. Because children with autism have limited communication skills they are more likely to develop inappropriate behaviors to gain attention, to get items they want and to prevent doing activities they do not like. Understanding challenging behaviors and how to respond in different situations can help prevent behaviors from becoming established patterns. It is important to intervene early to reduce the risks of long-term behavior problems.

Image of Autism Awareness ribbon via Shutterstock