Tag Archives: autism

Our Summer Plan

Posted on by

0

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!

ESY Is Different Down Here

Posted on by

0

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

“Combating” Autism

Posted on by

0

A bill was just introduced in congress to extend the Combating Autism act, set to expire at the end of September, for another five years.

I just have one question: Who picked the name for that?

Combating Autism?

Autism is and always will be a part of my son, so when you “combat” autism, are you “combating” my son?  I would much prefer that you support him, encourage him, and provide him with opportunities, rather than “combat” him, or any part of him.

IMG_2297

I know, I know.  This is potentially a good thing, “shaping the Federal response to autism”…

But when things like this are named incorrectly, it can set a poor tone, a negative focus, a misinterpreted goal.

As I’ve said before, Words Are Important.  I still want to know who came up with this title…

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.

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.