Tuesday, November 30, 2010

Top 5 Tips to Help your Child Avoid Bullying

Avoiding bullying can take a toll on not just your child but the entire family.  Kids with autism spectrum disorder (ASD) can be especially vulnerable to bullying, so beginning the bullying talk early can be beneficial to making sure your child can advocate for himself and is not be prey to the bully.  Here are five tips to help your child dodge the bully:

Give Examples.  Explain to your child about what it looks like when people are making fun of your child or being mean.  If you witness someone teasing or being cruel to your child point-it-out to your child.  For example:  “When Joey said you are a nerd that was not nice.”  Often children with ASD don’t know when people are being unkind to them, so you need to teach what callous behavior looks like and then you can start with the next step.
Open the communication lines.   Have frequent conversations with your child about what is teasing, what is bullying, and what is a friend, and then ask questions like “Did anyone get in trouble today?” or “Who are your favorite friends?”
Help Your Kid Find His Group.  When kids have friends and travel in a group they are less likely to be targeted by a bully, so encourage your child to find his cliché.  Join clubs or sports that your child likes and try to establish friendships. 
Teach You Child How-to Stand-Up to the Bully.  Teach your child how to leave the situation without too much harm. 
·         First don’t engage (no talking or physical behavior, it will just encourage the bully).
·         Walk quickly away (don’t run, they will chase).
·         Find a trusted adult to tell
Talk to other parents and teachers.  Avoid potential problems by talking your son/daughter’s teacher and other parents at your child’s school.  Knowing the potential bully or his parents can help prepare your child to stay clear of the path of the bully or help you defuse the situation.   What is the climate at school?  Who are the kids that are the aggressors?  

Tuesday, November 16, 2010

Stay Fit while Getting Centered

“What happened to Tristan yesterday?” asked his case manager at school. 

I tilted my head with a dash of confusion and slight terror as Tristan has gotten himself into some tricky social situations recently and said, “What do you mean?” 

As her eyes widened, she said, “Well, Tristan was so focused during our sessions today.  No flopping on the floor or fidgeting in his seat.”

Suddenly I knew what she was talking about; Tristan had swum the night before.  Not dawdling around the pool with us, but swim team.  Seventy-five minutes of working on strokes and swimming laps. 

Often kids on the spectrum (my kid included) prefer play a video game to getting their heart pumping.  The rules can be difficult to follow and interacting with peers— well, is tough and most youth activities that keep you “lean and cute” are team sports.  All kids (rather all people) need regular exercise to stay healthy mentally and physically, so here is a list of some sports/activities that kids on the spectrum have enjoyed:

·        Swimming:  Try a local non-competitive swim team to learn different stokes and to get your body moving.
·        Ice Skating:  Take a US Figure Skating group lesson.  Some kids love the gliding on the ice and feeling the wind on their faces.
·        Downhill Skiing: Again the wind on the face is loved by all that crave sensory stimulation.  Schedule a private lesson on a beginner slope to learn how-to turn and stop.
·        Biking:  Once you get the technique down, biking can be freedom while working your muscles.
·        Martial Arts:  Discipline and moving your body are pieces to martial arts.
·        Quidditch:  This is a team game, but for Harry Potter fans (like Tristan) it can be trilling.  Check your local Parks and Recreation for Quidditch teams in your area.

Last tip:  inform the instructor that your child has autism and tell them how best your child learns or what to do with unwanted behaviors.  Remember they might not know what autism is or how to help your child, so give them some clues and help.

Thursday, September 9, 2010

Snap that Umbilical Cord

For many months, perhaps even years, I have been preparing for this day.  I am not birthing a child or graduating from school or giving my vows of marriage, I have done all that, no this afternoon I cut the umbilical cord.  Not the one Peter slit, but the cord of dependence that has been stretched to the point of breakage.

Over the summer Peter and I began leaving Tristan home alone while we ran two blocks to pick-up milk and bread.  Just like teaching Tristan how-to communicate or what social cues look like, we have coached Tristan in being responsible while being home alone.  Being home alone is one thing, but now Tristan will be walking from school to the library with friends.  Two blocks, one side street to cross, and hanging-out with the others kids that is what I will face this afternoon.

My friend, Diana, said you could spy from across the street.  As much as I want to jump behind the bushes and experience Tristan’s independence with him that would be just stretching the cord further not snapping it.  We moved to this town of 8,000 residents so our children could grow-up walking to school and to the store.  In the 1970’s I walked to kindergarten with a friend, without a parent.  Today, crime is lower than the 1970s and 1980s and I still have ping in the stomach every time I think of Tristan strutting down the sidewalk.  

Just like the sadness and anxiety of weaning a nursing baby or leaving your kindergartener at school, plunging your child into the world without you is another milestone toward adulthood.  The sadness comes with the realization that you can never turn back.  It is not like I can begin nursing my eight year old again as much as I might miss the cuddling, I really don’t miss always carrying a baby, so we are moving forward and growing (hopefully not horizontally). 

Wednesday, September 8, 2010

What to do with a Public Meltdown

All the lunch-goers at Faneuil Hall in Boston probably expected a peaceful lunch while people watching from their cafe tables.  Instead they got Liam in total melt-down mode for about as long as it takes to order drinks and your meal, then to have the chef prepare your burger and fries and for you to consume all of it.  I should have seen the melt-down coming, Liam had the right forecast-- barely any sleep the night before, it was lunch time, and we were in Boston, three hours from our house.  But the sunshine and seventy degree weather blinded my perspective.

For 45 minutes I sat with Liam on a bench while he tried to stop screaming, "I want new, green Crocs."  I wished he would stop screaming, kicking, and hitting, but hoping and crossing all my toes and fingers did not seem to help.  So, I pulled-out my parenting toolbox right-on one of the busiest spots in Boston and went to work.

Even though I am writing about Liam, who is typically developing, kids are kids first before any diagnosis (like autism) and all kids have tantrums and sometimes they have meltdowns.  Tantrum vs. meltdown:  I think of tantrums as a power struggle (I want this toy and you will buy it or I will scream) and meltdowns are a complete loss of control.  There is no reasoning or distracting, the meltdown just has to run its course.   I bet most of these melt-downs happen in the public eye.  

As a parent you probably know what triggered the meltdown-- a sound, plummeting blood sugar levels, lack of sleep, a sensory overload, or all of the above.  So, what do you do in the middle of a busy tourist destination with a screaming, kicking kid?
  • First, check-in with yourself-- are you calm?  Have you lowered your voice?  Are you remembering to breath slowly?  Allow yourself to pause and not be in a rush.
  • Second, forget about the on-lookers!  Either they are empathic (I have been there with my child) or annoyed and probably have never raised children.  Focus on your kid, remember this can be a teachable moment (self regulation).
  • Third, find a quiet, empty space for your child to sit and place him there. 
  • Tell him why he is being place in the spot (I use the same language as at home-- break spot or time-out spot).  Remember to keep your language simple and clear, like "Liam, you can get up when stop crying, kicking, and hitting."
  • If your child gets up or tries to make break-for-it set him back down in the "break" spot without any words.  And keep doing it, don't break and give into the meltdown... you have come so far, don't give-up now.  Remember you are teaching emotional regulation, once your child calms then you can move-on.
  • Now this is the hard part, you need to WAIT until they can get themselves together and out of meltdown mode.
  • Finally, when all is calm (or at least somewhat reasonable) hug and move-on to getting sleep, food, or a less busy environment.
We all have our moments when life gets to overwhelming and we break, however most adults have learned strategies to cope with their own meltdowns and that is what children need to practice.  Think of meltdowns as practice in emotional regulation and the more your child practices the better they will be in control of themselves.  

How Temple Grandin Changed My Parenting

I posted a link to a TED talk that Temple Grandin gave in February on the Parenting Autism Facebook fan page.  Then I asked members what they thought of Temple and the responses reminded me why Temple Grandin changed my parenting.

After Tristan was diagnosed with ASD, I drove right to Bear Pond Books 
(our local book seller) and guess what they had one copy of Thinking in Pictures.  That night I read the book from cover to cover and woke-up with a different thought about how I parented Tristan.

We already knew that Tristan responded to visual cues more than verbal cues, but Temple's description of how a visual thinker interprets the world gave me a greater understanding.  I am a verbal thinker, you say "school", I know what you are talking about, my brain does not flip through a Rolodex of pictures of all the schools I have ever seen.  But I think Tristan does. 

So, I began to shift my thinking to how Tristan may think.  The first step we took was to give Tristan more time to process verbal language.  If you are a visual thinker, flipping through all those pictures could at first take longer than a person who is a verbal thinker.  What we found is that if given a little longer to process Tristan did respond verbally.

Then I decided to make Tristan's world more visual with picture boards through out our house (and at school) to provide some independence to Tristan.  He could access the information he needed about dressing, bathing, brushing teeth, getting ready for school, daily schedules, and undressing.  Ann, our SLP (speech language pathologist), even made me a bracelet with tiny pictures dangling off so when we were out-and-about I had pictures to use to communicate with Tristan.

The bracelet became essential in diverting tantrums or when I needed to communicate quickly with Tristan.  Knowing how Tristan thought leaped me forward to understanding what skills to cultivate in Tristan.  Tristan spends hours building with Legos or reading comic books.  And in kindergarten Tristan began making his own books, first without words then now with words and even a storyline.

The most valuable information Temple gave me (as a parent) was what she calls the "1950's parenting".  How I interpreted Temple's words was that I needed to be direct with Tristan.  For example, if Tristan is talking to his classmates at lunch about a comic book and all his friend's non-verbal cues are saying they are not interested.  I would say, "Tristan look at all your friends' faces, they are not interested in Spiderman, ask them what they want to talk about."  Also, if Tristan doesn't respond to a person greeting him, I would position Tristan's body to face the greeter and have Tristan respond.  I think of all this as practice for Tristan.

Saturday, April 17, 2010

Time for a change...

Today is a new day... at least for my blog.  For last three years I have been blogging on Blogger and I have finally made the switch to adding these words directly to my website.  I think it will be easier for readers to scan the Parenting Autism website for new stuff while also keeping up with my blog.  Two different website to maintain made my head spin which sometimes resulted in lack of writing. 

So, if you vow to come back here and read my blog, then I promise to write more often.  Got to run after some little boys.  Hugs, Angela

Wednesday, April 14, 2010

Parenthood... Is it good or bad for the autism community?

I love to junk-out on TV.  That doesn't mean I actually get to watch mainly due to the fact we don't own a television.  Like many other families with kids on the spectrum, we gave away our T.V. after we caught two year old, Tristan watching static.  I guess now not owning a tube doesn't stop you from watching shows online which I do a few times a week, but I do find myself having to schedule and prioritize. 

Last night I found myself watching Parenthood once again.  Parenthood entertains and keeps me coming back week after week.  At first I wanted to see how the writers and actors would incorporate the Aspie character, Max, but now Parenthood draws me into the drama of the relationships and struggles families face.

Sure, Parenthood is a Hollywood version of real life and always seems to end the hour on an upbeat.  Like last episode when Max received his first home behavioral services and by the end of the show Max had his first play interaction.  Not so realistic, but at least the mainstream gets a glimpse of the challenges and joys faced by a family affected by ASD.

Frankly, the most misleading part was in the second episode when Max, who is highly functioning, was asked to leave public school and the parents agreed.   First Parenthood sent a message to their viewers that parents are suddenly able to enroll their child in a private school and that they were able to dig up the money to pay.  But, the most disturbing part of the story line is that the writers erased the last thirty years of special education law that clearly states that all students are entitled to an education even if the school district must make accommodations.  

Instead of portraying parents working with their public school to create an educational environment conducive to learning  for their child with ASD, the writers took the bland way out.  Often advocating for your child within the public school offers some great stories that the Parenthood writers could have pulled from.  Perhaps the writing staff should call some parents with kids on the spectrum to see what everyday life is really like for families.

With that said I guess I will sit down tonight and watch this week's episode and I am sure I will be entertained. 

Tuesday, April 6, 2010

Blueberry Yogurt, really?

Tristan added a new food to his diet this past weekend.  Ya, we are celebrating because I can't even remember the last time Tristan added a new food.  I think it has been years.  Usually, Tristan discards a food item from his shrinking list of edibles, but his time he added blueberry,  Horizon Yogurt Tuberz.  Blueberry!  Can you believe it?  I can't, since Tristan's only fruit and vegetable he has eaten for the last 4 years has been hard (no bruises), green apples.  Maybe a red, Macintosh once in a while, but only if hunger hits and we are in an apple orchard.

I can just hear the screams, you are just dying to know his food list.  OK, here it is:
      • Manghi's whole wheat rolls
      • Chocolate Koala cereal, no milk
      • beef as a hamburger or in taco corn shells
      • Vermont Cure breakfast, maple sausages, but only at lunch time
      • Green apples
      • Corn chips
      • Plain potato chips (if we let him)
      • Pretzels
      • Veggie Bottie
      • Plain pasta with soy sauce
      • Brown rice with soy sauce
      • My homemade peperoni pizza
      • Green apple jelly beans (when let him)
      • Beef hot-dogs no ketchup
      • Fries
So, there you had it, the fifteen items Tristan will eat.  His occupational therapist and a nutritionist have been working with Tristan for about five years to expand his menu choices with minimal change.  He plays with food and smells different items (which he loves), but until now the therapy has just improved Tristan gag reflux.  Sometimes Tristan will even try to taste the food, but often it ends in a tantrum.

I have a theory on the Horizon Yogurt Tuberz, Tristan can't see what he is eating. In addition the texture is smooth.   No lumps, bumps, and-- no chewing.  I have tried freezing shakes or fruit to make Popsicles and Tristan refused, mainly do to how it looks.

Perhaps I will wash-out a Tuberz and insert some pureed carrots or strawberries and surprise Tristan.  He would probably catch-on to my deception, but it could be an idea. 

Wednesday, February 24, 2010

Kill or not to kill

When socialite and millionaire Gigi Jordan feed her eight-year-old son with autism a lethal dose Ambien and Xanax, the autism community once again failed. Last night sitting on my bed, phone to my ear chatting with a New York reporter about the latest mother-homicide related to autism and the reporter's words sent a chill down my spine, "...this is such an unusually, sad case."

Not really. Days after police were barging into Jordan's $2,000 a night hotel room, a grandmother in Coney Island locked her 11 year-old grandson with autism, alone in their house that caught on fire and killed the boy.

The unusually situation is not that a millionaire, mother thinks autism is causing her son pain and she decides to end his life and suffering, it is that we don't read about it or talk about it. All to often parents end parental rights or murder because autism can drain hope and reality right out of parents (of course, with the right dose of sleep deprivation). The one-time, quick-fix autism cures don't work and lead parents and grandparents down a path of despair when their child doesn't get 'better'.

Add the lack of federal funding for respite care and proven, effective interventions and parents can find themselves spiriting down the road of giving-up their child to the state or even murder. I am not condoning what these two women did or others who act similarly, but we are not giving parents practical resources to help develop a everyday that the whole family can live with.

Foremost parents need to value their own physical and mental health and know the warning signs that life is getting desperate and help is needed. Then where to go and how-to get help. Friends and family members also need to evaluate the health of primary care providers (mom and dad) to ensure everyone is getting the respite they need.

Growing a child with autism into a happy, productive adult takes many layers of family members, professionals, educators, and care providers over the lifespan of the individual.

Friday, February 5, 2010

Time-Out Strategies

Yesterday, I was chatting in the hall at school with a mom (of kid with autism) about discipline and guess what? She admitted that she only disciplines her typically developing children, not her child with autism. Since this was the third conversation about disciplining kids on the spectrum in the last three days, I thought this would be a good place to discuss the ins and outs of discipline strategies.

Today, I am just going to talk about how to effectively use a "time-out" for young (1-5) children with autism. First, if your "time-out" strategy has failed in the past, change the name and place (we actually call our time-out, break time) for a fresh beginning.

Set-up your time-out chair. Whether you use a chair or a bean bag or a step, keep it consistent and easy for your child to take a break and re-group. For children with sensory issues which makes sitting more difficult, try placing a Gymnic Disc in-between the child and the chair; it will give some sensory stimulation while allowing your child to sit longer.

If your child is a visual learner take a picture of your child sitting in the time-out chair, print out the photo, and tape it to the wall just above the time-out chair. Write "Time-Out Chair" below the photo to add another support. The photo will reinforce the proper behavior and remind the child why they are taking a break.

Free the time-out area of distractions; for example: clear toys away, turn-off the Ipod or the T.V., and allow your child time to re-group, so he will be available to make better choices.

Use a visual clock with timer so your child can see how long they need to sit. Typically one minute for each year of life, but children with autism might need to practice to sit in a chair for five minutes if they are five years old. So, begin with one minute and work toward the five minute goal. Keep the clock out of reach of the child, but in visual proximity. Now that your time-out chair is set-up and ready for use, now what?

When we are discussing time-outs (or discipline in general) often parents are ones that need the rules. We can get emotional and forget that we are teaching proper behavior and explode into a fast talking, babbling fool that our children can't understand. Here are some guidelines to follow for success:

* Be patient! Re-frame the situation. For example: Your child wackes you on the head with a plastic hammer and it really hurts and all you want to do is scream and jump up and down. Instead, breath, count, leave the room for a moment; whatever it takes to calm yourself down. Remember you are modeling proper behavior.

* Get down to your kid's level! That is right— bend on down, sit on the floor, slow down your rate of speech, and in the least amount of words give them a WARNING— "No hit mommy or time-out."

* Focus on your non-verbal communication! If you want your child to know you are mad, show them mad on your face, and in the tone of your voice. Slow your rate of speech, lower your voice tone, and put on your mad face.

* Follow through! If you have given a warning and the undesired behavior continues, it is time for a time-out. No excuses, it is teaching time.
  • Sit your child in the time-out chair.
  • Explain why they are there, for example "You hit mommy."
  • Tell them to sit in the chair.
  • Set the timer for a reasonable amount of time; remember you may have to increase the time as you practice the time-out.
  • If your child gets up, return them back to the time-out chair without using any language.
  • When the timer has rung re-explain to your child the reason for the time-out.
  • Hug child and go play!
* Start young! Kids need practice and the sooner you develop a discipline plan and stick to it, the better. Be proactive, think of teaching proper behavior instead of correcting poor behavior. Remember kids with autism are FIRST KIDS so like any other child they need boundries, consquences, and understanding.

Wednesday, February 3, 2010


I am back! After four months of healing from falling fourteen feet off a ladder and fracturing two vertebra and shattering my heel, I am beginning to reshape my life and getting back to writing on the Parenting Autism blog. My first professional step forward... many other steps taken (literally), with help of physical therapist, I am learning to re-walk.

While laying on the couch (my bed for eight weeks since I could not climb the stairs) my parenting plan of organic, whole foods and after-school activities like swimming, Lego club, art class, gymnastics, and karate exploded into hours of watching movies and eating cereal and toast for breakfast, lunch, and dinner. Our after school plan was simply:

1. Roll my walker with one foot while sitting on the bench, that clearly states "Warning DO NOT attempt to sit on seat while moving", from couch to front door.
2. Get coat on and open door.
3. Roll walker out on the front porch and sit in the frigged, Vermont Fall.
5. Wave at kids and moms that are helping Tristan and Dylan off the bus.
6. Kiss Tristan and Dylan.
7. Inquire about their school day; trying to pry-out more than what they ate for lunch.
8. Open door and roll back into our house while reminding the boys to pick-up their backpacks, coats, and shoes off the floor, so I can get back into the house.
9. Sit at the door, yelling, "I can't get through with your stuff all over the floor."
10. Roll through the living room dodging any dropped toys, books, food, and collapse on the couch.

The above mission would take me about forty-five minutes to execute. After an afternoon nap I would lift my head long enough to help Tristan and Dylan with homework-- no executive functioning plans on how we would set-up our afternoon, straight and simply-- survival.

At first, the voice inside my head screamed that I was ruining my children-- Tristan would slip into his old patterns of reciting entire movies and only eating Veggie Bootie and pepperoni, Dylan would not learn to read by the end of kindergarten, and Liam since he was only two (almost three) would turn into a swearing, punching, kicking preschooler with the corruption of Stars Wars and Harry Potter.

Well, I can report four months later that Tristan, Dylan, and Liam did not spiral down into children that were feared by me and every other person. Instead, Tristan learned how to put the dogs "away" in their crates (so, not to eat their food) and how-to pour cereal and milk into bowls. They all learned to put away their clothes, dress, bathe, and brush teeth independently. Liam learned to sleep next to me instead of with me.

And I learned more in the last four months about life than in my prior thirty-five years and I hope to scribble some of those thoughts to you.

Last Thought:

Pause your life, right now. Take a deep breath into your soul. Thank yourself for all you have done and inquired. Be grateful that air can pass through your lungs and that you have this moment. Namaste.