Wishing and Hoping and Praying…

Question Mark Graffiti by Bilal KamoonRecently, I read a blog post by Autism Daddy, and response to that post from another… all centered around the old debate of whether or not you would take your child’s autism away if you could.

And I didn’t respond.

This has become a hotly contested debate, replete with comments like “Anyone who says they haven’t ever wished their child didn’t have autism is LYING!”

Here’s the thing.  Autism is a spectrum disorder, and often co-morbid with many other diagnoses.  Those with children on the severe end of the spectrum probably voice this wish every single day, and who could blame them.  And maybe there are some who even wish it every day for their child on the less-severe end of the spectrum.  You know what?  That’s OK.  That just hasn’t been my experience – it’s not me.  Never has been, and never will be.  Nor do I judge anyone else’s feelings – they are all valid, even if I personally think following this line of thought is a monumental waste of time and energy.

I believe that everything I have experienced has made me who I am today.  I will admit that there are times I wished I had never been married to the ex, but they are extremely fleeting because my next thought is, “But then I wouldn’t have The Boy.” And that ends the line of thought right there, because I couldn’t imagine my life without him, and don’t want to.  I also wouldn’t have met The Man, and wouldn’t be who I am and where I am today without experiencing that relationship with the ex.  Ultimately, it has made me a better person, even if I was miserable for most of that marriage.

And I have always been one to handle a situation rather than freak out.  Instead of running around like a chicken with its head cut off in an emergency, I have always tried to quickly lay out a plan.  “OK, that happened, now here’s what we do…”

I can’t imagine my son separate from his autism.  If you took it away tomorrow, I would have a stranger living in my house.  I doubt he’d love Disney movies as much as he does, and he might prefer playing XBox to drawing and making videos and riding his bike like he does now.  He wouldn’t be as innocent, or as willing to hug me.  Would he even have the same sense of humor? Who knows?  Not me.  But he would be different.  I like him the way he is.

That doesn’t mean that our experience with autism is all rainbows and lollipops, and you know this about us if you read this blog at all.  We are lucky not to experience too many meltdowns, but when we do, they are catastrophic.  We deal daily with issues like “How do we get him to not bring his iPad into a public bathroom, and record video while other people are using it?  How do we get him to understand that saying, ‘What IS it?’ with a sarcastic tone of voice could be thought of as rude? How do we help him get over this obsession with toilets, for God’s sake??”

I have said before that I would love to know him better, and that’s my biggest frustration with autism.  I fear for his future like every special needs parent does.  And I fear society, and how he will be treated as he gets older, and as more expectations are placed on him to conform.

But never have I wished away his autism.  It is the honest truth.

And never will I judge another parent who has.

Like a Smack in the Face

It happened at about 8:15 this morning, and as I write this almost 12 hours later, I am still in disbelief.

The Man called me at work and asked if I had a minute to talk.  “Uh oh,” I thought.  He proceeded to tell me about his encounter with the mobile home park owner where my parents live.

First, some background.  The Boy goes to Grammy’s during the day while we work in the summer, and gets dropped off there after school during the school year.  He likes to walk along the drive that runs by in front of the trailer, always barefoot.  When cars come, always extremely slowly because a) they are mostly old people who live there, and b) there are 101 speed bumps on the half-mile of drive around the small park, he gets off the road to let them pass.

Today, the owner told The Man that we need to keep our “retarded kid inside.”

Yup, you read that right, word for word.

He then backtracked and told The Man that he couldn’t “play” on the road.  He could play on the empty lot at the bend in the road a few doors down, but he couldn’t play in the road because he had gotten complaints, and he had almost been hit by several cars.

Ironically, a sign like this is posted at the entrance to the park...

Ironically, a sign like this is posted at the entrance to the park…

Seemingly unaware of how many laws he had already broken, he went on to provoke The Man even further, and continued to use the r-word even after The Man had corrected him.  I’m amazed this guy didn’t end up in the hospital.  The Man handled it like a rockstar, and ended the conversation before he could get into trouble.  He, too, is still livid 12 hours later.

I got off the phone with The Man and realized I felt like I had been punched or smacked in the face.  I read a recent post by Autism Daddy where he wondered where all the hatred was.  Apparently it lives down here.

The Man, Grammy and Poppy and I are all seething with anger and injustice, but like smart people, we are devising just how best to deal with this worthless human being.  Grammy has a speech prepared for the next time she encounters this poor excuse for a man, and we will have to see how he responds and go from there.  His intent is to piss us off enough that my parents will move out, and his “problem” will be solved.  But you know what?  They aren’t going anywhere.  And The Boy will continue to walk where he pleases.  We won’t engage with this jackhole, and we won’t be threatened or intimidated.  He went so far over the line that he has absolutely no recourse now but to shut up and go away.  Anything else will be met with quick and swift response from us, and it will not end well for him.

I’m interested to see what will happen next.  You?

A Year Has Passed

The Boy and I have now lived in our new home for a year.  All in all, our transition down here was a lot smoother than I anticipated.  The beginning of the school year had its fair share of stressors, but over the course of the year, we have been very lucky with the opportunities that have come our way (including those that I helped force our way), and we have settled into a very happy existence.

Don’t get me wrong.  We were happy before, and I miss that just a little, the single mom household thing, the metropolitan suburbia thing, the way-more-time-for-hobbies thing.  I miss that a bit.  I miss our friends (although we are looking forward to some visits this summer!), some of our favorite restaurants, having a Target around the corner as opposed to 45 minutes away…

But they have been replaced with The Man around full-time thing, the warmer climate thing, and that little thing called “family” – there is nothing that beats that.  The ocean, new friends that crack me up Every Single Day, our new-to-us home, having The Man around Every Single Day, lunching with my mom, having dinner with my parents, getting off of work at 3pm and not having to do anything else with my job until the next morning (usually), sweet tea in abundance, and date night Every Single Weekend…

So as I sit and reflect about all that has changed in our lives since a year ago, I am very pleased that we jumped at this chance, very thankful for how it has turned out, and very, very happy.

The end of our rainbow

Equality and Divorce

In the state where I was married (and divorced) before, in any marriage lasting 10 years or longer, spouses are automatically granted half of their former spouses retirement, no questions asked.  Therefore, even though the ex was college educated and quite capable of getting and maintaining his own job with a retirement plan, but chose not to, he is entitled to half of my retirement.

For the same reason that I disagree with “no tolerance” policies in public education, as well as all-or-nothing inclusion policies, I find this law completely without merit.

I understand the reasoning behind its inception: it was designed to protect housewives of yesteryear who were often left with no way to support themselves financially after a divorce, having given up any career options they may have had to stay home and raise the children or what have you.  I applaud the thought behind it, and I’m sure it did a lot to even out the playing field in years past.

But now that it benefits someone like the ex, who chose a seasonal, menial job over a salaried position using his degree in graphic design, and chose to take unemployment all winter rather than find a different type of job for those months, who chose to use that time at home smoking pot and doing very little of anything else that might contribute to the running of the household, now this law has jumped the shark.  It has ceased protecting the people it was designed to help, and instead is benefiting those who clearly do not deserve the benefit.

One of the newspapers posted a story about dads fighting back in the court system in regards to custody and child support, and me with my big mouth decided to comment in the comments on the facebook link that it would be great if they could also review that archaic law that decides that 10 years of marriage means you deserve half of someone’s retirement, and guess what?  Yup.  Just about every misogynist on the internet responded back to me.  That we women wanted equality, and now we have it so just suck it up and “pay up Buttercup.”

Bleh.

Never once did I bash men in my comment.  I asked for a review of the arbitrary law, and declared that I would like a more thoughtful approach to the division of assets.  But in response, several men decided that I was the source of their misfortune in life, and that I should pay for the wrongdoings of every woman who had ever wronged them.  Nevermind that a review like the kind for which I advocate could and obviously would benefit at least some men, including these men who have been so wronged by some apparently evil women.  Nope, that didn’t matter.  All that mattered is that I was a woman, women have asked for equality, and now that “we have it” I should shut up.

We still have a long way to go, ladies, if men are against any of our ideas, even if it would benefit them, just because a woman has voiced them.  A long way to go…

 

Our Summer Plan

So, summer break is here.  How did that happen??  One minute it’s May, and the next… Well.  The Boy has two weeks of vacation, just enough time to drive him up a wall.  He is spending leisurely, unstructured days at Grammy’s until ESY starts up.  ESY this year will consist of him meeting up with his teacher at the local library and doing God knows what school-type things for an hour and a half.  And then four weeks out of the summer he will go to a day camp for kids on the spectrum and their siblings, the same one he went to last year, which he grew to love.  And then he’ll have two weeks off again in August before starting up again, one of which will be spent visiting with Fantastic Babysitter and her new baby who are coming to visit (and I CAN’T WAIT TO GET MY BABY FIX!!!).

And me?  I’m not missing the summer break yet.  My job can be stressful, but I do not need the break anywhere as much as I did when I was a teacher.  Plus I live at the beach, so any time I get too stressed…  I don’t want to make you too jealous. ;)

Grammy is being the wonderful grammy that she is, and taking off work a day this week and next to take him somewhere special, maybe the waterpark, maybe a movie to spend some quality Grammy-Boy time with him.  And I get off work fairly early so that we can still go do stuff together.

I’ve seen some other great ideas for adding a little structure to the summer:

  • This one has a theme-a-day which is great to fit into your schedule when you need it or want it
  • These are some great ways to prep your child for the changes in routine, and how to add some structure to the summer
  • And this is a comprehensive list of ideas and resources to ensure brains are still engaged in the summer months

I hope you are ready.  I feel pretty good about it, at least for The Boy.  I hope we still get to spend some family time together, and it doesn’t fly by too fast.  It’s still my favorite season.

Let us know what you’ve got planned in the comments!

Inclusion is still not a “thing”?

While reading the recent NPR article about inclusion, I realized that it’s still a subject of controversy, which puzzles me.  Because to me, the issue of inclusion is about basic human rights.  In America, every kid has the right to a free education, and the notion that some kids who “hinder” or “distract” kids who will actually make a “net contribution to society” and should therefore be stuck in a room somewhere sounds like something out of the 50s and 60s.  Have we really not traveled so far as to realize the “worth” of every human being, and their basic human rights, even in this country?

Wow.

I have to say I’m gobsmacked.  Many commenters were concerned about gifted kids being placed centrally in a classroom so they could help their peers during lessons, as if that were a disservice to that gifted child.  What?  We want to discourage helping others, now?  Because not being placed centrally in the classroom would help her achieve higher levels of giftedness?  Help me understand…

The Boy in his ASD room with compression blankets, sitting atop a pilates ball

The Boy in his ASD room with compression blankets, sitting atop a pilates ball

I am not necessarily a proponent of full inclusion, except when a student with disabilities is best served with full inclusion.  I prefer for my kid to have a safe space and some downtime in his school day, so that he doesn’t have to be “on” all day long.  I love that he has a space where he can be his true self, at least during lunch, and his social skills class.  If he didn’t, he would be ready to blow every day when he got home, and that ain’t good for anybody.  So I appreciate the sort of inclusion he gets – “Inclusion lite”, if you will.

But as I wrote in my recent post, I want him to be able to socialize with his neuro-typical peers, because that’s a thing.  He will need that in his lifetime, in order to succeed to the best of his abilities.  And in my humble opinion, he will need that more than knowledge about the Pharoahs of Egypt.  I want him to belong to his school community, and that just won’t happen if he is stuck in a separate room all day.

I shouldn’t let the trolls get to me, but every human being has worth, and my kid has more than most.  He deserves the same respect as every other kid on the block.  And he does have a very basic right to the same education every other 6th grader gets.

ESY Is Different Down Here

ESY, or Extended School Year, has been a mainstay of The Boy’s summer experience since he was six years old.  I have written about some of his experiences in the past, and he always looked forward to it when we lived up north.  Last year, he struggled with adapting to a summer day camp which did not include computers, and was not like school very much at all, although he ended up enjoying the experience and meeting some new (and long-lasting) friends.

Before we moved here, I asked some parents with whom I had connected in advance, through the autism society’s local chapter whether or not they knew anything about the local ESY program.  They had no idea what I was talking about…

“Uh-oh”, I thought.

When we went through the IEP process this year, the assistant director for special education for the school district was involved (because I was trying to get The Boy into his current program, and being the warrior mom that I need to be to get things done from time to time), and she indicated then that ESY for this summer would be a long-shot.  We would have to prove he needed it with data. “I’ve got six years of data backing me up,” I thought.

And this year’s IEP rolled around and his special ed teacher for language arts and math basically explained that even if he did qualify, which she clearly didn’t believe he did, it was very different from what we had experienced up north.  Down here, it was basically one-on-one tutoring with an aide for a few hours a week.

“Oh crap,” I thought.

I immediately began to devise activities with which I could supplement his summer camp – was there a computer camp or cartooning lessons I could find somewhere (and could I even afford it)?

The Boy’s program teacher called about two weeks later to let me know that they had determined that The Boy would qualify for ESY this year, because he had had it for so many years, and that they would continue to collect data next school year to determine whether or not he would qualify for the following year.

“Yay… kind of,” I thought.

Now we need to determine where this “ESY” experience will occur, and how often and for how long.  Luckily he will have his program teacher, which helps with the continuity.  But it remains to be seen how effective this brand of summer enrichment will be toward maintaining the structure and routine that most kids on the spectrum need through the summer months.

sandy boy

Incognito

I apologize for hiding lately.  Between the stress at work, and the stress of The Boy returning to normal after spring break (yes, still in the process), I’ve had a rough go of it lately.

My goal for work down here was to have something less stressful than what I left.  I left a really good salary, but an increasingly Sisyphean job to come here.  After being unemployed for five months, another sort of stressful way to spend one’s days, I thought I had found something rewarding and with far less stress.  I felt challenged and rewarded, appreciated and meaningful.  And then the tourist season began to get underway, and the tasks began to pile on and the procedures began to change from one minute to the next, resulting in my new-ish job keeping me awake at night, and my feelings of love for it becoming a distant memory.  I still enjoy it, but the frustration level is beginning to exceed the reward.

And The Boy is just now returning to his normal happy self, albeit with a renewed obsession with toilets, which is not the easiest to roll with.  I thought we were past this one, as of several years ago, but all it took was one visit to his dad’s to rekindle the fancy, and now we have to check and see what brand of toilets every single store and restaurant in the county has, and re-create several “flushing” scenes from Monsters, Inc. and Finding Nemo daily.

Luckily The Man has been a rock for me, and we are fast approaching our anniversary, both a little amazed at how good marriage can be.  We’re missing date nights with my working every weekend during wedding season, but as I said, he has been the support I have needed over the past several weeks.

I have lots of posts in me to write, and now I just have to find time to write them.  Bear with me, peeps.  I’m working on it.

:)