Author Archives: simpleijustdo

I Fought the Dock and the Dock Won

Posted on by

2

Yeah, so this weekend, THIS happened…

not mom bruises

I was walking down the dock, minding my own business, waiting for a very late bride to show up at the boat, and I stepped over a shin-high chain that keeps people off the end of the dock…  Well, I attempted to step over the chain, but the chain had other ideas.  I’m not sure what happened, and even though I have tried to determine, CSI-like, what happened from the resulting bumps and bruises, I have not been successful.  All I know is it was not graceful, and I ended up flat on my back on the dock.  I took a moment to laugh at myself, and then hopped up, ready to see how many people were laughing at me on the waterfront (luckily only a couple people, like my boss).  I knew I had some abrasions, but I was wearing long pants, and was determined to suck it up and get through the wedding and be home before I even looked at my wounds.

Suffice it say that I thought I had broken something near my left kneecap by the time Saturday night rolled around, and couldn’t move too well on Sunday, either, with strict orders from The Man to keep my feet up.  I don’t think you call them goose-eggs when they are on your shins, but I have one the size of an Ostrich egg on my right leg, and the bruise the size of Montana towards the back of my left knee?  Let’s just say I still can’t bend my knee all the way.  Do you like how the bruises are wavy-shaped, like a chain?  Monday was still stiff and sore, but today was much better movement – I’d say I’m at about 70 percent.

I must be getting older, because I’m finding it harder to bounce back, so to speak, but I’m glad it seems I’m on the mend.

And I have learned to always, always, always unhook the chain on the dock.

Luck

Posted on by

4

I was chatting on Facebook with a cousin of my dad’s whom I don’t know altogether well, and he said he had been following my posts about autism, in particular a link to this post, describing how much of a struggle some parents of children on the spectrum face every day.  He said he hadn’t realized how bad it could be, and hoped we didn’t face those kinds of challenges.

I filled him in a bit on The Boy, and how well he’s done in his new program, and predictably (albeit sweetly), he said how lucky The Boy was to have such a strong advocate for a mom.

The truth is, I am the lucky one to have The Boy.

I look at him every day, amazed that this boy is mine, that he has half my genes, that he has grown so big and so clever and so funny.  That he has grown into this fascinating human being with moods and thoughts and interests ranging from cars to space to recording and sound editing.  That he is so capable, and so vulnerable, yet so strong himself to be on the spectrum and deal with all of his challenges with fairly little complaint.

IMG00007-20100904-1632

I just wish I could know him better.  I wish I could communicate with him more easily about his deep thoughts and feelings (as if he would, pre-teen that he now is).  I wish I understood him better, and I feel like I have failed him when I can’t understand something he is trying to make me understand.

I love this boy of mine, more than I ever thought a human being was capable of loving, and the bonus is that I like him, too.  I wrote recently about everyone falling in love with him, and most people who get to know him end up knowing he is a great kid.  The kind of kid it is easy to be strong for.  My job is simple, and I’m the lucky one.

TBT: 2006

Posted on by

0

Flash back to 2006, as of yet, undiagnosed although doing speech therapy and OT.  Note the pull-up.  This was the first time The Boy picked up a writing utensil independently and drew something without being coached or instructed.  He said it was the big, red, blow-up dinosaur that we had seen recently at the zoo.  You’ve come a long way, Baby!

 

Big Red Dinosaur

Big Red Dinosaur

Extra-Curricular Activities and the Autistic Child

Posted on by

0

I read and shared a great article the other day, written by Laura McKenna, entitled, “Our Public Schools Must Be More Autism-Friendly — Here’s Where to Start,” and published on the Pacific Standard Magazine website.  In it, Ms. McKenna highlights ways in which schools could be more inclusive with their extra-curricular offerings.  She makes an excellent point, as may of the kids I know on the spectrum do not participate in clubs and sports, due to the level of social sophistication that is required for inclusion.  But that only allows our children partial access to everything the school experience has to offer.

The Boy and I have made the decision to continue with school band next year.  I have spoken to the band director, and we are going to take a proactive approach, and really monitor what needs to be modified and accommodated for him, even in terms of performances.  I am comfortable with that, and if I ever get uncomfortable with the situation, I can pull The Boy out and continue with private lessons, which was my intention when the whole band debacle went down this winter.  But here’s the thing: I realize now what a social thing school band is, and I understand that this may not work out for The Boy, and that’s OK.  But I still want him to belong to his school community, and if it won’t be through band, then how?

We have mostly stuck with independent stuff like surfing

We have mostly stuck with independent stuff like surfing

When he dropped him off after spring break, his dad told us all about how they played basketball, and The Boy has a great shot.  They also worked on catch, but were not as successful, and they would work on that (uh, right).  Sure, if The Boy has interest in playing sports, we could encourage it, but to what end?  School sports are also social in nature, with the necessity to read cues from teammates and opponents and to quickly interpret them and decide on a course of collective action – a tall order for someone with underdeveloped social instincts and executive processing difficulties.  So he shoots free throws by himself?  Again, how does this help him fit into his school community?

Our local Autism Society Chapter has taken on the challenge to fill this void in our community, and I applaud them for it.  They have been recognized statewide for creating a “Friends, Fun, and Birthday Club” which happens once a month to celebrate all of the kids birthdays that happen that month.  Friends, siblings, and those on the spectrum are all invited – anyone can attend, and since Birthday Parties are kind of a sore spot for the autism community, this meets a very strong need, and is quite successful.

They also have a once-per-month fundraiser at a local pizza restaurant, which has turned out to be a social gathering for the kids on the spectrum and their siblings.  They all sit at the same table, away from their parents, and they bring their DS’s and gameboys and have a good ol’ time.  It is a sight to behold, and I almost get teary-eyed watching them together.

The chapter offers monthly music and art programs for the kids to participate in, too,and again, friends, siblings, and kids on the spectrum are all welcome.

But again, this is all outside of the school community.  Inclusion needs to happen outside of the classroom, as well, and it is high time our schools begin to recognize the void in our kids lives.  Yes, we want to allow them the comfort of being alone, but as adults on the spectrum will tell you, they also want to have friends and be a part of the larger group.  We have to help them do that, and developing programs to address those needs is long past overdue.

I’m off to share this article with my son’s principal…

The Boy is Back

Posted on by

0

The Boy, still sleeping, catching up from Spring Break at his dad's

The Boy, still sleeping, catching up from Spring Break at his dad’s

The Boy is back and seemingly had a good time.  And I am glad.  I’m glad there were no emergency phone calls asking me what to do because he is having a meltdown.  I’m glad it sounds like they actually spent time together, which hasn’t been the case in the past.  And it’s early days yet, but I’m glad that The Boy seems to be happy to be home, with no lingering ill-effects like cat scratches covering his hands, or a fear of the bathtub.

I am happy to have him back, and I am happy he had a good time.

That does not mean that I trust things with his dad have changed.  While setting up this trip, his dad talked about taking him to Disney in May, because he knows someone who works at Discovery Cove and could get “us” into all the parks for free – you see, he wanted The Man and I to share in this adventure, most likely because he wanted us to drive The Boy down to Orlando to meet him.  I asked him not to mention this idea to The Boy, and told him May wouldn’t work, as The Boy is still in school at that time.  When we met for drop-off, the ex explained that it would have to be postponed, and that the cost of Discovery Cove would be $150 each for he and The Boy, and if The Man and I wanted to go it would cost us $400 a piece, so maybe we wouldn’t want to do that.

So says the ex, who is almost $800 behind in child support.

So you see, I am happy this trip was able to happen.  I am happy The Boy seemed to have a good time.  But not for one second do I think things have really changed.  Not for one second do I believe the ex is done hurting The Boy, albeit unintentionally.  Plans will continue to be cancelled, phone calls left unmade, etcetera, etcetera, etcetera…  Maybe it’s pessimistic, and distrustful, but it’s also evidence-based, and I am too protective a mom to think otherwise.

The Handoff

Posted on by

0

A co-worker asked how my weekend was, and I think I responded something like, “Meh.”  Because it was a nice weekend, and The Man and had a tiny vacation, but I had to give up The Boy, so there’s that.  The truth is I hate giving him up, but I have an undying hope that he will be able to salvage something of a relationship with his dad at some point, and so I know this is good.  Or has the potential of being good.  But having him gone is like not having an arm for a week.

And so, while the weekend was a nice little getaway, and I could do nothing but smile at The Boy’s insistent questions (“How much longer?  Are we there yet?  I wonder what kind of lights Dad’s new car will have…”) and statements (“I can’t wait to see the new puppy!”), it still just sucks and my emotions are a little raw, a little closer to the surface.  I will (and already do) miss being a mom, at least in the active sense, this week.

Here’s to hoping it goes by quickly, uneventfully, and as painlessly as possible.  Tomorrow’s another day.

IMG_1042

First Visitation in a Year

Posted on by

1

Saturday, we hope to take The Boy to meet his dad so that he can spend the week with him.  He hasn’t seen his dad since last March, last spring break.

countdownThe Boy is excited, especially knowing that his dad has a new puppy to meet and a new car over which to obsess.  I am happy that he is excited, and happy that his dad seems to be making an effort this time around.  But, as always, it is with guarded optimism.  The Boy has been hurt too many times for me to blindly accept that all is sunshine and lollipops.  I won’t trust that this all will happen as planned until we actually see his dad on Saturday.  And not for one second do I believe that there won’t be an impact after Spring Break.

Even when trips like this have gone well in the past, there has always been an adjustment back tour normal routine, household rules, and expectations.  And I am preparing everyone here that hasn’t experienced this first-hand before.  The Man says he understands and is ready, as do his teachers – I have prepared everyone to the best of my ability for the inevitable transition that will occur when he returns.

And if it doesn’t go well, or doesn’t go at all, it’s a whole ‘nother story, as you can imagine.

But right now, we are cautiously optimistic, glad to see The Boy’s excitement, and holding our breath for now.

Autism and Progress

Posted on by

0

The Boy earned all A’s this quarter, and I was so proud.  I was over the moon, though, when I read his program teacher’s comment that he has made great strides with his social communication over the past two quarters (ever since he has started at his current school).

progress

You see, report cards don’t tell you much about neuro-typical kids, let alone those on the spectrum.  Traditional report cards, anyway.  They don’t tell you about improvement and progress, they are simply a snapshot made up of a bunch of other snapshots about whether or not your kid knows what the female reproductive part of the flower is, or what an Egyptian dynasty is.  Those snapshots do not tell you whether or not your child is making friends, able to initiate a conversation, or independently pack his own backpack.  Report cards most definitely don’t tell you those things.

And in an autism household, where we take every day as it comes, and don’t think too long or hard about where The Boy will be and what he will be doing in 10 years, because there is no way to predict, and therefore little practical use in worrying/dreaming about it, I really don’t care if he knows what an acute angle is, or what the word “illuminate” means.  I’m very glad he has access to the 6th grade curriculum (and would be fighting the system tooth and nail if he didn’t), but I know how little of it he will actually use in his day-to-day life (because no one really uses any of it in their day-to-day lives, neurotypical nor on-the-spectrum).  I am much more interested in that IEP progress report that tells me how he’s doing in terms of counting change, and flexibility with his schedule.  That set of stapled sheets that is a report on the defined goals that the people who know him best have set for him for the year is way more important to me.  Because the more he succeeds at making progress toward those goals, the more I can plan for his future.  Because those skills, the being-able-to-make-a-joke-that-cracks-up-the-entire-band-class-including-the-teacher skills?  Those are the ones he’s gonna need when he’s done with school.  And those are the ones I care about.