Month: May 2017

The scary things are sometimes the best

Sometimes the biggest and most terrifying steps in life can be the ones that save us.

Six months ago, I walked away from the job I’d known for 8 years (in a field I’d worked in for my entire life) to start my new career.

To say that I was terrified is a dramatic understatement.

10406613_10205524769660900_5541946317316111880_n

What will we do for childcare?”

Having worked from home for 8 years with a fairly flexible schedule, this was the scariest question. How do you normal office-dwellers do it??

Obviously, we figured that one out.

 

I’ve worked alone for this long, won’t that be weird to be in an office?”

When I left the solitude of our home to go be in an office every day, what happened next was unexpected… or at least it was to me. You’re probably reading this thinking “well obviously, I could have told you that this would happen.”

I started really seeking out opportunities to participate in the world around me. Much to my husband’s amusement, I even joined the Special Ed PTA and am being nominated to be the secretary. Because you know, I like to do ALL THE THINGS.

I found my tribe, I found the place where I can truly be myself, and I have grown more in six months than I ever thought possible. I have dreams again, the people and the agencies I work with every day inspire me, and I once again have that feeling that we can change the world.
I thought I would never feel that feeling again, after I left the naivety of my twenties.

Finding your passion isn’t as simple as sitting down and thinking about what you want to be when you grow up. Sure, that’s what we’re taught to believe, but the reality is that it may hit you in one big “a-HA!” moment or perhaps several smaller micro-moments.

img_4902.jpg

(Me, presenting sensory-related things to people who actually sat and listened to me! For two whole hours!)

How it strikes you will vary, but the fact that there is something out there for all of us is undeniable. You too may find yourself telling your executive director, “I have the funnest job ever!”*

 

And we will be here for you when you do have that moment.

 

*Yes, I actually did that.

COMMUNITY CONNECTIONS ARE KEY

I originally wrote this back in January, but as my blog has moved here, I didn’t want to forget this.  This day absolutely changed me in so many ways…

post 14

(image shows the Cornell University hockey team with Franziska Racker Centers’ Executive Director Dan Brown)

“We envision a world where all people know they belong.

This is the vision of the agency where I work.  It’s not just our vision, it is my personal mission and a goal for the people who I work with every day.  And it needs to be your personal mission as well.

You now have one job: go out into the community and get to know someone with a disability.  Talk to someone who is different from you.  Include people with differences in your life, in your activities.  And take part in theirs. This should be the job of every single person in this room, no excuses.”

These are the words I spoke to the 28 members of the Cornell Hockey team at the end of their recent visit.  We have a great relationship with this team and with our community, and we wanted these young men to have a chance to visit the pre-K classrooms where kids from ages 3-5 learn together.  The classrooms are integrated classrooms, which means that children who have disabilities work and learn and play side-by-side with children who are typically developing.

When I first met this group, all they were told about me was that I had a son who is autistic and who went to this school.  All I knew about them is that they are students who play hockey, and that maybe one or two were willing to speak up and mention someone they knew with a disability.

As we walked down the hall toward the class, one of the guys mentioned that he had visited this past summer on a day when the Cornell Companion therapy animals were there.  “Guys, seriously.  They had a LLAMA.” was his main comment, and this was met by disbelief and some laughter.  I put on my tour guide persona (a.k.a. I walked backwards while talking to the group behind me) and launched into my “why this school is so awesome and by the way there’s a llama” speech.  It goes a little something like this:
“This school is incredible- really! When my son first came here, he didn’t speak yet, he didn’t play with other kids.  He was scared of the swings, and really would just hum to himself and play alone.  And through his daily therapies here, including occupational therapy, physical therapy, and speech therapy, he blossomed.  Oh- and once a week they get a visit from therapy animals, including the coolest llama ever!”

By the end of this well-rehearsed speech, we had reached the class.  The teacher- my son’s former teacher and my personal hero- stepped out to prepare the guys for how to handle certain situations.  The thing to know is that some of the kids in the class are still figuring out where they are in relation to the rest of the world.  And sometimes they can be too rough or a little up-close-and-personal.
After introductions were made, we all went to the gym.

For thirty minutes, I watched pure magic happen.

One boy hopped on a tricycle, shouting “you can’t catch me!”.  Immediately, the seemingly tallest member of the hockey team grabbed another trike and contorted his six feet or so of body onto this child’s toy.  And he couldn’t catch that boy after all, but he sure tried!

One girl grabbed the hand of a team member and dragged him over to the play structure.

Two little boys grabbed a giant inflated ball and proceeded to drag their new friends to the basketball hoop.

And several children who rarely approach anyone gradually moved in close to ask the name of one young man.

Magic.

To witness all of this was… moving to say the least.  I dreaded telling them when time was up, and hugs were shared from the guys in my group to these amazing children. As we left the room and walked back down the hall, I asked them this: “So! Who’s ready to start working with children in special education?”, which was met with a delightful chorus of “ME!” from all of them.  ALL of them.  post 14a

Sometimes, you’ve got to stop and smell the flowers…or photograph them

Sometimes, you’ve got to stop and smell the flowers…or photograph them

IMG_7086IMG_7097

Today was…not easy.  It’s been a hectic week at work, and while I was so excited to stand up in front of a crowded room and present everything that I currently know on meeting the sensory needs of our kids and how that ties in to communication and behavior, it was also stressful.
I was truly relieved to greet the weekend, and the boys were wound pretty tightly this morning.
There are days when the exhaustion starts at 5am and doesn’t let up until my head hits the pillow at 10pm.

 

And then, I missed Speedy’s baseball game.  Damn. (I mean, I literally arrived as they were packing up the gear)

IMG_7094

But as you can see, he’s pretty easy going where that’s concerned, and was happy to go to the park for a bit afterwards.

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.

post 13

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.

When our children are their advocates

When our children are their advocates

Seeing our children advocate for themselves is the goal of many parents. We teach them the rules of living in the social world and we teach them to question that which they do not understand.

The method to getting there is a little more labor-intensive with children on the autism spectrum and/or with ADHD. My husband and I often talk about taking the “scenic route” to get to these goals, as we often have to navigate our children’s various challenges along the way.

For neurotypical children, it starts early. From the first time that your toddler tells you “no!” they are well on their way to understanding self-advocacy.

post 12

(Image shows a young boy looking out a window)

This sometimes can take a year or even two years longer for some children, and may never happen for others- not in a standard way, that is.

Behavior is communication

Remember this phrase- it will get you through the tough moments, I hope.  Behavior is the communication of need, my mother tells me after a lifetime of working with children and families in crisis.  This is absolutely true, and the behaviors we see don’t always translate in a very obvious way.  This is to say, when you see your child jumping on the couch all the time, this doesn’t always mean that they want to jump, but they are trying to communicate something…

But what??

If behavior is the communication of need, then the next step is determining what they are telling you through their behavior.  A person with a sensory processing disorder has a need for certain types of movement and sensory input, and there isn’t just one type of thing that will fulfill that need.

(You may hear an occupational therapist refer to proprioceptive and vestibular input.  These are connected to how we perceive our body’s position based on movement.  If you have a sensory processing disorder, the information may not be reaching its intended destination in your brain, or may take longer to get there).  

A “sensory diet” is a list of activities that is typically provided by an occupational therapist.  This “diet” is designed to help your loved one with his or her sensory needs, and includes a variety of activities such as:

post 12a

Using a body sock!
(Image shows a boy standing up inside a stretchy body sock)

post 12b

Smooshing into a beanbag!
(Image shows a boy lying on top of a beanbag, pushing into it with his face)

Other helpful activities can include swinging or gentle squeezes.  I like to think of it this way: for people with a sensory processing disorder, it’s as if they don’t always know where they end and the world around them begins.  The information coming into their brain through their five senses is getting jumbled, and this input gives the brain confirmation of where someone’s “edges” are.
I picture a comic strip character: thick, dark lines outline the character.  When you take those thick outlines away it becomes more difficult to tell where that person ends and where their comic strip world begins.

I may seem to be getting off topic, but I promise, it all leads to one place (remember- we’re taking the “scenic route” to get there).

Do you remember what I said about behavior?  It’s all about communication- for our loved ones who take a different path to get somewhere it’s all about getting their needs met and helping us to know how they feel.

If you follow my blog you may have read the post about social stories.  If you haven’t read it yet, you can find it here.

This past Sunday, we decided to try the trip to Target again, with a twist- this time we only went to Target.  I went with WonderBoy, my husband, and the Teen.  There’s a lot to be said for the three-to-one ratio.

post 12c

(Image is a boy in a store, holding a stuffed animal against his chin.  There are two people                                                                 behind him, looking at DVDs)

WonderBoy stimmed the entire time we were there the previous week, but this time he decided to sit in the cart.  This provided him some sense of security, and he was more at ease.

I reminded him of what we were doing: “We’re just getting a few items today, and we only have time to be in Target today, okay?”  I found myself repeating these words on what felt like an endless loop.
“Just getting a few things today,” he’d repeat.  Then he’d ask, “And then we will go to the mall?”
This has been the struggle- to get him through these social situations like shopping. “No, not today.  Today is just Target.  We will have time to walk around inside Target once we get what we came for, okay?”
I wanted to be sure that he understood what we would be doing today.  “Remember, once we’re done shopping we will pay and then go out to the car with the things we bought.  Then you can have a special treat!”
After finding the special treat of  his choice, we paid for our items and made our way out to the parking lot.

With papa on one side of him and me on the other, we took a moment to congratulate him- “You did a great job in the store today, buddy!” to which he replied, “that wasn’t me.”  That told me so much with three words.  He continued by later telling me that he didn’t want to talk about it.

You may wonder why I connected this moment to a post about using behavior as communication.  For our children, communicating how he felt about his success in the store involved more than simple words.  He showed me through body language, and through his need for time in his sensory room when we were home.

That level of advocacy is something that makes my heart fly above the clouds.  We were told early on that he might never talk.  For him to be able to tell us that he isn’t in the mood to discuss this major success in his life goes beyond just the words themselves.  It tells me that the day was hard for him, and that we’ll talk about it on his terms.

Behavior is the communication of need.

April only comes once per year. What next?

April only comes once per year. What next?

post 11

(Image is a handprint, with each of the four fingers shown in a different color. The words on the fingers read: “love”, “awareness”, “acceptance”, “knowledge”, and “support”.  The word across the palm reads: “Autism”.)  This image is the property of the author, and should not be used without permission)
I do have a store on Zazzle with this image, and all commissions from the purchases are sent to the Autistic Self-Advocacy Networkhttps://www.zazzle.com/autismacceptance

​I’m having a hard time with this post, because I feel as though I have several points to make and while they are all connected, I don’t want any of them to be muddled by the others.

It’s April, and for families of people on the autism spectrum, things get a little more difficult.  It’s not because we don’t want awareness, but it’s more that what we really want is true change for the other 11 months of the year.

Blue lights won’t change the fact that society expects my children not to stim.
Blue lights won’t eliminate the barrage of sensory-overloading stuff that hits the boys and me every day.
Blue lights and awareness walks are NOT going to guarantee that my kids have services throughout their lives.
Blue lights, awareness walks, and puzzle piece logos are not going to ensure that my kids feel successful in their lives, nor will they guarantee employment opportunities or housing.
None of those things will guarantee that the local constabulary has any freaking concept of how to approach people on the autism spectrum or with other cognitive differences.
None of these things guarantee a life where my kids are understood by the world. And this branding of autism in a neat and tidy puzzle-piece-shaped package is certainly bound to drive fundraising efforts, but that is only a good thing if the funds which are being raised are actually going to advocacy and therapies and jobs programs.  A friend of mine did bring up a valid point, however.  The branding of something and the one-stop shopping of a website that many people have heard about and the awareness walks do bring the subject into the light for those who do not know what autism is or how it affects people. And this makes for an interesting introduction.  Five years ago, I had no idea what it was.  And while I might be vaguely aware of it had I not had children on the spectrum, I wouldn’t have really paid too much attention to the issues surrounding a lifelong difference from the rest of the world.

So where do we begin, in an effort to move past mere awareness and into understanding and- dare I dream- acceptance?

I have a few ideas on this matter.  I know you’re shocked by this…

Step 1) Find an alternative to the blue lights.  It negates the many girls and young women on the spectrum who go undiagnosed because autism presents differently in girls than it does in boys.  I’m not saying awareness is bad, but awareness only goes so far.  And when clinicians can’t even figure out how to diagnose girls with autism, then the blue lights are clearly sending the wrong message.

Step 2) Talk to people who are autistic about what they want, rather than making assumptions. The advice that follows below comes from a place of seeing what impacts my children and some of the people who I know, but I can’t speak for everyone.

Step 3) We need education for anyone working with the public- teach police officers, EMTs, teachers, civil servants in general what autism can look like, what is at the root of certain behaviors, and how to support people in the best possible way.

Step 4) Inclusion, inclusion, inclusion.  It matters how children see those who are different.  I am not in any way saying we should teach children to ignore differences, because that’s the wrong idea.  What I’m saying is that it has proven successful to have integrated classrooms, and that the integration benefits everyone.  Children who are neurotypical grow up seeing their peers as just that- peers. They don’t see them as “that kid who stays in the special ed room all day”. That’s how it was when I was a child, and kids are cruel to those they don’t understand. Actually, so are adults for that matter. The IDEA (Individuals with Disabilities in Education Act) is currently under threat and we must fight to maintain rights for all students to an equal education.  I found some really positive information in this article about classroom inclusion.

Step 5) Did I mention inclusion?  Well, it needs to happen in the workplace as well.  Here’s the thing about people on the autism spectrum; many are good at repetitive tasks and at spotting minute differences in things.  It is common for people with autism to have something that they are passionate about, and they will put their whole being into studying that passion.  There are so many amazing qualities that fit incredibly well into many companies.  Fortunately, some of the larger corporations are starting to understand this, and are adopting programs for hiring people on the spectrum.

Step 6) I suppose this should be step one, actually… we as caregivers need to sit down, shut up, and let our loved ones be the tour guides.  They have a LOT to tell us, whether verbally, spelled out in fridge magnet letters, pointed to on a PECS board or typed out on a laptop.  They have a lot to show us about the world, about what they want from that world, and about what they are willing to accept.  Trust me when I tell you, my children are much better at telling me what they need than I give them credit for much of the time. It’s just that we, as all-knowing ADULTS have a wee tendency to decide we know better.  Sometimes that is true (look both ways before you cross the street to check for cars, etc), but other times we can actually get in our own way.  When we look at the “why” behind a behavior, rather than simply trying to put a stop to said behavior, things are going to go much more smoothly.  And while no blue light can guarantee that, I can.

Step 7) Public spaces have got to be more “friendly”.  By this I mean let’s take a long hard look at things like lighting, smells, number of people in a small space, weird sounds, and overall volume.  These are all things that can make a space utterly intolerable.

Step 8) How we interact matters.  Tell me something, Mister April is Autism Awareness Month, when you greet someone for the first time, do you put out your hand for a handshake and expect them to look you in the eye?  Are you wearing Axe body spray or heaven help me, Polo cologne?  Are you standing just too close or expecting the other person to use a quieter tone of voice when they say hello back to you?
Yeah.  You’re doing jack squat for being aware of anything beyond your bubble.  First of all, it really is cool to ask whether a handshake would be okay.  No, that cologne does not smell good, nor should you have used the scented shampoo, body wash, and deodorant to go along with it.  Please take two steps back, and yeah, I’m using my “outdoor” voice because if I’m autistic then chances are I may not have the same sense of volume that you do. I’m NOT going to make eye contact with you- that’s me talking now. Did I ever tell you about the boy who held my face still and forced me to make eye contact with him until I cried?  I was about 15 at the time and we were dating. I was forever altered by that interaction, and carry the emotional scar as a reminder of who I am and what I can or cannot do. And eye contact is very painful for me until I’ve had a chance to really sense who you are and what’s behind those eyes.

Okay.  That’s a lot of information.  Let’s take a step back and change tone for a moment.

I have to say that I’m incredibly thankful for some things.  First of all, that I have a partner who gets what I mean when I tell him that all of “this” is my fault.  He loves and supports me, with all of my oddness, and helps me to celebrate the great things too.
I have a job in an agency whose vision is a world where all people know they belong.  I mean, come ON, that’s awesome.
I run the Autism Lending Library which is pretty much my calling. And I get to help families find funding for the various equipment, recreational experiences, and basic needs that come along with raising someone with a developmental disability.
I have really incredible friends who keep telling me they want to keep learning about this stuff and who don’t say I’m crazy when I say I’m going to write a book.
Did I mention that I’m going to write a book? Apparently? In all my free time…
And more than anything, I’m thankful that even though organizations like Autism Speaks has a very very long way to go, they are starting to flip the script.  And if you know anything about raising someone autistic, you know the script is all there is some days.

LETTING OUR CHILDREN BE OUR TOUR GUIDES

post 10

(Above is an image of five people at a table, all reaching one hand in for a “high five”)

Okay, so literally no IEP meeting ever in the history of IEP meetings looked like this image. But I digress…
​ (By the way: IEP= Individualized Education Plan)
Oh my, IEP day.  It’s almost as daunting as D-Day (diagnosis day), only we get to relive it every single year, with mid-year reviews just for fun.  Because who doesn’t love big scary meetings on a biannual basis? <this is sarcasm>

On this particular day, we were meeting with the chairperson for the Committee for Special Education (CSE), the autism specialist, the school’s principal, speech therapist, school psychologist, occupational therapist, OT assistant, special education teacher, physical therapist, and Wonder Boy’s teacher. Add myself and my husband to that mix and you’ve got one really full table.  That’s right- there were twelve of us at this meeting.

It’s really no wonder at all that parents and caregivers are completely overwhelmed by special education.

Let me start by saying that at every single one of these meetings (and we attend them for Speedy as well), I thank the team for being a part of Team Wonder Boy (and Team Speedy). This really sets the tone, and it means that his parents are the first to speak.  This is a power move, make no mistake about it.  I do this very deliberately, because I want the very first words to be positive.

Once all of the introductions have been made, which alone takes about 15 minutes because there are so many of us there, we hear first from the primary teacher.  We are then asked whether the things she is seeing in the classroom are a good reflection of the boy we know and love at home.  His teachers are incredible, and yes, the boy they see is the boy we know at home.

Next, each of the therapists and various other Highly Qualified Professionals reads from their notes about his progress and regressions, and we spend time discussing what his services should look like for the remainder of the school year.

Then the big news came: while his progress has been notable, he shows enough regression data (where they track how much he regresses during each school break) to qualify for a 12-month IEP.  Wait, what?
My jaw hit the floor.  I was truly not expecting to hear those words at all.
We were asked about the plans for the summer, and we explained that we’d found a great program for the boys for the summer.  A camp with a 3-1 ratio of kids to counselors, one which works on skill building and allowing kids with disabilities to be kids first and foremost.

This was an epiphany moment for me- I realized that there’s something all special needs parents have in common.  You learn, quite quickly, to protect your child’s services fiercely.  They’re not always easy to come by, and in some cases are hard won.  So when the CSE chair asks you whether you’re declining a service, you may be hard pressed to confirm.  It took me a good five minutes, and a LOT of prodding on behalf of the CSE chair, to actually say out loud that we would decline summer services through the school district.

Another discovery came of that meeting.  During the course of the meeting, the speech therapist talked about working with Wonder Boy on his social skills.  I came right out and said that unless they could produce a child with a strong interest in all things narrated by David Attenborough, he really wouldn’t be interested in a social life.

I couldn’t have been more wrong.

It’s not easy for me to admit when I’m wrong, and I think that’s a fairly typical human trait.  We enjoy being right, especially about our own offspring.  I made an assumption that a lot of people do about autistic children- that they’re not interested in friendships.  And this one really shocked me, because it’s not like me to go so astray on something like connecting with other people.  But I did.  And thank goodness for a therapist with a poker face, she didn’t call me out on my assumption.
My correction came a week or two later, when we had all gone to the park.  Our two youngest boys were playing on the playground, and saw two children who were more or less the same ages.  And something really beautiful happened- Within seconds, Wonder Boy walked up to the kids and in a way that only our special kids can, shouted his name in the face of one of the kids.  He asked the name of the younger child, and then the boy’s older sister spent time teaching WB how to say her brother’s name.  After some time playing together on the playground, Wonder Boy sat down at the picnic table with the girl and asked her questions about herself.  He found out that she was a seven year old girl who had just moved into our neighborhood with her family.  He started the conversation with her, and the two of them chatted as though they were a couple of middle-aged coworkers who happened to run into each other in the supermarket.

Let me take a moment here.  HE started the conversation….
Wow.  It wasn’t at all that he wasn’t interested in socializing, rather that he needed to be given the freedom to do it in his own time.
I was speechless, and was reminded immediately of something that I talk with families about when they seek help at work.  These kids of ours are incredible tour guides.  We work hard to prepare them for the next stages, and we provide them with a whole rainbow of services, and at the end of the day they have the ability to completely shock us with what they DO with all that information.

The thing that I’m taking away from all of this, and I hope you will too, is that we must see the potential.  We must presume competence.  And lastly, we must believe in ourselves and our children.  They have beautiful things to teach us, if we just stop talking and let them.