Tuesday, June 7, 2011

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.

Monday, May 16, 2011

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