Archive | Uncategorized RSS feed for this section

Dreams with plans

2 Apr

I’ve taken a huge break from blogging as I’ve been adjusting to life as a new mom. My sweet girl is 8 months old now and today, World Autism Awareness Day, seemed like a perfect reason to jump back into The Autism Onion.

 

This year I am more aware than ever of the need for on-going intervention. Autism is life-long so behavior based strategies must be, also.

By nature, we do what works. Rarely do people spontaneously decide to make huge changes in their behavior if what they’re doing gets the results they want. Short of some spiritual awakening, most people don’t just up-and-change the way they have always lived. Similarly, our kiddos with autism are not just suddenly one day going to start taking care of themselves and having conversations with people and making meaningful relationships. These things must be taught. These things must be purposefully targeted and cultivated.

It kills me when families have grandiose daydreams for their special needs loved ones with absolutely no plan of how to get him or her there. “Oh I want him to get married someday!” “I want her to have a job someday!” “He will live independently as an adult!”  My question is simple: How? How are you going to get your child from A to Z? Parents can sometimes get caught up in the utopia without dealing with reality. The devil is in the details, my friend. You cannot project an idealistic lifestyle for your child without taking all the steps to get there. No one magically goes from A to Z. You have to go from A to B, then to C, then to D. And eventually if you work hard enough maybe your child will reach that Z you’ve always dreamed of.

Yes, this year I’m aware of the hollow fantasies families hold for their special needs children without any real plan of how to get them there. On-going intervention is KEY! Pushing them out of their comfort zones is key! Moving them beyond their own universes into the world of others; the world of rules and order and of social norms. (And before people start bashing me for being a “neurotypical” who “hates autistic people” let me just say: for ANYONE to succeed they have to move beyond their comfort zone, work hard to promote growth and change, and do things they don’t necessarily want to do.)

This year I’m aware that we need to offer life-long support to our children and families affected by autism. Autism will not go away or magically “get better”. We must implement appropriate strategies every…single…day to help our kids get where we want them to go. It’s hard work, that’s for sure. But it’s worth it… Is it not?

preparation quote

Tags: , , , ,

The cool thing- Part 2

6 Oct

When I last left off I was noting how cool my job is for the diversity it exposes me to. Another awesome part of being a behavior analyst is that my job is often FUN!

 

Now, of course I have those days where I’m exhausted from the screaming and crying and blocking a kid from beating me up….Or those days where I feel defeated and inadequate. But, on most days I get to do things that people would DREAM of calling “work” and I get to have fun.

 

I regularly play board games at work.  I regularly go to parks and Chuck E. Cheese for work. I go to bounce-house places and race my clients down the slides. I’ve gotten to have dance parties and play video games at work. I’ve gone to the mall or Target or shoe stores for work. And being a school shadow for 4 1/2 years meant tons of class parties, movie days, and recess!

 

There have been a number of times where, in the middle of my sessions, I stopped and thought “This is my job? I am getting paid to do this right now?” That saying “Do something you love you’ll never have to work a day in your life”… That’s how I feel about being a behavior analyst. Besides the obvious investment I get to make in kids and their families, it’s neat that the day-to-day is actually enjoyable and exciting a lot of the time. Just another benefit of my job! I count myself very blessed to be able to do something fulfilling and also just plain fun.

 

dowhatyoulove

Tags: , , , ,

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.

Tags: , , , , , ,

Reinforcers?

10 Jul

I compiled a list of odd things I’ve ACTUALLY used as reinforcers with kids I’ve worked with:

  • Nutri-Grain bars
  • Sips of my Starbucks coffee (with the parent’s permission, of course)
  • Taking pictures together
  • Pinching a kid’s cheeks (yes, he liked it!)
  • Access to the window to watch gardeners
  • Painting fingernails

And probably the oddest thing I’ve used…

  • Sitting in my trunk (I drive an SUV so it’s spacious!)

My anniversary…

15 May

Today marks my 2 year wedding anniversary, and I thought I’d share a post on how my brother made my special day extra special.

After I got engaged I wondered what role Dylan would play in my wedding. I didn’t know if he would be able to be part of it. But, I’m extremely attached to all 4 of my siblings so it was important to me that he be there to share in my life-changing event. Naturally, I made him my ring-bearer.

Leading up to my wedding I created a social story and made sure he read through it each day, in preparation. The more you prepare a child for what is going to happen, and what is expected of them, the less anxiety they have surrounding the event, and the higher the chances are for success. Then, my family had him practice wearing his tuxedo, which he hated at first.  We systematically shaped his tuxedo wearing behavior by having him wear parts of it at a time to earn trips to his favorite theme park. I even bought him reinforcers for the day of the wedding: cotton candy, gumballs, and his favorite hand-soaps (<—- I have no idea why he loved soaps, but he did).  And, I insisted that he be a part of the rehearsal, so that he could get in-vivo practice, and experience reinforcement for his good behavior to make him more likely to repeat that good behavior the day of the wedding.

I brought a copy of the social story on the night of the rehearsal, and he was absolutely obsessed. He loved it! I made sure to give him tons of verbal praise (and some edible reinforcers too) for his behavior that night. He did so great! He waited his turn. He walked perfectly. He stood nicely. He was compliant. PERFECT!

DSC_2376sm

Dylan reading his social story.

The day of my wedding was finally here…Dyl wore his tux without protest. He stood nicely and smiled for pictures. He waited for his turn to walk. And, (unbeknownst to me at the time) as he made his way down the aisle he stopped to try and blow out a few candles. (You may recall from my previous post, he LOVES anything birthday related, and I guess candles remind him of birthdays 🙂 ).  It made for a very cute memory for those who saw it. Then after the ceremony was over, I made sure to give him tons of praise for how great he did.

As planned, Dylan left before the reception began. As he was walking out with my step dad I yelled across the chapel to him, “Dylan”. He turned around and I told him, “You did a good job today, buddy. I love you.” Then I blew him a kiss… he blew me one back, and he skipped away.

Ah, to reminisce… Brings back such special memories. I am so grateful my little D could be part of my wedding day. There is nothing more wonderful than having all the people I love there with me on my wedding day.

One final pep-talk.

One final pep-talk.

 

Me with my ring-bearer.

Connecticut

16 Dec

First and foremost…I am heartbroken for all those suffering after Friday’s inexplicably horrible events. My prayers go out to everyone effected, directly or indirectly. I just can’t imagine their pain.

Now, just like in the Colorado shooting last summer, people are speculating that the shooter was autistic  (in addition to other things). I wrote a post when people suspected the Colorado shooter was autistic, which you can read here.

Here’s a blurb from that post that I’d like to re-iterate in light of the Newtown horror.

“Not every person “lacking empathy”, as some say, is autistic! Not every socially isolated person is autistic!!

Don’t take my word for it…let the DSM (Diagnostic and Statistical Manual of Mental Disorders) speak for itself!

Mental illnesses with lacking empathy as a symptom:

1. Narcissistic Personality Disorder 301.81

2. Antisocial Personality Disorder 301.7

Mental illnesses with social isolation as a symptom:

1. Schizoid Personality Disorder 301.20

2. Schizotypal Personality Disorder 301.22

3. Avoidant Personality Disorder 301.82

Actual (abridged) criteria for Autistic Disorder:

I. (A) qualitative impairment in social interaction (In the description it gives the following examples: not actively participating in simple social play or games, preferring solitary activities.) <——Notice it does not say “murdering people”

(B) qualitative impairments in communication

(C) restricted repetitive and stereotyped patterns of behavior, interests and activities

II. Delays or abnormal functioning in at least one of the following areas, with onset prior to age 3 years:

(A) social interaction (B) language as used in social communication (C) symbolic or imaginative play”

Now, that’s not to say that this Connecticut man didn’t have autism. I never met the guy! I have no idea if he did or not. But, in this case, autism would be co-morbid with some other diagnosis (such as a personality disorder, which the media has also already identified as the case).  In addition, it’s very likely psychosis played a huge role in this as well.

I  know parents are going to be up in arms over the media even mentioning the word “autism” in the same sentence as this massacre. The truth is, maybe he was autistic! That really isn’t the issue though. This man was clearly severely mentally ill, likely with several untreated, or under-treated,  diagnoses.

I got into the mental health field out of a passion for understanding how people become who they become, and a desire to help people become well. This world is so broken… So many people suffer from mental illness. This isn’t the platform for me to share all my thoughts on this…but for a moment can we all just stop fighting? Whether you’re pro-guns, or anti-guns, whether you’re Christian or atheist, whether you believe in mental illness or not, whether you’re terrified your autistic child is now stereotyped as a potential killer or not, whether you’re Republican or Democrat, whether you’re man or woman, or blue collar or white collar, or angry or sad or a little bit of everything….. can we remember what makes us all the same, rather than focusing on what makes us different? Let us love one another. Your words and actions are such powerful tools…do you know all the power they possess? Please don’t make them weapons, even towards those you think so deserve it.

One thing we can all agree on is that the victims of Friday’s shooting did not deserve this…and their families are experiencing pain and suffering only few people can understand.

Newtown-CT-Memorial

Happy Birthday….to me!

29 Oct

Well, today’s my birthday. And this morning I got an awesome present from Sharon and Gracie over at Shout Out Online Magazine. Their November issue came out today, and they featured yours truly as the Sibling of the Month.


I was asked to be featured as Sibling of the Month a while back, and felt 1) So excited Shout Out Online Magazine exists! 2)So honored to be a part of it! And 3) So happy to get to share my story!

Shout Out Online Magazine is a monthly magazine for siblings of children with Autism. Their goal, “is to create a special place where siblings can go to express how they feel, to laugh, to cry, to feel inspired and most importantly…know they are not alone.”

Their audience is mainly children and pre-teen readers. They feature articles about various topics; this month focuses on friendship. They have an “Ask Dr. T” section, quizzes, polls, book reviews, and a YOU Shout Out section for readers to join in and see their answers posted.

Shout Out Online Magazine brings siblings together, and let’s them know they matter and they are heard. Sharon and Gracie are doing an amazing thing, and I really am honored to be featured in their November issue.

 

Check out the article here.

 

And please feel free to leave some love for Shout Out Online Magazine. You can find them on Facebook here.

Tags: , , ,

Confidentiality

19 Sep

As I discussed in an earlier post, I was attacked for my use of my brothers name and picture when sharing about his diagnosis on my blog. Confidentiality is a hot topic for parents, and people on the spectrum. And by “hot topic” I mean scorching, blazing, on fire!

Here’s the breakdown of what I have gathered from both sides of the coin (click to enlarge):

As for me, it’s not that I don’t see the benefits of keeping things confidential; I do. And it’s not that I completely agree with everything Pro-Openness people think or do;  I don’t. But, I obviously lean to the Pro-Openness side. So after the heat I took for it from people on Tumblr, I reached out to a woman who writes a weekly column (for a big newspaper) about her experiences with an autistic son. She has faced backlash for publishing his photo along with her articles a few times, so I knew she would have some words of wisdom on the topic. She wrote me back right away, and gave kind words of encouragement. One theme in her response was that she has come to accept that she will not please everyone, and she doesn’t strive to.

It’s true. Anything that anyone says/writes/does  is up for debate. But, just because that’s the case does not mean I need to change my story, or the delivery of my story, to fit other people’s molds.

In the end, I think each person has the right to make their own decisions about confidentiality. So, if my stance doesn’t align with yours, I hope you’re able to refrain from judgment, ridicule, or condemnation. And, if your stance doesn’t align with mine, I promise to do the same.

Tags: , , , ,

Siblings- Part 1

6 Aug

In the July/August edition of The Therapist magazine, Dr. Ira Heilveil wrote about the role of a Marriage and Family Therapist in the lives of those affected by autism. He discussed the ways each relationship within the family unit might be impacted.

Dr. Heilveil says siblings may:

-Suffer real or perceived withdrawal of attention from parents

-Engage in maladaptive or excessive “good” behaviors

-Fear that autism is contagious

-Fear that their own children will someday be autistic

-Grieve the brother or sister they wanted to have

-Feel ashamed that their sibling is not like the siblings their friends have

This is one of the many layers within the autism onion: siblings.

For me, there is fear for the future. My parents won’t be around forever, so what then? How will life be for me as a care-taker someday? There is an intense investment in my brother’s progress. The better he does now, the better off things will be then. There is pain, sadness, heartbreak. There is a sense of responsibility; I’m his oldest sibling. I’m trained in ABA. There is confusion. There’s anger when people don’t do right by him. Then there’s anger when his disability overshadows the needs of other family members.  There’s disappointment when others fail him. There’s frustration that I can’t do more to help him. Then there’s frustration when life revolves around him at the expense of other people. There’s pride in his accomplishments. There’s compassion and sensitivity. There’s hope. There’s joy in his affections. There’s just so many things. It’s a complex, tangled ball of emotions.

Tags: ,

Elvis and Autism

23 Jul

I was just hanging out at home, relaxing on the couch. The Encore channel was on in the background showing an Elvis and Mary Tyler Moore movie, Change of Habit. When all of a sudden, I heard the key word “autistic”.

Elvis plays a doctor in this movie, with Mary Tyler Moore as his assistant. A little girl is brought in to treat her deafness. After hearing of the little girl’s history of abandonment, Mary’s character suggests the girl is not deaf, but actually autistic. She states: “Sometimes when a child is rejected very early in life they crawl inside themselves and shut out the whole world, as if they’re trying to punish the rest of us, along with themselves.”

After trying to turn the girl’s head towards her, she goes on to say, “You see how she resists any physical contact? It’s typical of autistic frustration.”

Elvis suggests a new treatment, “Rage reduction” while Mary asserts, “I’d rather try patience and love.”

After failing to build compliance with the patient on a shape sorting task, Elvis steps in and performs “rage reduction”; a technique in which he holds the girl while she screams, and cries, and flails to try to get away. He scoops her up and says, “You gotta learn to start lovin’ people. I’m gonna hold you ‘till you get rid of all your hate. Get as mad as you can. You can start to give love and take love.”

As she continues to tantrum, Elvis tells her, “I love you, Amanda. Get as mad as you can get. Show us how mad you can get. Fight! You can do better than that for someone that loves you. That’s a girl! Get mad. We love you.”

After enduring several hours of this procedure, she eventually speaks her first word “mad” and is magically cured!! She becomes compliant, giving perfect eye contact, responds to her name, and even enjoys physical contact with others. Her “hatred” is gone.

So…what to make of all this…

Well for starters, it’s an amazing snapshot of the myths and misconceptions people had about autism in the late 1960s. People were so misinformed, and autism was so misunderstood. The disorder was blamed on neglectful or unloving parents. The treatment revolved around freeing the frustrated child of their hate and anger. And this movie suggests a cure exists. Just hold your child until they can fight no more, and all of the sudden they will be happy and compliant children!

For me, watching it was equally astonishing and interesting, not to mention kind of humorous. (Could people have really believed this stuff?!) How awful for parent’s raising autistic children in this era! It was uncommon and un-researched. How judged parents must have felt. How many ethical dilemmas they must have faced when deciding on treatment for their kids. It’s shocking how we used to think about autism. It’s amazing how far we’ve come in understanding this disorder. While at the same time, I realize how much we still don’t know.

Tags: ,

← Older Entries