Tag: ASD

The beginning of the most important journey of our lives…a.k.a. Chapter 1.

When we had our first son together seven and half years ago, life was relatively simple.  I had been married before, as had my fiancee (now my husband).  I had ended my previous marriage and we shared custody of my two sons from my first marriage.

So there we were, with a new baby and two pre-teens.  Wait.  Did I say it was simple?  Okay, it wasn’t at the time, but when I look at how life is now and look back to that time, we had it kind of easy.  We were making very little money but by gum, we had LOVE on our side, right?

Starry-eyed and raising this brand new life, we were totally unprepared for what would come a few years later, when our second son was almost one year old.

Can anything really prepare you for that moment when you realize that things may not be progressing typically with your child? I remember moments when he was about 8 months old when I’d be holding him and rocking him to sleep.  I’d remember the scene in Mr. Holland’s Opus when his wife realizes that their son is deaf. And on some level, I knew.  I didn’t know what I knew, but I knew.

A few months later, my husband voiced his concerns to me. “He doesn’t look at us when we say his name or when we speak at all.  I think something’s wrong.” He was right- our very smiley, happy child was no longer looking at us.  Most kids at 11 months old are at least looking up when a parent says something, but he did not.  He was happy, but distant. At first we thought it was his hearing, and we talked with his pediatrician.

She referred us to the Ear, Nose, and Throat doc in town, and suggested that we call Early Intervention so that they could come and assess his development.  He was missing out on some of the standard developmental milestones.  By the time he was a year and a half, he would get tubes in his ears to hopefully bring an end to the many ear infections he had as an infant. At the same time, he was receiving speech therapy and “special instruction” to help him learn how to play with toys in an appropriate manner (don’t get me started on that, I have a whole separate post on “appropriate” play).  He was seen by social workers and specialists galore.  He had one hearing test after another, all inconclusive.  A month after the tubes were put in his ears, he had what’s called a “sedated ABR”, or auditory brainstem response study.  This is a test which measures the brain’s response to sounds, and the patient is sedated.  This was our first conclusive test- he had perfect hearing.

Finally, we had a better idea of the direction to head. This was not medical at all, but developmental. His pediatrician referred us to a developmental pediatrician at a hospital two hours away.  They had a long intake process and were booking quite a ways out.  Four months later, almost exactly one month before his 2nd birthday, we were given his official diagnosis of Autism Spectrum Disorder, a Global Developmental Delay (he was delayed by about 18 months), and a Sensory Processing Disorder.

Luckily for us, we’re a rather “clinical” household, as I describe us to physicians.  That is my way of saying “don’t tiptoe around it, just say what it is”.  We’d already done a lot of research by diagnosis day, so this was no shock to us.

By the time he was three, he was aging out of Early Intervention services, and we found him the most perfect integrated preschool.  He was the smallest and youngest in his class, a tiny little non-verbal boy with a pacifier in his mouth and two small plastic animals in his hands everywhere he went. He communicated by pointing at things, and using the few ASL signs that we’d learned as a family.

He developed an incredible bond with his teacher and his aides, people that I am so grateful to continue working with.  About midway through his second full year at the preschool, he began to speak.  I finally heard his voice, and I sobbed.  From there, he continued to flourish, and now he can speak at length about his favorite subjects.

When he finished his second full year (including summers) at the preschool, we braced for him to move into the school district, in a gen ed classroom with a fabulous teacher and a 1:1 aide.  Now he’s in 1st grade, reading well and writing well.  He’s still got needs, and we’re meeting every one as they come up.

All along our path, things have just kind of…aligned in our favor.  I can’t say why, but I do know that no two families travel this path in the same way.  We bring to it our own personal experiences, knowledge, heart and soul.  And no two days are the same, either.  Some mornings I cry on the drive to work.  And then I dive headlong into helping other families so that I can feel some sense of purpose.  Other days are more easy to manage, and on those days I realize how lucky we are to have kids who have taught us so much more than we ever thought possible.

On to chapter 2…

Uh…a little help here?

Tomorrow is the first day of a brand new school year.

To say that we’re ready would be a dramatic understatement.

So what do you do when you’ve had enough, when you feel your patience slipping away, a veritable mudslide washing away the ground beneath a house?

Well, the first thing you must remember to do is to breathe.

It’s okay, we all yell once in awhile.  And while there are 24,000 articles on the internet waiting to tell us how horrible we are for losing our tempers, right here is a post telling you that you are normal.  You’re going to get stressed out.  And it’s likely going to happen on the night before the first day of school, when you have just spent 45 minutes reminding your child to eat “no, sweetie, one strand of spaghetti is not enough.  PLEEEEEEAAASSSSE could you take another big bite” and you feel your temperature rising and you are worried about the many items on your child’s school supply list and you have spent weeks preparing your child for THIS exact moment and your other son is contorting himself into pretzel-like shapes while rolling his eyes up into his head and mimicking a Saiga Antelope and disassembling a cucumber slice, one seed at a time.

You’ve packed the backpacks.
You’ve met with the teachers.
You’ve emailed the aides, the special ed teachers, the Occupational Therapists, the principal, and the head of special ed in your school district.
You’ve written social stories. (more on that in a bit)
You’ve read said social stories over and over.
You’ve visited the classroom.

So when you’re on the cusp of the beauty which is that long-awaited first day, why on earth would you get so snippy?

Well, if you’ve ever seen Ol’ Yeller, you know that the boy in the movie starts yelling at his beloved dog in an effort to make saying goodbye easier.
I would bet that the night-before-school snippiness would be for similar reasons.

Think about it- it’s never easy to put them on the bus and say goodbye for the first time.  It’s not easy to see them go regardless of their age.  When I see my 16 year old off for his first day at school, it’s not easy.  The year is full of so many unknowns for them, and all we can do is hope that we’ve done everything we can to prepare our kids for what lies ahead.

So, I say again: BREATHE.  Good!  Now do it again.  Sit down on the couch with your kids, give them lots of hugs, and remind them of all the reasons you love them so much.  It’s good practice anyway, and it may be the restart your brain needs. And then tomorrow morning, when you put them on that ginormous yellow bus, give yourself a hug and remind yourself of all the reasons that they love you.  

The second thing you need to do now is know that you’re giving them the tools they’ll use in the world.  For some kids, that means a communication device.  Others, a PECS board.  Still others yet, sign language.  You may be working with them on how to manage transitions, or you may be focused on difficulties with eating.  Some households are working on all of these and many more, all at once!

Give yourself room to understand why you may be particularly stressed.  Remember that while you’ve been teaching your children to use these tools, you’ve also been learning how to use them.  You may be figuring out that transitions are hard for you as well, and utilizing the same types of methods that your children are using.  You may have recently realized that you need substantial recovery time from major events in order to be able to attend to certain tasks. Guess what?  Your kids probably do as well.

And while we’re comparing you to your kids, keep in mind that you have spent all day at work, focusing on a million different things and interacting with a lot of people.  When you get home to the place which you’ve filled with all the comforting things, you may start to unravel.  You may start to come unglued.  You may experience some meltdown.  We see it day after day, the minute the kids walk through the front door it falls apart.  Holding it all together at school is hard- it takes energy to maintain certain accepted behaviors, and that requires time to reboot.  We as adults are really no different.  This is my theory as to why we’re far more likely to snap at loved ones than coworkers.  Some studies have indicated that it’s more to do with the quality of home life versus work life, but I suspect that for some of us it’s really that need to do a hard reset.

If some of this sounds as though I’m telling myself, you’re right.  I tell myself these things whenever I feel that mudslide pulling me down.  I hope that this has helped you to know that you are doing an AWESOME job!

It’s hard to believe that the boy in the far left photo is starting his sophomore year in college (this is him in first grade, I believe).  The boy in the middle is starting his junior year in high school (this is him in Kindergarten).  The boys on the far right you may recognize a little better, although the view is less than ideal.  This is Wonder Boy and Speedy, as WB went off to his second year of pre-K and Speedy sped off to Kindergarten.  They’re now going to first and second grades, respectively.

It goes by quickly, y’all.  Too quickly.

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!