Tag: ASD

Learning to let go…just a little

This summer was the first time our youngest boy would be attending summer camp.  In previous years, he’d had summer school at his preschool, and continued his work with a speech therapist, an OT, and a PT.  There were two weeks off before summer school and two weeks off at the end before the regular school year resumed.

This year was different, for although he qualified for summer services, they would be half days and I was not sure how meaningful that would be for him.  With great trepidation, I declined the summer services (because we’re taught to protect any and all services as though our lives depended on it) and sent my baby to summer camp.

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The boys on their first day of camp

This was not just any camp, it was a camp specifically for kids with a diagnosis and/or mental health needs or developmental needs.  It’s a small group of kids and a lot of incredibly talented and patient (and well trained!) counselors who would come together every day for six weeks and share in their common experiences.

It was a camp where my kids weren’t the “odd man out”.  They got to be…kids.  They got to feel normal.  They felt supported.
This has not always been the case, and our previous two years at another camp (for Speedy) showed that not every camp is able to handle special needs.

During the last week of camp, they took a special trip to a waterpark.  Two. Hours. Away.
I put my babies on a charter bus and as I drove to work I cried.
The first of my coworkers to ask me how I was doing was met with sobs.  Because apparently I was really not at all prepared for putting a 5 year-old and a 7 year-old on a bus for a two hour drive which would surely result in their total destruction (or so I was convinced).

(Hint: they were fine, really)

I have a tendency to think of all of the possible Worst Case Scenarios when faced with The Great Unknown. I run these scenes in my head regardless of level of absurdity, and I play them all to completion as though they were part of a movie I’d just seen.

Here’s the result of that trip:

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One VERY tired boy

Did I need to worry?  No, of course not.  While it’s true that incidents do happen, it’s also true that the staff at the park and the staff at his camp know what they’re doing.

The lesson in all of this is that I needed to let go a little, if for no other reason than my own sanity.  This is an important and difficult lesson for a control enthusiast such as myself, and I’m still learning.

What does one do when faced with the knowledge that maybe they’re holding on a little too tightly to their children?
Put down the bubble wrap, Susan*. You absolutely cannot protect your children from the entire world.  You need to let them experience the falls and scrapes and the terrifying moments.  You need to arm them with the knowledge that stuff happens, and that they have the ability to face the stuff when it all goes down.
Because here it is, in a nutshell: if you surround them and helicopter them you may be temporarily making yourself feel better (assuming you have not yet realized the extent to which you’re making yourself a wee bit crazy) but YOU ARE NOT HELPING THEM.  Like Speedy says, “Be like Elsa and let it go!”

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Forgive me, I nicked it off Pinterest.

*There is no Susan.  Or if there is, she doesn’t have bubble wrap.

Respite time!

Respite time!

As my husband and I teeter on the brink of our annual respite weekend, the tension is palpable.  Not between us as much as between me and our kids.  Okay, between us too.

As much as our neurotypical parenting counterparts can empathize with what our daily life is like, they haven’t lived it and often I feel like they’re watching me and scratching their heads in confusion over why I am the way I am.  I cancel plans. I’m tired. I say weird things.  I drink coffee every day and wine every night.  I talk about autism a LOT.  But in all fairness, it’s kind of my entire existence.

Once a year, we take a break for two nights.  Last year that meant our first chance to sleep without having WonderBoy sleep in our bed with us.  This year it means a chance to not spend every waking moment wrangling a child who cannot seem to control his body.  It means not having to redirect him ten times just to get him to the bathroom.  It means we can breathe for two days and not have someone yammering non-stop about I don’t even know what.

I can’t pretend that this is fun.

I can’t even pretend that I’m any good at this.

While we didn’t feel certain at first with Wonder Boy, I feel utterly thrown for a loop with Speedy.  The anxiety I understand because I live with it every single day.  But the ADHD?  HOLY COW it’s utter chaos.  And I’m tired.

Thankfully we live where we do, and there is an organization that supports parents by providing one respite weekend per year.  I cannot wait to spend our time reconnecting and meeting other couples who live our life.

Yes, it is possible to go on vacation

Yes, it is possible to go on vacation

Ah, summer vacation.  The words elicit memories of running through sprinklers in the backyard, sitting with friends on the steps while you eat popsicles until your fingers are sticky, and late nights catching fireflies.

<screeching tires sound>

Not in this house.
In this house, summer vacation means a halt to all special ed services, early bed times, extra melatonin doses on wild days, and keeping fingers crossed that we all survive it.  It means higher anxiety levels because the routine is broken.  It means cajoling the kids into trying things like swimming.  It means that at this very moment, two wild children are yelling about bananas and Sasquatch while I attempt to focus on what I’m saying… what was I talking about?  Oh, yes.  Summer vacation.

Three years ago was the last time we had taken a trip somewhere, because frankly traveling with kids on the spectrum is my personal version of hell.  It means ripping the kids out of everything they know and hoping that they don’t totally fall apart.

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The photo above was from our last vacation to South Carolina.  We drove for two days to get there, and that alone was pretty challenging.  Being stuck in a hotel room with kids who are completely out of their element is a special kind of difficult.  But both kids were still in diapers (so there’s that- fewer potty breaks on the road trip) and they both still rode in a stroller so we could keep them secure.

Fast-forward to this year, and we decided it was time to take another trip.  Frankly, my husband and I were getting a little zany and really needed some down time.  So I hopped onto my favorite travel site to look for a cottage to rent.  The plan was stay close enough to home to be able to easily manage potential meltdowns, while being far enough away to feel really AWAY.

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Oh yeah, baby… this.  So very much this.

I found us a place on the lake, about an hour from home. Easy-peasy.  It was within budget, could accommodate our entire family (including my mom), and we could relax and do the fishing that Speedy has been asking to do.

Within minutes of our arrival, Wonder Boy was nervous.  “We’re not staying forever, right?” “No, honey, we’re staying one week.” “But we’re not staying forever, right??”

This went on until the next day, when the questions steadily increased.  Fortunately, I needed to head home to grab items that we’d forgotten, so when I was there I grabbed all of his plastic sea creatures and insects (the more realistic looking, the better) and dumped them into his backpack.  I added his beloved National Geographic for Kids magazines and when I got back I presented him with his treasures.  He sat on a towel in the yard and proceeded to script one of his nature documentaries for the next hour.

The lesson here was clear: a piece of home (or several dozen, in this case) really makes all the difference when you’re traveling with kids of any abilities, but especially kids on the spectrum.  It’s all about the routine, the familiarity, and when you take all of it away it can be scary!

And then, something truly beautiful and magical happened:

They fished.

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And fished.

And fished some more.

Speedy sat still.

Let me repeat that.

Speedy. Sat. STILL.

I am still completely taken aback by this, because while I know that combined-type ADHD includes hyperfocus, we’d not yet seen true hyperfocus in him until the vacation.  Until the fishing.  And then… well, it was just about the best gift we could have given him and ourselves.  The gift of hope.

This showed me that yet again, I was entirely focused on getting WonderBoy through the process of a vacation, and had not thought about what it could mean for Speedy.
And I can’t forget the Teens.  They spent the week relaxing, drawing, photographing, and appearing to grow closer to each other.  This brought me great joy, particularly as my first baby, my oldest son, prepares to completely break out on his own.  He’s been at college for a year, and spends each summer working at a camp.  To say that we seldom see him would be an understatement.  I hope that he knows how much I cherish the fact that he could join us on this trip.

This post is starting to look like I just wanted to share all my photos.

The truth is, I do.  Why?  Because this trip was so much more than simply a week away from our daily lives. It was a chance to reconnect, to find ourselves, to find promises of what can be. This trip helped me find…me.

 

He ate what?

 

 

Many kids on the autism spectrum also have sensory integration dysfunction.  This is something I’ll spend more time on, but I’d like to speak about eating difficulties.

You may have already encountered this- your child will only eat certain textures or foods that are only white or only bread products.

Before you say it, yes, many kids have this issue.  But it goes deeper for kids with sensory needs, and can cause a whole host of nutritional problems.

For some kids, there are actually links to gastrointestinal distress and eating problems.  Before you can decide if something is a sensory problem, you should always rule out medical concerns.

At the conference I recently attended, I heard an Occupational Therapist talk briefly about eating difficulties in kids with sensory integration dysfunction.  I’ll admit, it’s kind of a hot topic for us spectrum parents, and something we worry a lot about.

My WonderBoy eats only a few foods: chicken nuggets, peanut butter sandwiches on wheat bread cut diagonally, or a plain bagel toasted with butter, cinnamon and sugar on top.

That’s pretty much it, with only a little bit of variation.

I was reminded by this OT that it’s important to avoid the “food rut” where we let them eat the same thing every single day.  Admittedly, this is hard to do when you’re trying to manage multiple kids with multiple needs and you just want to help your kid eat something.

I remembered that “first, then” works really very well with WB.  So yesterday I asked him to try something that he wouldn’t normally eat, in order to gain access to the food he really wanted.

Y’all, it worked.  Really!

Since yesterday, he’s had four bites of banana, a bite of shrimp, and even BROCCOLI.
Now, our Speedy really loves raw veggies, so we’ve been a bit spoiled with him. I mean, how many 7 year olds actually love asparagus??  Yeah.  He does.

So tonight I decided to capture the broccoli moment on film.  Please remember that I am never forcing him to eat it, and he absolutely loathed broccoli before this moment:

Meeting Temple Grandin

Meeting Temple Grandin

This past week I was fortunate enough to attend a conference where the speakers included none other than Dr. Temple Grandin, as well as Britt Collins (an amazing OT) and Joanne Lara, executive director of the organization Autism Works Now.
As an autism parent and someone who works in the business of helping people with disabilities, as well as someone who self-identifies as being somewhere on the spectrum, I have been anticipating an opportunity such as this for some time now.

When I arrived at the hotel where the conference was being held, I looked around for some signs of where to go next. As I looked to my left towards the in-lobby Starbucks (I really needed coffee), I saw her trademark western rodeo-style shirt. Temple Grandin.

If you know me personally, you may know that I can get a *little* star-struck. I walked up to the counter to order my coffee and found myself standing immediately to Dr. Grandin’s right side. Do I talk to her? No, she’s having a conversation with someone. Get it together, kid, you’re acting weird. Just order your coffee and pretend that you’re a functioning adult.

I followed my internal dialogue’s advice and ordered my coffee. I *may* have stared a little too much at Dr. Grandin, because a couple of times she turned slightly to look at me. Oops. Social graces are not always my strong suit.

I made it around to the space reserved for this event and found a long table covered with easily 100 different book titles. Many of these titles are already available in the Autism Lending Library that I manage, some were new to me. At the far end was Dr. Grandin, standing next to the many different books which she has written throughout her career. People were already gathering, and she was speaking with each of them individually. “Are you a parent or a teacher?”, she’d ask. Depending on the answers, she would carry on the conversation with questions about ages of children, different personal interests, and whether they worked with people who are autistic who have held jobs.

I found a book which I did not have in the library, and for which she’d written the foreword. I waited my turn and quietly asked if she’d mind signing it. I was holding back tears and a large lump in my throat as I did this. The moment that I’d been waiting for was actually happening right now, and I fought my impulse to ask her for a hug (I’m weird, but not that weird).

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I swallowed hard and asked for a selfie, and after the photo was taken I barely eeked out “thank you”.

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holy mackerel, I’m standing RIGHT next to Temple Grandin.  Is this for real??
She autographed books and stood for photos with literally hundreds of people as she listened to their stories.

At almost seventy years old, she’s had a lifetime to figure out what she can and cannot handle. I was pleased and impressed when she would comment that she was quite used to this if someone asked if it was too much.

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By now I’d moved on to other tables to find a large array of sensory items. Given that I manage a lending library that includes many of the items shown, I was happy to take a business card and sign up for the mailing list. I was very excited to see the same noise-canceling headphones that Speedy used at school, and quickly bought them.

I found a booth for an agency called Transitions which helps teens and young adults with the often rather abrupt transition to college. I thought of my now 16 year-old who may indeed have this struggle, and I spoke with a young woman who I think is likely autistic about this program and who they support. I was pleased to learn as much as possible about this program, because often I am asked by providers about available services in New York State.

When the conference actually started, I sat in the back of the very large room and tried to take in the sheer magnitude of it all. Noise filled the space as attendees trickled in, and soon it was almost unbearable. Eventually someone approached the podium and announced the start. He warmly introduced Dr. Grandin to the room, and showed a short film that included clips from the movie which carries her name. I’ll admit that I have not yet watched it, and typically we avoid films about autistic people because we live this. It’s hard to watch, to be frank. But after seeing this short set of clips intermixed with interviews with the stars of the film, I think I’ll be more comfortable watching it.

The hair on my arms stood on end as the gentleman introduced her finally, and every person in the room who could stand, did. I got choked up and realized that this amazing woman has spent her life talking about what it’s like for her, and that people are drawn to her story in such a way that a feature film about her life was made.

She said many things which did not surprise me: bring back art and shop and home economics to schools. Kids should work when it’s legal to do so, in whatever way speaks to their personal strengths. Parents must give kids the chance to TRY something, everything, rather than helicopter them. Presume competence, and support people in their strengths rather than fixate on deficits.

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Um, yeah. All of that.

I could go on for days, I really could. What I really want to say here is this: I know that there are people out there, particularly some adults on the autism spectrum, who have been angry about her messages about getting out and working. The impression I’ve gotten is that there are some who feel that her message ignores those who are not able to work for a variety of reasons.  I can’t speak to how each of you have taken her words, but I do wonder how many have gone to see her speak. Perhaps we just won’t agree. But I do feel that people should be able to work for a living doing something they love, regardless of ability, if that’s what they want to do. I feel that those who cannot work should still be supported doing something that they love, in whatever way they can do the thing that they enjoy.  She wants people to be included, not secluded, and in a way that meets them where they are.

The other speakers were absolutely important to the message of the day, and I would like to dedicate separate blog posts to them. I gained a LOT of knowledge from the speakers of the day, especially Britt Collins.  I will be writing about her because I’ve been putting in to practice some of her ideas in the past few days, and they’re working.  Can you say broccoli?  Or shrimp?  Yeah, WonderBoy tried both in the last two days.  Her work deserves a LOT of attention.

I will apologize for the quality of the photos.  I was using my phone and zooming all the way in… now we can see the downside to sitting in the back of the room!

Making friends

Making friends

When my youngest son was first diagnosed with ASD, I wasn’t sure what to think.  My husband and I tend to think rather clinically, and had done a lot of research, but there a great many unknowns.  What your child does (or does not do) right now isn’t an indicator of what they’ll do in a month, six months, a year, ten years.

One thing I was sure of when he went to preschool was that he was not making friends in the way typically-developing children do.  He didn’t really form any connections to other kids until just before he transitioned to Kindergarten, and even then it was more like he really looked up to the other child.

Recently we went to a cookout at the house of a family we’ve known for years.  Our kids have played together on and off all summer, every summer.  And up until this past weekend, WonderBoy hadn’t really connected with them. What happened took my breath away.

I’m not even going to apologize for this barrage of photos.  It all started with this moment:

 

 

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As the late afternoon hours went on, and the color of the sunlight changed gradually, we began to realize that the two had not parted ways for even one moment….

 

And as everyone gathered to eat, it continued on…

And on…

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And although we gave him many warnings when it came time to head home at the end of the night, he sobbed in his grief that he must leave his new friend.  The following day he asked for her by name.  Yesterday he asked me if I’d call her mother.  The boy has found someone he connected with.

Now it just so happens that she is the same chronological age as his developmental age.  Perhaps there is something to that, I do not know.  What I do know is that he has broken every Rule of Autism* so far.  Like his parents, he defies anyone and anything that says “you can’t”.  And that is really “au”some.

These photos were shared with the permission of the parents of the girl who WB bonded with. They’re an incredible family who is full of love and whose children know the true meaning of friendship. Because of the welcoming nature of their parents, these are kids who will grow up understanding how to be accepting.

 

A new diagnosis

Two days ago, we made the two-hour drive to see the specialists who gave us our youngest son’s diagnosis four years ago.
This time, we were going to see if we could get to a more definitive diagnosis for Speedy, because while we felt like we were standing in the right forest, we definitely were not barking up the right tree… it didn’t seem enough to simply classify it as combined-type ADHD, and we’ve gotten nowhere with medications so far.

The psychologist who saw him a few months ago agreed, and at that first appointment he couldn’t even get through the evaluations with Speedy.  He is just so… speedy.  This time we took a different approach, with me listing off all of the long-term behaviors and sensory needs, social skills needs and anything else that might fit the bill.

After a half hour of working with Speedy, they emerged and he told me that he absolutely felt comfortable expanding his diagnosis to included autism spectrum disorder. Speedy felt it important to interject, “the numbers on the clock are WRONG.  They are not first grade numbers at all.  You need to change them…I’m watching you….”.

​After a moment to hide a smile, the doctor did say that if we were working with the DSM-IV, he’d receive a diagnosis of Asperger’s Syndrome, however that is now all lumped in with ASD under the new criteria.

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Occasionally it washes over me that something that was never even on our radar five years ago now utterly consumes us. This life we live, it’s not for the faint of heart. It’s not what we expected at all, and yet here we are. Day after day, tirelessly advocating not just for our children but for all children and adults with disabilities. And you know what? While I clearly wouldn’t trade it for anything, I’m so so tired.