The cool thing- Part 1

12 Jul

There are so many cool things about my job besides, of course, the whole I-get-to-make-a-difference-in-people’s-lives thing. When I’m not enjoying the satisfaction of teaching a kid how to communicate or how to do basic life skills independently, I’m enjoying the little aspects of the job. One cool thing about my job is: it gives me exposure to all sorts of diversity.

diversity

I work with all different ages, races, religions, family structures, and socio-economic statuses. I once worked with a kid at a Jewish temple. I ate my fair share of challah bread every Friday and knew the Ha-Motzi word for word. Then I spent several years shadowing kids at a Catholic elementary school.  I went to Mass every week with my kiddos, and could recite the Hail Mary in my sleep. I’ve worked in Christian households, and Buddhist homes. I’ve worked with families who live in bona fide mansions with home theaters and high-tech security cameras installed everywhere. And I’ve also worked in mobile homes and single bedroom apartments. One of my former families owned half the homes in a well-to-do housing neighborhood while another squeezed 3 people into 1 bed because all they had was a rented room in someone else’s house. Some of the families I’ve worked with have stay- at-home moms (or dads!), while others have both parents working and live in nannies. Some even have both parents at home, or extended family that lives with them. I’ve worked with families struggling so much financially that they kept several rooms without any working light bulbs. And others who were so wealthy they offered to pay me to travel to other continents with them. I’ve worked with married parents, divorced parents, single parents, adoptive parents. I’ve worked in a home where the divorced parents still lived together. I’ve worked with families who are Caucasian, Mexican, Ethiopian, Kenyan, Korean, Chinese, Vietnamese, Taiwanese, Greek, and so many more. I’ve worked with parents who share with me their own medical and mental health issues. I’ve worked with families dealing with divorce, unemployment, adoption issues, incarceration… I’ve worked in a home where I had to make multiple child abuse reports. I’ve worked with people from all walks of life, with all different backgrounds.

It’s so crazy the disparity between families that I come across. And, the longer I work with a family, the more I get to learn about them. I learn about their traditions, and holidays, and beliefs, and family dynamics. I learn about their values and their struggles; their faith and their lifestyles. I feel so educated, while at the same time, knowing there is still so much to know and learn. It’s really fascinating, the wide array of people and circumstances my job introduces me to. And, I know many people regularly interact with different cultures, religions, and socio-economic statuses. That’s nothing unique. But, the nature of my profession is to be in people’s private sanctuaries (their homes), working hands-on with what they hold most dear (their children). I’m there with such consistency over such long periods of time, that I believe my job offers me a deeper insight into the diversity so many of us may only see on the surface. So that’s one cool thing about my job… I get the opportunity to learn about others in a profoundly personal way I wouldn’t otherwise get to.

Speak for yourself…

8 Jun

“Autism isn’t a tragedy, ignorance is.”

“I don’t suffer from autism, I enjoy every moment of it.”

“I don’t suffer from autism… I suffer from ignorant people.”

There are countless websites, online groups, and Facebook pages dedicated to these taglines. These sites, run mainly by people who identify as being on the spectrum (and others run by parent advocates) argue that autism is not bad, sad, or unfortunate. It does not cause people to hurt. Autism is a beautiful diversity and should be celebrated. And those who would say otherwise….They are “hate-mongers”. Wishing your child didn’t have autism, or hoping for a “cure” makes you unloving, and unaccepting, according to these sites.

Here’s the fundamental issue I have with these arguments….

Your experience does not give you the right to deny another person’s experience.

Your experience does not negate the experience of another person. Matter of fact, your experience doesn’t actually have anything to do with another’s.

Your experience does not give you the ability to make blanket statements for all people in similar circumstances.

I just can’t fathom that someone could look at a child with autism screaming, crying, bashing his head into a wall until it bleeds and say “That’s not tragic” or “They’re not suffering because of autism.” I can’t wrap my head around someone seeing the news stories of another dead autistic child because he wandered away from home, and say that child, or their family, didn’t suffer at the hands of autism… Instead they would argue that they suffered at the hands of the “ignorant” public. I can’t comprehend that someone could watch a child with autism be unable to get their needs met because they can’t communicate, and say that his inability to communicate is not the tragedy… those around him not being able to read his mind is the tragedy.

Honestly, I’m of the opinion that (while I know there are many great qualities about it) autism causes an enormous amount of pain, struggle, and difficulty for A LOT of people. Those diagnosed, and their families. I’ve seen it. I’ve lived it.

And, with that said, I will also make clear that I know not all people affected by autism are of the same opinion… and that’s okay!

Having an opposing view on the “tragedy” or “suffering” related (or not related) to autism does not threaten me, nor does it even bother me… when you are talking about your own experiences. But representing your opinion as fact on behalf of the entire autism community is wrong, unfair, and offensive.

Just how so many of these same spokespeople say “Autism Speaks doesn’t speak for me”…. You “advocates” don’t speak for ME, my brother, or other people, either. NO ONE speaks on behalf of everybody, and the sooner people recognize that, the sooner we can stop waging wars on who is “right”. You speak about your experiences, I’ll speak about mine. You hold opinions based on your experiences, I’ll hold opinions based on mine. And even when our whole-hearted beliefs don’t align, that’s okay. They don’t need to. Let’s respect that our own life experiences don’t override the experiences of another person.

WAAD

2 Apr
WAAD
As most of my readers know…today is “World Autism Awareness Day”. I didn’t even realize it until yesterday when my sister reminded me. And, while it may seem obvious to write about my brother today, given the topic at hand, I’m actually going to write about some other love bugs that have changed my life.
My love for these 2 kids can’t be described through a blog. But they’ve had a remarkable impact on my life, and my story with them is worthy of being shared. For parents that ever wondered if ABA therapists have favorite clients… they do. And these boys were mine.
I had the pleasure, and honor, of going to school with these 2 kids for many years, in addition to working with them both at home. I worked so many hours with them both that I got to know them pretty intimately, and our bonds were unlike any other I’ve ever had with my clients. They became family to me. We had our own inside jokes. We had our own little habits and routines. We had our own special relationships.
Together these boys and I grew. They grew from cute little kids to handsome big boys. I grew from a shy, somewhat green therapist to a confident, experienced BCBA applicant. They pulled me out of my shell. They stretched me to become better, clinically and personally. They gave me an endless supply of funny stories, priceless moments, and hilarious memories. They knew what I expected from them. They knew how I said things, and even how I wrote. They knew my family. They knew my fears, and what made me happy. They knew me. And I knew them… I knew their favorite everything. I knew their hot buttons, and what made them tick. I knew what excited them. I knew how each of them learned material best. I knew how to modify almost anything to be presented in a way they could understand. I knew how to influence their behavior from across the room, with only a glance. But they knew how to melt my heart with only a smile. My hold over them was nothing compared to their hold over me.
In the process of falling in love with these kids, I also grew to love their family. And because we spent so much time together, their family really got to know and love me, too. I was able to share in the life experieces of this family, and they shared in mine. From engagement, to marriage, graduations, first communions, birthdays, surgery, and even family deaths… We lived a lot of life together. I consider it a unique privilege to have been so included in a family that wasn’t my own.
So… on this autism awareness day, I’m reminded of how deeply I love these 2 angels, and always will. No matter how many years go by, or how many new kids I work with, there will never be a repeat of the relationships I created with them. While forming a bond with any child is special, forming a bond with the population I work with is exponentially more precious. So I am “aware” on this day (and everyday) , that to truly connect with those who have autism… that is a blessing beyond compare. And I am “aware” of just how special these 2 boys are, and how lucky I am to have been part of their lives.

Baseball Season

8 Mar

Dylan started baseball this weekend and had his first game yesterday. He’s playing on a special-needs league and his team is made up of children with various disabilities.

His team doesn’t play against another. Rather, they are divided in half and take turns being at-bat and in the outfield. Each child has a buddy. These buddies are typical children from other teams whose games are immediately following the special-needs game. They also have teenage volunteers and parent volunteers. His team has no practices; only games. There are no strikes, and no outs. Each child gets to bat until they hit the ball, and then they run all the bases.

This weekend Dylan played for the first time ever, and he did amazing. The cheering was so exciting for Dylan, even when the crowd wasn’t cheering for him. He loved dancing around in the outfield, watching his shadow, and pretending to run alongside the other players as they rounded the bases. He imitated a perfect ground-ball stance when it was modeled for him. And he grabbed and threw the ball when prompted.

For his second at-bat (ever, in his whole life), he stepped up to the plate… And whacked the ball. We all screamed! He smiled ear to ear, and in typical Dylan fashion, he let out a high pitch squeal and began running the bases (although never quite touching them).

Watch Dylan’s home-run here.

It was incredible. His first time playing baseball, and he hit the ball! Not from a tee…an actual coach-pitched ball! We were so proud of him. Not only for his incredible hit, or for running the bases. But, for engaging in a new social activity, following directions from strangers, taking turns, and attending to a task that isn’t in his usual repertoire of preferred activties. Playing on this team is good for him in so many ways, and I’m so grateful this league exists.

AngDylBaseball

Proud big sis with her little “Angel”.

BaseballDyl1

IQs and ID

15 Feb

I recently ran into an issue when considering “Intellectual Disability” diagnoses among those with autism. Intellectual Disability (ID) was formerly known as “mental retardation”. Diagnostic criteria looks at adaptive skills in addition to IQ scores. Both adaptive skills and IQ are measured using standardized tests.

And therein lie the problem.

“Standardized” tests, by definition, are given in the exact same way for all it’s test takers. The problem this poses to those with autism is obvious (or at least it is in my mind, anyways). Children with autism are not like every other test taker… they all have unique strengths and challenges.

Many children with autism have attention issues. While they may notice the tiny piece of frayed rug, or the patterns in the painting on the wall, they may not be attending to the instructions given to them. Or, while they may be able to sit for a couple questions at a time, they may get restless or require sensory breaks in order to sit for longer periods of time.

Another aspect of standardized testing is that it relies on a child’s ability to follow directions. Many times children with autism do not comply with instructions, not because they don’t understand them, but because they don’t want to. How is the administrator going to know whether it’s a compliance (behavioral) issue, or an intelligence issue? They’re not… so it will just be marked as an incorrect response.

Let’s also consider the response time aspect of testing. Perhaps a child does know the answer, but takes longer to process the question and produce a response.

Now, I’m not saying that testing considerations are the only problem and otherwise all autistic kids would show high IQs.  What I’m saying is that there is no way to know for sure whether a child doesn’t know the answer or just isn’t providing the answer. And, clearly issues with attention, compliance, and response time make it problematic for people to function in the world we live in. So deficits in those areas should be, and need to be, considered when looking at the overall functioning of the individual. But, what I am suggesting is that these tests do not look at the overall WHOLE person, and they have no way of truly measuring the intelligence of a child with autism. They simply measure an ability to respond to questions. And, responding to questions is not synonymous with “intelligence” in my book.

To me, it would be like giving an english test to a spanish speaking child. They will score pretty low on many of the questions, not necessarily because they don’t know the answers, but because the questions aren’t being asked in a way the child can understand.

Giving a test made for typically developing children to ATYPICAL children does not provide a valid measurement of intelligence. That is my whole-hearted belief. And using the scores of such a test to determine a secondary diagnosis of “Intellectual Disability” is misleading, and an incomplete representation of the child. Einstein said it best….

genius

(PS- why is IQ so important anyways? If the child already has an autism diagnosis, we already know they have deficits in socialization and communication. What value does an IQ score add?)

Cruisin’ with autism

19 Jan

Almost exactly 3 years ago I embarked (literally) on an adventure with one of the families I worked with at the time. The family paid for me to go on vacation with them, so that I could work with their son. He has autism and I was one of his in-home ABA therapists, so the family thought it would be helpful to have me around for their international vacation. They paid for all of my travel expenses, and they also paid me for my time. It was a really unique experience, and I’m glad I did it.

We took an 8 day Disney cruise to various parts of Mexico, and during my time on the ship I worked almost 12 hours a day with their little guy. We had some 1:1 time in the cabin to do our regular ABA tasks, and then most of the day I would facilitate his participation in the various kids club activities, and I would also join the family at all of their meals. We worked on lots of things like:

  • Behaviors- managing his self-stimulation, aggression, and non-compliance
  • Meal time- sitting appropriately, waiting, trying new foods
  • Socialization- following what the group was doing, interacting with other kids, responding to family members
  • Language- requesting, labeling, lengthening sentences, varying his phrases
  • Academics- Counting, reading, and completing worksheets

Another important purpose for me joining the family was to work with the parents. We worked on things like:

  • How to elicit more language (withholding items until he asked for them)
  • How to reinforce appropriate behaviors (token systems, praise, access to the iPad, etc)
  • How to decrease maladaptive behaviors (extinction, follow through, etc)

While it was an exhausting experience, and it didn’t go exactly as I had expected, it was a really neat way to do my job…..on a cruise-ship! A few weeks after the trip, we had a team meeting and the boy’s mom told everyone how my presence helped decrease her anxiety and helped her enjoy her family vacation a little more. Plus she was still beaming about the progress he had made on our trip (learning to swim with me, and eating several bites of new foods for me). That right there was my validation. I got to make a difference for this family on their vacation. Plus, I not only got to travel to Mexico for free…but I got paid to do it!! It was really neat, and I’ll always treasure the experience. I think the idea of being a traveling ABA therapist is so cool and I count myself very lucky to have gone on the trip with them.

CruisePics

So… I’m sharing this story because I recently learned of an organization that does this sort of thing. Autism Adventure Travel matches up families with special needs children with specialists who would be willing to join them on vacation. The specialists (Occupational Therapists, Speech Therapists, ABA therapists,  Psychologists and more) volunteer their time, in exchange for a free vacation. Autism Adventure Travel (AAT) arranges 3-8 days cruises, including group vacations, and charges families a nominal fee to find the right specialist. AAT not only makes arrangements for the specialist, but they also put together on-board activities, book group excursions on behalf of the families, and plan the entire vacation itinerary!  They provide full service travel planning, with the added bonus of finding “degreed, background checked, and […] experienced” therapists who are willing to volunteer their time for the families. In addition, AAT fundraises in order to help the therapists get to the ship ports so that the families are only responsible for paying the actual cruise expenses. And, this organization is awesome for therapists who would like to travel the world at no cost. Sure, they have to work on the cruise (just like I did), but it’s an opportunity to utilize their skills in a unique setting.

Autism Adventure Travel provides a wonderful service to families who might otherwise not be able to vacation with their special needs child. And they provide a rare opportunity for specialists to travel for free. For more information you can check out their website here.

 

***I was not asked or otherwise encouraged to endorse AAT. The views expressed are my own.

Cancer and Autism

13 Jan

Last week my mom underwent a double mastectomy with reconstruction to treat her breast cancer. Her diagnosis and treatment were obviously a huge blow to our family, and I knew it’d be vital to prepare Dylan for what this meant.

In the days preceeding her operation I looked online for social stories about surgery and recovery. All I found were stories to prepare kids for their own medical procedures, but none explaining what it would be like when Mommy went in for surgery.

So, I created this story for Dylan….

On Monday, January 6th Mommy is going to the hospital.

Mommy has cancer. That means her body feels sick.

pain

The doctors will get rid of the cancer and help her feel all better.

doctors

Mommy will spend the night at the hospital so that the doctors can check on her.

sleeping

Soon Mommy will get to come home!

house2

When Mommy comes home she will be very tired. She will need to take naps.

tired

Mommy will have bandages, so she will have to be very careful when she walks.

There will be new people at home to help pick me up from school.

drop off

These new people will help make dinner and clean up.

cooking

Soon Mommy will feel all better.

I will feel so happy when Mommy feels better. Mommy and Daddy will feel happy, too.

HappyDyl

He read through the story with me and really seemed to understand it. When he got to the bandage page he looked up and asked my mom to see her bandage. We told him it wasn’t there yet, but that soon it would be.

A few days after the surgery I went over to visit and Dylan had a preoccupation with the bandage again. “Can I see my bandage?” he would ask, over and over (incorrect pronoun, and all).  Then he would ask, “Can I see the boo-boo boobie?” so she would show him a piece of the drain tubes. I mean…how could I not chuckle at that?? So that’s how Dylan understands all this. He knows mommy had cancer and that she went to the hospital to fix it. And now, she is at home with her boo-boo boobies. 🙂

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