Monthly Archives: March 2012

On leopard print bras and girls with autism

Standard

A friend  has been giving us bags of her daughter’s clothing for many years.   The daughter is a cheerleader,  a dancer, a black belt in Karate, a popular girl. They give us Hollister bags packed with neatly folded t-shirts,  denim skirts with sparkly embroidery,  and camis of every color and style.  Lately we’ve been reaching in those bags and pulling out lacy bras, animal prints……..items that I wouldn’t think to buy for my daughter with autism.

As early as  fourth and fifth grade, it’s easy to see which girls are going to be popular: the ones with clothes from the trendy stores, the ones who have good haircuts, just right clothes. How do they know what’s in, and what looks good?

The bags of clothing inform me and challenge me.  Typical teen girls spend a lot of time trying and retrying different combinations of clothing. Figuring out new looks and new identities. Trying desperately to be comfortable in changed bodies. As I pull the items out of the bags,  I think:  how do I know which cami goes under which shirt? When is it okay to show straps?   Will these shorts cover the important parts? Teen girls beg their moms to go shopping, and hide clothes and make-up that don’t pass scrutiny so they can  change  when they are out of Mom’s sight.

How many times an hour does a typical girl adjust her clothing? How many times a day does she check her hair in the mirror? Unconsciously check her hair with her hand?  How do I get my daughter with autism to check all of this when she is away from me?  Which fashions will hold up with the least amount of tugging?

I remember when I was in middle school, banished to sitting on the  hallway floor for passing notes in math class, I was approached by an older boy who reached out his hand  to touch my breast.  I told him to leave me alone.  What would a girl with ASD do?   Should we keep our girls covered safely with loose hoodies,  dress unattractively, to avoid unwanted attention? Will that even make a difference? Rates of sexual assault for girls and women with disabilities are 2 times the rates of  those without disabilities.

I look at styles in stores and on the internet.  I think about what styles might work for my daughter, or other girls with autism.  I look at what girls are wearing : the teens on Facebook  pose provocatively  in strapless dresses, leaning forward to allow a peek.

I look at celebrity role models and I get confused. I think about Selena Gomez, growing from Barney to Disney to Justin Bieber. Miley Cyrus, moving from Hannah Montana to pole dancing.  Pretty Little Liars? Gossip Girls? Rihanna?   Down the rabbit hole we fall….but it changes the story if mom is right next to  Alice, pointing out the just-right bottle.

So we want our girls to look cute, and “in” and socially acceptable. We want them to explore and find their own identities. But…. what if they are stuck in Pokemon world? Do we push them to learn about sexy?   We want them to have friends…….but do the other girls have to be so ….mature? How can our daughters have friends, when the other girls are interested in romance and Vampires, and ours are talking non-stop about Phineas and Ferb?

There are so many questions. Do we bring our girls to Victoria’s Secret and encourage them to replace sports bras with  push up bras? Do we even tell them about thongs?

Schools with uniforms are a huge relief – although it’s possible to look attractive in a polo and khakis, there are no cut off sweatpants with “hottie” blazing across the behind. Maybe there is some middle ground.  We can steer our girls to the fashionable comfort of yoga pants if they hate  jeans.    Tankinis cover better than bikinis. In social skills group, we play clothing bingo to learn all of the words: sequin, spaghetti strap, jeggings, poncho.  I leave the Hollister bag at home, and pull the items out of a laundry basket.  The girls are scared by lacy lingerie, but find the animal prints intriguing.

Formation of an identity separate from the mother is a  critical development stage  for a young woman.  Do we allow our  teenage girls with autism to stay safe in their obsessions with horses and princesses?   How do we keep them safe, but push them to explore a whole new world?

I almost wish I hadn’t gone down that rabbit-hole-and yet-and yet-it’s rather curious, you know, this sort of life! I do wonder what can have happened to me!

(Lewis Caroll, Alice’s Adventures in Wonderland)

Goats, food, and picky eaters

Standard

My guess is that people think that my interest in goats is pretty odd.  So what’s up with the goats?

We spent some time on Saturday hanging out with the 24 baby goats that were born this week.   In the nursery, there were babies just born a few hours before — some frolicking and wagging their tails, nursing — others sleeping in the hay in their adorable little goat sweaters, their bellies still dripping from their just detached umbilical cords, the mommy goat licking at the placenta over in the corner…..

These days so much learning is sanitized,  using only pictures and words.   Sights and sounds, but no smells, tastes, or touches.  No germs or dirt or blood. No soft fur or nuzzling noses.

Our relation to food is distant too. I’ve seen many children with diets consisting  of  Tyson Chicken Nuggets, McDonald’s French Fries, Oreo Cookies and milk. The more adventurous might eat  Kraft Macaroni and Cheese or Skittles. Many children will only eat pre-packaged pancakes and waffles, refusing the ones lovingly made by mom.

All of this uniformly colored and shaped food is different from picking raspberries and sugar snap peas out of your backyard.  It feels odd drinking milk that came from your friend Daisy’s udders, or eating an egg that you gathered and washed.

Picky eating in young children is complicated.  Careful detective work can uncover an underlying cause:  delayed oral motor skills, allergies, reflux, constipation,  strong reactions to sensory experiences, and the drive for sameness in autism can impact eating.  All of these need treatment before you will see any improvement in eating. Children develop aversive reactions, gagging, choking and vomiting if forced to taste or smell certain foods. When a child is backed into a corner over a food, he will ramp up behaviorally.  Children scream, cry,  clamp their mouths shut, turn their heads, and throw food in order to defend themselves.  Parents feel guilty and stressed, and doctors and grandparents give useless advice like “he’ll eat when he’s hungry”.  Parents dread the nightly battle, and see their failure to create a pleasant family dinner as leading to a life of ill health, obesity, and criminality for their children.

Once the underlying problems are addressed, I have been surprised to see how quickly the negative patterns can be reversed with simple food activities.  No forcing, no nagging, no crying.   Just some fun cutting, peeling, grating, crushing, sorting, mixing, pouring…..with no pressure at all to eat. This is key:   it has to be fun, and you can’t have a secret agenda of getting the child to taste the food. Just enjoy the moment and the time together.   You don’t need to actually “make” something, as that will limit your imagination as to what can be done with the green pepper in front of you. See if you can drink water through a rigatoni noodle.  Trying cutting up a potato with a plastic knife, or grating it .  Mix food coloring into little containers of water.  Smell spices and mix the ones you like into dough.   I remember spending hours growing up combining dirt, water and plants to make soups and cakes in the backyard.  But if you don’t like mud, you and your kids can mess with flour, spices and water at the kitchen table.    Grow cherry tomatoes in a container on your deck if you don’t want to dig up your grass.

With one or two sessions per week,  I have seen negative behaviors connected to food and eating gradually disappear, and numbers of accepted foods increase.   Why does this work?  One behavior analyst stated confidently that food exposure/desensitization approach like this can’t work, because the child can forever avoid actually putting the food in his mouth.  So….it shouldn’t work, but… it is working.  Maybe kids end up tasting a little of the food that’s on their hands.  Or maybe backing off from the conflict frees both parent and child from a learned pattern of offer and refusal.  When children start following directives involved with playing with  food, this might create positive momentum. My belief is that kids are more willing to try foods when they can touch and smell them first, and  when they learn how foods change when they are mixed, broken, boiled or baked. Kids start enjoying the contact with food and can try it on their own terms.

I love re-reading Little House in the Big Woods.   The narrative details Laura Ingalls’ daily experiences with her family’s food:  hearing the pig squeal while it is slaughtered, the delicious taste of a toasted pig’s tail, the smell of venison being hickory smoked in a hollow tree,  the sweetness of just-made maple sugar, the squeaky feel of cheese curd in her mouth while making cheese with her mother.

All kids need direct real life experiences, but kids with autism need them…..more. Learning from pictures is clean and neat and orderly, but so much is lost.

Disclaimer: Some children can be treated for selective eating at home, with professional advice and input. Children who are vomiting daily, who are losing weight or not growing, need additional assessment and may need more intensive treatment. Be persistent in seeking help, and don’t accept “watch and wait”.

“There are no right answers to wrong questions.” Ursula Leguin

Expanding interests

Standard

All sorts of kids were obsessed with Silly Bandz a couple of years ago….now they are all about Angry Birds. Shown in pics: Silly Bandz shaped like Angry Birds.

One of the defining characteristics of autism is a narrow range of interests.  Many of our kids develop strong interests which may be a positive force, providing motivation and a way to connect. At other times, the interests become obsessive, and our kids sound like Gollum, muttering  “my Preciousssssss” while gripping their beloved Pokemon or Star Wars figurines.  Legos, Disney princesses, ceiling fans, Sesame Street, Angry Birds, video games, Anime, license plates, game shows, horses, flags, planets, presidents, and traffic cones are among the many themes that attract kids with autism.  Some interests create possibilities for social interaction, while other interests are obscure and create social dead ends, or lead to obsessive hoarding and collecting of objects and facts.

Think about your own special interests, and the special interests of people close to you.  People have a huge range of interests: some people love knitting, scrap-booking, chess, science fiction, bikes, NASCAR, football, bird-watching, Triathalons, World War II, country music…….although we think of these interests as being driven by our personal preferences, they are also influenced by variables such as exposure and social reinforcement.  Familiarity plays a role, as well as the history of  sharing enjoyment with friends or family.

Kids with autism often stick with their familiar interests and may not be open to exploring something new. But they will stand out as different if they still have a Dora lunchbox in 3rd grade, or if they are talking incessantly about Webkins in 8th grade.  They will become outsiders if they don’t know what movies, characters, music, sports and current trends the other kids are talking about. Children with autism may not pick up on the contagion of emerging trends from their school-mates. Sometimes parents are fearful that their own values will be lost if they allow their child to learn about commercially popular topics. But kids with autism are often more influenced more by the adults in their lives than by kids their age.

Lady Gaga accepts the award for Video of the Year wearing a dress made of meat.

Typical kids push their parents to allow them to have access to trendy items and characters, even if their parents are squeamish.   Many parents are not entirely comfortable with Spongebob or Spiderman, and don’t want to spend hard earned money on SillyBandz and Skylanders.  But typical children will learn all they can about popular topics, even if their parents don’t let them actually watch or buy. If other kids are playing superheroes, and your son doesn’t know the names and special powers of superheroes- then he will be left out of the fun. If you are not comfortable with exposing your child to certain violent or sexual themes present in popular culture, you can still teach your child some of the basic information needed to join in. For example, you may not want your child to watch the music video for Lady Gaga’s “The Edge of Glory” but they should be able to recognize her in a picture, and be familiar with the song.

How to help a child with autism to develop new interests?

1) First, figure out what other kids the same age as your child or slightly older are interested in. Develop informants among typical kids the age of your child or a little older. Brothers and sisters of other kids with autism or family friends may be better choices than typical peers that your child interacts with socially (who will think you are weird for asking). Remember that trends often trickle down from older kids, starting in middle school or even high school and gradually catching on with younger children.   Monitor kid’s channels (Nickolodeon, Disney, PBS all have websites) for younger kids, and check out kid’s award shows (Kid’s Choice Awards) to see what’s new. Monitor advertisements on kid’s channels to see what’s being marketed to kids, and look at t-shirts to find out about characters/celebrities/themes. For older kids, pre-teen magazines (J-14, Twist) are an easy source to keep you current.

2) Consider which among the theme/interests that are currently popular might be a good bet for your child.  Think about how to introduce the new theme:  is your child a mover, a watcher, a listener, a toucher? Does your child like very rule-based/structured activities?   Is there a way to introduce this interest in a way consistent with his strengths? Kids avoid activities that are particularly demanding for them and are pulled into  what is easy and successful. Some kids tend to find any movement a lot of work — others are really challenged by sitting still for 5 minutes.   If you want something to catch as an interest, don’t introduce it in a modality which is difficult for your child. Consider strengths and weaknesses in fine motor (i.e. drawing) , gross motor (physical coordination), language processing, speaking, memory, and rule based thinking.

3) Figure out a plan for introducing the new interest. Some do’s and don’ts that may help: do use a non-parent role model, such as a preferred older sibling or a preferred therapist; don’t introduce a new interest when they are engaged in an existing interest; don’t remove a preferred item/interest in order to introduce new interest; do take advantage of moments when preferred items or other amusements are not available; do consider preferred formats such as board games, reading, and electronics, do think about interests which may share themes and structures with existing interests.

4) Keep in mind that some interests may be impossible to establish.  During the elementary years I tried to drum up enjoyment of Hannah Montana, with no success.   I did manage to establish American Idol which continues into this….11th season.   No one else in my family could do more than tolerate watching shows like Hannah Montana or iCarly, but American Idol became a special family occasion, with tracking sheets, dinner conversation, and favorite snacks.

Some more examples of  interests and how parents have gotten them started:

Sports:   One parent introduced baseball through a familiar, preferred format, the Wii, before introducing to actual play/watching games .For a preschool child who loved matching, a parent introduced football through an NFL logo matching game.

Celebrities:  for kids who have histories of intensive teaching programs (ABA/VB) you can insert naming new characters, celebrities, and conversational responses about songs, superheroes (who says “to infinity and beyond?).

Music: it’s easy to move on from Barney by putting popular music on in the car while you drive to therapy and singing along.  You may personally prefer the Grease Soundtrack — but knowing all  the words to “You’re the one that I want”   won’t help your child when the other kids are singing  and dancing to  “Moves like Jagger”.   Karaoke and dancing can be lots of fun on the Wii or Xbox. I always remember how one mom introduced a what became a  fun social activity to her son through dancing the Cha-Cha slide, a good first choice for a child who is strong at following oral directions. Line dancing is also a good choice for a child who is a good imitator.

Don’t give up!  Sometimes, you will put hours of time and energy into introducing a new activity which never catches on.  But with persistence and hard work, you will succeed.

I am  grateful to many parents who have taught me so much by sharing their lives with me.   I am also deeply indebted to Rob Harvey and Andrea Wetzel.

I give you the light of Eärendil, our most beloved star. May it be a light for you in dark places, when all other lights go out”.