Friday, April 11, 2014

Adults vs. Children



Last September I posted about a parent who, at a playground, went against my child's wishes and released a frog that he was keeping in a small container. My complaint in the post was that the parent had decided what was best and taken the frog from my child, without consulting me first. (In all honesty, she didn't really care about my son, just about releasing the frog.)

I didn't notice a comment that was placed after that post, from a 'J. Doe.' The comment was upsetting and I deleted it yesterday when I found it.

Although I later wished to, I can not retrieve that deleted comment. However, in the interest of transparency, the comment went something like this:

'What you did not notice was that when the parent released the frog, your child screamed and threw a stick at her. Luckily, the stick missed. He then went and complained to another child on the swing, who ran toward the parent, intent upon hitting her. The other child's mother ran after that child and stopped him."

I apologize if this is not the exact quote. I am trying to recreate the comment from memory.

My first reaction to this was one of shame (as I'm sure the anonymous commenter intended). My son had thrown a stick at a parent. Although I try to be vigilant, I had not seen it. I'm glad she was not hurt, and if I had seen it, I would certainly have reacted and he would have been given a deserved consequence.

My next (and final) reaction is this:

The actions of my 11 year old autistic child do not make this parent's actions right. We are very open that he is autistic, and he is never left alone on the playground for that reason. When he is upset he reacts first, in ways that a much younger child might, and thinks later.

All more reason not to take away his frog because his having it upsets you, the adult.

I should have been allowed to handle the matter, as I indicated I would. And, my son is not responsible for a different child who obviously was upset enough to try to hit the parent, too.

In fact, the comment underscores my original post, which was about adult parents on the playground making decisions for my child. I allowed him to 'keep' the frog. It was my choice, not the other parent's. I had assured the parent's little girl that I would take care of it, and fully intended to have Matthew let the frog go before we left. This was communicated, and should have been respected.

Trying to divert blame onto a child, or me for that matter, does not change an adult's poor choices.

Susan
www.susancalistri.com

Thursday, April 10, 2014

One in Sixty Eight



The latest report from the CDC contains staggering news. Approximately 1 of every 68 children in the United States is diagnosed with an autism spectrum disorder.

That number climbs to 1 in 42 for boys.

In its March 27, 2014 new release, the CDC stated that autism numbers appear to be on the rise.  The release states that in a sutdy done of children eight years old in 2010 (Matthew's age):

The data continue to show that ASD is almost five times more common among boys than girls: 1 in 42 boys versus 1 in 189 girls. White children are more likely to be identified as having ASD than are black or Hispanic children.

In addition, although intellectual ability varies widely among children with autism:

...almost half of children identified with aSD have average or above average intellectual ability (an IQ above 85) compared to a third of children a decade ago.

This country's priority has to include finding what is causing these startling rates of increase, and addressing the issues as quickly as possible.

Susan
www.susancalistri.com

Thursday, September 19, 2013

Mind Your Own Business (A Playground Rant)

What is it that makes other parents believe that they have the right to impose their world view on others?

Today on the playground, Matthew caught a baby toad, and then later on some girls found a really large toad near a tree.  True to form, Matthew caught the big one, with the idea that he was going to bring it home and make it a pet.  That would never have happened, of course, so when a little girl came up to me and told me that he "had to let it go," I reassured her that he would, and that I would take care of it.

Just a few minutes later, another parent (the girl's mother, I believe) took the jar away from Matthew, and before I realized what was going on, she let the toad go, over the fence where no one could get it again and it would be safe.

Now, I have no problem with parents interfering where kids aren't getting along, or where there is damage being done to life or property.  But this mother's actions seriously angered me.  Regardless of her personal beliefs about whether toads should be caught and kept as pets, she had no right to impose her views on Matthew by taking the toad away from him and letting it go.  I am his parent, and I decide whether he can hold the darn toad or not, and when it's appropriate for him to have to let it go himself.

I wanted to say something to her, but unfortunately never got the chance.  Matthew was understandably upset, and though at the time he was handling it remarkably well (just some frustrated yelling from the tire swing), I thought it wise to leave the playground at that point.  Of course, we would have been able to stay and play a little longer, if this parent hadn't taken it upon herself to decide the right way for my son to act.

Susan
www.susancalistri.com

Friday, September 13, 2013

The Health Insurance Nightmare

A long time ago, when Matthew was young, I had to quit my job to care for him.  As a single parent, I didn't earn enough to purchase health insurance privately, so Matthew qualified for Medicaid and then Healthy Kids.  The coverage and the doctors weren't great, and I had to fight for every "mental health" benefit he received, since at that time treatment for "autism" was not covered, but other mental health services were.

When Jeff and I married, it seemed like a natural thing to leave state-administered health care and get coverage under his employer.  Although his company was self-insured, the carrier was Blue Cross Blue Shield, and the coverage was (and is) great, although costs have gone up significantly in the last two years.

Little did I know, that the nightmare was really just beginning.  Although in 2008 Florida mandate coverage for autism-related services by insurers covering employers with more than 50 employees, Medicaid and KidCare -- the two state-managed health care systems for kids -- continued to refuse to cover some autism-related services, included ABA therapy.  In addition, the mandate did not apply to companies who self-insured, that is, who funded and paid for health coverage for their employees.

I've spent that last two days -- six hours in all -- trying to figure out how to get ABA therapy covered for Matthew.  That therapy is the gold standard for autism care, and virtually the only therapy that can help with resistent behaviors, such as aggression.  Individual therapy, which we tried for two years, has done nothing to help, even though our insurance covered it.  ABA, which may help, is not covered. Our out of pocket for ABA could be as high as $40,000 per year...a cost that we're not able to absorb.

It turns out that neither Obama Care nor the Florida mandate have helped middle-income Americans very much.  While the cost of health coverage -- in the form of premiums, deductibles and co-pays -- have risen astronomically in the last three years, to the point where specialist visits are not covered at all until a $1500 co-pay is reached, coverage has declined.  We are fortunate enough to live in excess of the poverty level, but that fact means that there is no state-provided health care assistance for medical care, which is all income-dependent (including "disability" insurance for children and Medicaid).  Florida KidCare, which is the state administered kids' insurance in Florida -- the state with the autism coverage mandate -- actually does not cover ABA therapy, though if it did, there is also an income limit.

Private insurance is not any better.  To obtain a policy for Matthew, I need to also leave my private insurance, and sign up for a policy with him.  Unfortunately, even policies that provide mental health services only pay a tiny amount for reimbursement, which means that very few, if any, providers will accept those policies for coverage.  In addition, in 2014 when Obama Care kicks in, I will likely not be able to quit an existing insurance policy like Jeff's employer-based policy to sign up for a new, independent policy.

So the upshot is this: "Poor" people can obtain ABA therapy for their kids, by way of state- and federally-funded programs that benefit individuals and families up to 200% of the poverty level, who are disabled or who don't have other health coverage.  "Rich" folks, who have the means to pay for the very expensive ABA therapy for their kids, can pay for that out of pocket if they don't have an employer who pays for that therapy.

But for the middle class, who receive no government assistance (because they can live without it), whose insurance premiums and copays are rising beyond ability to pay and who struggle to make ends meet without help...well, our kids get nothing.  We can't get coverage or afford to buy it.  So our kids are screwed.

Thanks.

Susan
www.susancalistri.com

Saturday, September 7, 2013

Bullying the Fat Kid

A short while ago, a "friend" of mine posted something on Facebook that truly upset me.  After reading it over several times, looking at the photo, and reading the comments -- a couple of which were downright insulting -- I debated with myself what to do.  Ignore it?  Respond?  Unfriend the person? Each seemed like a good response in some ways, mostly because they were quick and easy responses to something that bothered me, for reasons I'll reveal in a minute.

In the end, none of those responses actually seemed like enough.  Instead, I decided to respond in a blog post, and let others make up their own minds.  If you know me, you know that generally I tend to use FB for social interaction and not for political/social agendas (other than my passions, autism and education).  This bothered me enough that I'm going to break that rule.  Right now.

Here is the photo and text of the interaction, with names and profile photos kindly redacted:

MY FRIEND:
These two tubby women won't let me pass....
Like ·  ·  · 3 hours ago via iOS · 

Personally, I think all of these people should be ashamed of themselves.  They are the reason that some children think it's okay to call other kids "fat" or "stupid" on the playground.  I'm sure they thought it was just a joke, you know, someone to poke fun of on a boring Saturday night.  Two fat women they don't know, just walking on the cattle...er, people...mover.  What does it matter if they are someone's mother, grandmother, daughter?  What's not funny about fat women walking around?

I didn't find it funny.

Susan
www.susancalistri.com

Wednesday, September 4, 2013

Summer, Done and Gone

North Carolina, atop Mt. Craig.

September. As a kid, I used to associate this month with Indian Summer, back-to-school and cooling weather.  (Now that I'm in Florida, it's more like the peak of hurrican season and another month of summer...but I digress.)  Summer was done and gone, another memory made of hot days, warm evening breezes and long vacations.

We had a great summer this year.  A long, active trip to North Carolina mountains with family and lots of hiking was the highlight.  I think even Matthew had a good time, despite the fact that he hates hiking.  (Of course, if we go "sightseeing" in the mountains, or just take a walk to look at bugs and lizards, he enjoys that.)

As with most years, at the end of summer I have a tendency to look back at summers past, and compare. With all of the work we put into the last year, with homeschooling and therapy and social skills training, have Matthew's behaviors improved at all?  Has he learned new skills, improved his coping strategies, or achieved the goals we set for him?  Has maturity helped him to overcome some of the anxieties and fears that are so much a part of his way of thinking, or helped curb some of the impulsive behavior that can make life so difficult for him, and for us, at times?

Sometimes, comparisons are dangerous of course.  Examining a life, expecially one so young, and boiling it down to traits, strengths and challenges, can narrow your view such that you don't see the child behind the traits.  And if you don't see the improvements you wanted (or hoped) to see, it can feel like a let down.  So why do it?  The answer is obvious.  As the parent of a child with a social disability, I constantly look for ways that the constraints of that disability have been mitigated or improved.  I look, and take account, because I have hope.

This year, as with past years, improvements abound, while some challenges remain constant.  Classroom and group settings are the primary challenges for a number of reasons, including the noise, the constraints related to authority, and the need to compromise with others (in ways such as turn-taking, cooperation, and simple interaction). Relating to others presents its own set of difficulties; while typical children learn to relate to each other through the osmosis of hundreds or thousands of interactions, children with autism don't, at least not easily and not in typical ways.  There continue to be incidents with other children, and with adults, that tell me that Matthew has not learned, yet, what the boundaries are to his behavior as it relates to others.

On the upside, maturity continues and it appears that some small lessons, long in the teaching, are being absorbed. Matthew called a friend a couple of weeks ago, to ask how his first day in his new middle school went (and to talk about his favorite video game, at length).  He has taken over caring for our pets (by feeding them at least once each day) and most days remembers to get to all of them.  LOL.  He has decided that he wants to be a herpetologist, with the goal of starting college early (even though he won't actually study his schoolwork).  On occasion I do hear an "okay, Mom" from him when asked to do something - I nearly fell over in surprise the first time - as opposed to the constant arguing that makes up his repertoire of conversation with me.  Other, small changes, not so obvious, continue, while we look for more answers, more help, more hope for those behaviors whose solutions have thus far eluded us.

It may be that there are no answers, other than maturity and the control that comes with it, but at the end of every summer I will continue to seek those changes that tell me there is hope.  And at the same time, I won't forget to see the amazing boy who lies at the heart of what I do.  The boy who is right now dancing a little jig in front of me, hoping to make me laugh and to see him for the smart, funny kid he is.

Susan
www.susancalistri.com

Saturday, July 13, 2013

What To Do? (Literally)


This week, Matthew surprised me by asking to return to middle school.  After discussing the possibility with him (and contacting a specialized school in Tampa that I have had my eye on for him), he and I figured out that it was not school that he missed, but the peer interactions.  He's a very social only child, with an intense need to be with other kids; unfortunately, it's been difficult to provide those interactions for a variety of reasons.

Most experts will tell you that social skills training is one of the most important therapies for young people with autism.  Social interactions become more difficult as autistic children mature into teens. The differences between the autistic youngster and his or her peers becomes more obvious at older ages, and typically-developing teens may not understand, or care, why there are differences.  For many teens, differences in peers are like childhood cooties: if you got 'em, they don't want em.

Although Matthew has one "best" friend, a typically-developing boy he has known since pre-k, he doesn't really manage to make and keep other friends, even at co-op.  His behavior -- much younger than his age -- tends to be overly emotional and loud, primarily because he is easily frustrated.  He has an intense need to control his surroundings, including interactions with peers, something that not many peers can understand, or enjoy.  He is extremely aversive to competition, because he knows that winning matters too much to him and he melts down if he doesn't.  As a result, he avoids many possible interactions -- including laser tag, team sports, and game-playing -- so he doesn't react in a way that he knows is not socially acceptable.


While I laud his understanding of his own temperament and limitations, his withdrawal from these types of interactions is limiting in terms of making friends.  In reality, most of these unwanted behaviors lessen as he gets to know someone and become used to them (and they to him)...but most peers don't take that long to get to know him.  Many older children and teens, especially boys, thrive on competition, so Matthew's aversion to it naturally narrows the number of peers he can socialize with (and makes it virtually impossible to find social groups) for him.  He does better getting to know others one-on-one, rather than in a group setting, but it's virtually impossible for this to happen unless I make a "play date" for him (which at age 11, is getting to be too "young" for the kids his age).

I've spent hours trying to find arenas for him to meet and interact with other kids, with mixed results.  The vast majority of activities for kids in the community are sports-related: soccer, baseball, swim team, and football.  I have found a couple of activities that I think may be a decent fit:

Tampa Bay Fossil Club: No competition here, though not finding fossils when one expects to find them can be frustrating.  There is only one meeting each month, with an expert speaker.  Not sure he'll like that. He may find like-minded kids on the twice-monthly field trips though.

Prodigy Art Classes: Sponsored in part by USF, these music and art classes are held at the YMCA a couple of times each week.  I'm hopeful that there will be other kids, and no competition.

Swim lessons: The YMCA near us offers swim lessons, without a team-competition focus, for kids up to age 12.  We don't have much longer for this age-wise, but hopefully he will mature in the next couple of years to where he will join the swim team, even if he doesn't compete.

Bookaneers/Lego Club at the Library: Book club with a focus on his age group, and a social Lego-building club, both at the local library .  Not sure about this, but we're going to give it a try.

Gaming club: A couple of parents at the co-op have tried to get one of these going, but it's never taken off. If it does, it's something we may try (or I may start a south county group).

I'm still looking, and hoping others have ideas.

Susan
www.susancalistri.com