How I Stopped Pitying My Child

I had to hire a babysitter to I could go pee, so Dylan (son #2) could survive until his first birthday.  Tristan had claws like lobsters and every time, just walking, Dylan would toddle over to big brother Tristan to steal one of his lined-up plastic animals, Tristan would pinch his cheeks.  Dylan became our star therapist always interrupting Tristan’s autistic trance, but the downside was that Dylan had continual bloody cheeks for about two years. 

One morning I plopped Dylan up on the counter to apply his daily dose of antibacterial cream to his cheeks and it occurred to me that we needed to change course and I was enabling Tristan to behave poorly because I pitied him.  At four years old, Tristan blabbed like a six month old; when he wanted a cracker he would stand at the cabinet until I got him a snack.  We were working on, “cracker, please” and if I said it, Tristan would repeat. 

After the first few months that Tristan was diagnosed with autism I let all the “professionals” take over the responsibility of raising my child.  They had their P.H.D.s in speech therapy, physical therapy, childhood development, and occupational therapy and in my sleep deprived mind they were the best choice to parent Tristan. 

Like Sleep Beauty being woken with a kiss, I was shaken out of my stupor with words from a good friend and established parent of five who also just so happens to be a developmental pediatrician, “Angela, you know that some of Tristan behaviors are typical, right?”  I shot back a glance and said, “What do you mean?”  He went on to explain that kids are first kids (the autism was second) and that they need structure and discipline. 

This concept of Tristan having typical behaviors that all toddlers and preschoolers flirt with like hitting, pinching, biting, and tantrums at first made me angry (OH, so now I have to not only deal with the autistic characteristics, but I have to also parent his typical behaviors!) and at the same time relieved for having Tristan have a part of him that was like all his peers.  

Over the next few months we (our team including me) made structure and consequences for good and bad actions a continual plan we were all working on.  If Tristan hit another child, he had a time-out (see blog post for tips for time-outs), but for every negative interaction we balance it with five positive interactions.  You can easy slide into (and I still do) correcting or disciplining and not recognizing when your child doesn’t hit or pinch or says, “Mama, cracker, please?”  The balance is the key to growing your child into a responsible older child that understands boundaries and respects others.

Finally, the last piece is consistency and practice.  Tristan needed more time to practice how to sit on the step for a time out.  We began with many visual cues and a limited amount of time (again, really you should read this blog post).  Then we all practiced praising when Tristan deserved being rewarded (don’t give out positive praise too quickly).  The whole process still continues and we are still practicing but not at the “boot camp” level; now it is integrated into our everyday life.

Paying for autism, can we really afford it?

Disclaimer:  My desire is to keep Parenting Autism focused on parenting subjects but often parenting a child with autism and politics blur the lines and I have to discuss the boarder implications of policy decisions.  Thank you for your continued support.

Over the last few months I have been working with a group of parents and professionals (VT CAIR) on lobbying the Vermont legislature to not repeal the autism insurance reform law that passed and  was signed into law  last year.   ACT 127 (aka Autism Insurance Reform) mandates insurance companies and Medicaid to pay for autism services (behavioral therapy, occupational therapy, physical therapy, speech therapy) for children 18 months old to six years old.  After last session we felt good, we got some needed legislation passed with some concessions but that is politics, right? 


Then we went into the current session (2011) with a new Democratic Governor and we thought, great!  ACT 127 was ready to expand to include individuals above six years old, but we got stopped right on the State House steps.  Governor Shumlin and the Democratic house and senate had not put the money into the budget to fulfill their Medicaid commitment and their best option was repealing ACT 127.  We said no, no, we will compromise and this year we will take just private insurance ($.70 a month per premium holder) and then next year we can implement Medicaid coverage.  Even that got months of debate.


This is where I have problem, whether it is a political, moral, spiritual, or intellectual problem I am not sure, you can decide.  Here is my dilemma: for the price of an apple every month we decided children with autism (and their families) are not worth the medical treatment they deserve and need. 


How can this happen in a liberal, New England state in the richest country in the world?  I don't know.  The political, cynical side of me understands that the vulnerable are always targeted in tough economic times, but the hopeful side fights back with confusion.  How did our nation, the great "melting pot", arrive here, where children are not getting medical care they need.  We are all responsible because for far too long in this country we turn the other way and say, "well, that's not my problem."


We get consumed with our busy lives and end-up walking around with blinders on, not seeing that our neighbors need help.  This is not a Vermont problem.  Accessing proper treatment for children with autism exists all across our nation.  Some states are slowly passing legislation to mandate insurance companies to pay for autism services, but more needs to be done.



The longer we wait the higher the price tag.  Not just in the children getting denied access to healthcare but in real dollars and cents.  According to the Autism Society of America, " (the) cost of lifelong care can be reduced by 2/3 with early diagnosis and intervention."  As a society we are making a choice to limit opportunities to children with autism and to assume the skyrocketing cost of adult care unless we look at our fellow citizens and take care of each other.

Related blog post:  Vermont State House Passes Autism Insurance Bill

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:

1.      

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.

2.      

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?”

3.      

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. 

4.      

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

5.      

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?  

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.

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). 

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.