Summer's here ... so are Daycations...

This week, I spent most of my time at a popular amusement park. As I had my hand stamped and walked through the front gate, I chose a bench to sit on and wait for my friends. I looked around as I was sitting there and thought "What a overstimulating environment!". Imagine what it's like for kids with ASD. First, there are thousands of people in one place ... and with those thousands of people, comes thousands of voices. Second, there's the weather - most likely you're going in the sun and heat. On top of all of this throw in rides, music, food smells, strollers, balloons, and giant fluffy characters! That's enough to make anyone feel overwhelmed!

A lot of the parents I work with still obviously want to take their kids. And I'm certainly not saying that you shouldn't go ... just keep a few things in mind. I've suggested that maybe you don't go on the hottest, sunniest days ... these tend to be the busiest. I'm certainly not suggesting you go during monsoon season, but cooler more overcast days might be a good idea.

If your child wears ear phones for sound, don't forget to bring those along! Just because you're outside, it doesn't mean it can't get loud. Schedule in some quiet (as quiet as you can get) breaks throughout the day - you don't have to go go GO!

Watch your child's reaction to those big fluffy characters - he or she may love them ... but he or she may hate them. They're not for all of us ... they're not for me!

You know your child and if your child likes to ride the rides then think about the lines. Most amusement parks that I've had experience with will allow your child to skip lines with proper approval. Usually you need to do this at least a few days in advance (but I don't know anyone who has just shown up with a note the day of the trip). Ask your doctor, OT, SLP, ABA coordinator, etc for a letter stating your child's diagnosis and why an amusement park may be overwhelming. In the past, we've done this with a number of 6 Flags and Disney World and have been successful in acquiring a pass for the child and usually the entire family. Cutting down on wait time in lines may help make this trip a more positive experience for your family.

Lastly, talk to your child. Some kids benefit from being able to prepare themselves somewhat for an upcoming experience that may prove trying. What will best prepare your child? Will a social story help? Will trying to answer any questions or reassuring any concerns they might have help prepare your child?

What works ... What doesnt ... your kid ... their kid...

When I started this blog, I also started posting on Twitter - hoping to spread the word of my blog, connect with other people in the community, and also gain some ideas for blog topics.  What I've noticed the most is the bickering among members of the autism community - parents vs parents, therapists vs therapists, parents vs therapists.  It's sad, really. We should be working to spread what we know, not denouncing everything else that is mentioned.

This particular blog stems from a conversation I saw between two tweeting parents.  One parent was very excited that her child was going to begin PECS in the coming weeks and was hoping to see a result in functional communication - whether verbal or not.  Within minutes, her tweet wall was attacked by other parents with such things as "PECS doesn't work" ... "don't get your hopes up, it will probably lead to nothing" ... and "my child has been doing PECS for years and we've gotten nothing out of it".  Wow, way to be supportive of a parent embarking hopefully on a new method for their child. Now this isn't a blog promoting PECS (although, I should say I do work with children who use PECS to communicate quite well nonverbally and a few who began with PECS and later developed some type of verbal language).  But just because a method doesn't work for someone else, doesn't mean it won't work for you!!  On the same token, just because a method does work for someone else, that doesn't mean you'll see the same results in your child.  But shouldn't other parents and professionals still be motivating you to try?!

I've mentioned before that my favorite saying regarding autism is "when don't really know what autism is, but we do know how it presents itself".  We also know that it presents it self differently in all of our kids.  And autism aside, our kids are completely different from each other.  Some kids are verbal learners while others are auditory learners. Some kids need more immediate reinforcers while other kids prefer big reinforcers at the end of a chunk of time. Some kids thrive off of PECS and some kids don't seemingly benefit.

That being said, there are certainly some therapies I'm on the fence about and some therapy methods I question - which I hope all of you question therapies before you ok them for your children - but there are still TONS of therapies being offered to your kids.  I'm a firm believer in a behavioral base with other therapies mixed in depending on your child's needs, learning styles, etc.  Just because a therapy doesn't work for little Joey in your son's classroom, doesn't mean your child won't benefit from the same therapy.  And just because little Joey is thriving with a particular treatment, that doesn't mean you'll see the same results ... but if you want to try something, other parents shouldn't be knocking you down!

C'mon people ... support each other! Feel free to share your thoughts and experiences with other parents but don't tell them what will work for their child, you have no idea!  And for Pete's sake, STOP fighting with each other - HELP each other!

Myths about ABA ... What a GREAT therapist should do!

When I tell people what I do, and these people know of ABA, I'm always met with one of two responses.  Half of the people smile and say things like "My son receives ABA and we love it", "Oh my friend's little one gets ABA services" or "Wow, you must love your job".  The other half of the people say things like "Really? Why?", "Don't you feel mean?", or "You really think that works".  When I first started this position, I had first encountered this latter reaction by being given a simple eye-roll by a member of the field not working in ABA.  This obviously made me curious, so I went home to research some anti-ABA material and realized there was TONS of it out there!

I'd like to take this opportunity to dispel a few of the "myths" about ABA I've heard over the years.

1. ABA Workers are Cruel.

This is my least favorite.  We're not cruel, we're consistent and expect quite a bit from your kids.  When all else fails, if you have a GREAT ABA therapist, he or she will ALWAYS follow-through.  

When beginning a program with a new family, we often tell parents that sometimes you may hear your child cry during therapy.  First of all, this is YOUR child so you have every right to check on your child when he or she is crying - however, please do so discretely so your child doesn't see so as not to encourage crying/tantruming when a demand (ie, drill work, sitting at table, following game rules) is being placed on your child.  Any GREAT therapist will encourage you to discretely peek in the room when your child is crying if you feel you need to.  Feel free to talk to your therapist about when they will come ask for your help - for example, I personally call for a parent each and every time a child cries appropriately (ie, fell down).

The reason I say your child may cry during therapy is because often during the first few weeks to months of therapy is when a child will resist the most.  The child is often "testing" the therapist and learning what he or she can get away with and what will gain the attention of the therapist or parents.  Even nonverbal kids know how to stall! Give your kids more credit! In the first few weeks to months, the therapist is trying to establish a understanding and relationship with your child and this can be tough.  However, if you ever truly feel as if your therapist is pushing your child too far - talk to them!  

Just know we truly are trying to help your kids - not TORTURE them!  Please give us a chance! A few years ago, I began working with a three year old boy and he cried A LOT every time we expected him to transition from play to the table.  He would walk on his own to the table and sit, but then cry for at least 5-10mins per transition.  Mom or Dad would peek in (without the little boy knowing) and check on him - as any parent would want to.  After a few weeks, the length of the crying shortened and after a few months it was rarely seen at all.  After working in the house for over a year the mom said to me one day "You know, when you first started I told my husband that our son was loudest and cried the longest when you (compared to the other therapists in the house) were here.  At first, I thought it was because you were a bad match for him.  A year later, I realize that he now has a better relationship with you than the other therapists and you're able to get more out of him.  Thanks for making my son cry."  Maybe worded funny - but it touched me.

2. We teach rote skills.

Yes, sometimes we do teach rote skills BUT this can be for different reasons.  Firstly, we sometimes teach rote skills for safety reasons (ie, the child's address, phone number, mom's name, etc).  Sometimes we teach rote skills for daily living (ie, washing hands).  Many children with ASD learn best when rules or rote instructions are given to them and some of us believe this can come in handy at appropriate times - like safety and daily living skills.  

To understand ABA is to know that we are TEACHING KIDS HOW TO LEARN.  Yes, sometimes we teach the basics in a rote manner, but only to get to more advanced and creative learning later.  You'll see this is most preschools or kindergartens for typical kids.

A GREAT therapist will not teach your kids rote social skills, though.  We obviously don't want children speaking to each other like robots.  We want them to learn how to interact and read others.  But first sometimes we need to figure out how they learn best and sometimes this involves teaching rote skills.  Just know it's used as a means to ends when it is used - it is not the final product.

3. We ONLY do Drills at the Table

No way!  A GREAT therapist should do WAY more than just discrete trial training.  Yes, this is a major part of the therapy, but it certainly isn't the only part.  Your therapist should also be working on social skills, daily living skills, and play skills. Of course, each program differs depending on your child's needs. If you pay attention and you have a GREAT therapist, he or she should be working to generalize skills learned as drills, away from the table. For example, if your child is learning to correctly label (either receptively or expressively) his family in pictures, your therapist should be pointing to mom and dad and either labeling them his or herself of having your child label them.  When your child is away from the table and playing, your therapist should also be away from the table and playing!

4. We Don't Work Well with Others

I've heard that ABA therapists don't get along with Speech Therapists, OTs, DAN doctors, PTs, or classroom teachers.  From a professional aspect, this shouldn't be true EVER.  It is hugely important that the major players in your child's life work cohesively as a team unit.  How silly for your therapist to not be implicating skills being worked on at school while at home!  The best thing anyone can do for your child is help them to generalize skills - the best way to do this is to incorporate the skills in a multitude of settings.  

If the people in your child's life aren't working together - make them! As a parent, don't ever feel you can't speak up!

Parents, No No NO!

After doing this for some time, I've learned that for our kids to gain anything from behavior therapy it is imperative that parents and therapists work together.  This is something that no one ever tells you - it may be implied - but it needs to be written down and handed out in pamphlets or something.  So here's my attempt to tell parents all of the things I notice from the outside looking in ... and I encourage parents to tell their therapists they see also.

You may read this and it may seem like I'm attacking parents ... just the opposite.  I'm trying to bring to light all of the things I see over and over again at multiple houses.  Things, you as a parent, may not see unless someone from the outside brings your attention to it.

1. Not Following Through.

I cannot tell you how often I see this. And, at the same time, I believe it is completely unintentional/subconscious on the end of the parents.  

If and ABA therapist, home-based therapy worker, teacher, SLP, OT,PT, or ANYONE else providing services to your child shows you or suggests a method to you that is working for them ... we are telling you because we want you to USE IT! The kids I see generalize their skills the fastest, are the kids who are expected to use those skills in multiple settings in their lives. 

The time I see this the most is dealing with negative behaviors.  If I've learned anything from the kids I work with, it's that they thrive off of consistency.  I can't tell you how often parents say to me "well, little Billy will do that for you but he would never do that for me".  That's because he knows I expect him to do it and has learned over time that I'll accept nothing less. I realize that it's easy for me to come into your house for a few hours everyday and stand my ground with your child and accept nothing less than what I know your child is capable of - I get to go at 5 o'clock. I realize that parents live in this reality 24/7.  But I cannot stress enough that if you can develop consistency with your child (and don't get me wrong, the first few weeks will be tough), your daily interactions with negative behaviors will get easier over time.  

This brings me to my next point ....

2. Coddling at Inappropriate Times

If your child has hurt themselves, by ALL MEANS, pick him up, hug him, kiss him, tell him you love him. If your child is crying because I just told him he couldn't 

eat a fourth cookie, DO NOT pick him up, hug him, kiss him, or any combination of those.   If you do, you've just taught your child that if he doesn't get his way and begins crying, mom or dad comes in and saves the day.  Your child is now going to cry more often and may begin throwing tantrums if he doesn't already. 

We know it's hard for you to listen to your child cry during therapy and I always invite parents to discreetly watch (so your child doesn't know he gained attention) if you do hear your child crying.  Remember, any attention is good attention.  And we're not trying to torture your kids, we're trying to help them work through negative behaviors. 

I had a child's father tell me once "well when he cries we redirect him".  I praised the dad for this and asked "but he's done crying when you redirect him, right?"  He replied with, "No.  When he starts crying we open up a new toy that we keep in the closet".  WHAT?!?  So I asked the dad if he thought the crying episodes were increasing in frequency and the thought for a minute and said, "Now that you mention it ..."  If your child is crying because he wants another cookie, ignore it.  When he's quiet (even for 2 seconds) say "Little Billy, how about we (insert activity here" ... that's appropriate redirecting.  But if Little Billy keeps crying, you need to ignore it.

3. Not Praising

As often as we ignore negative behaviors, we also need to praise positive behaviors.  I think sometimes we (therapists and parents) are so busy attending to negative behaviors that we don't even notice the positive ones.

If your child is prone to tantrums, praise them when they are having a particularly quiet moment or when Little Billy appropriately handles being told he can't have a fourth cookie.

Remember ANY attention is good attention and just like attending to negative behavior can increase the frequency of negative behavior  ... attending to positive behavior will increase the frequency of positive behavior.

4. Not Pushing your Child

Education courses in college taught me over and over again that the teachers who expected the most of their students, resulted with higher performing students.

Sometimes we become complacent with our kids and accept what we've always been accepting ... keep pushing your kids (obviously to the point you know they can handle).  Expect more from your kids!  They can do it ... but they won't if there's no one believing in them and expecting them to do it!!

There's a story in Jenny McCarthy's book Louder Than Words, she describes a day when she decided she'd push her (mostly nonverbal) son to start using functional language.  He wanted her to open the door to the toy room (which she knew) and she sat in front of him for 45 mins prompting him to say something functional.  She never gave in!  (and she describes how awful this made her feel).  After some time, her son game and found her in the house and gave her his approximation of "door"!! Push your kids!

As I mentioned before, I know some parents won't like this post.  But please just think it over. We are ALL (therapists included), guilty of one or some to these at some points.  If it was a professionally accepted, I'd keep a roll of newspaper with me and swat parents on the nose whenever I saw any of these ... instead, I write a blog :)

From Singled Out to Oprah

I remember when I first saw Jenny McCarthy on Oprah ... I was so excited that a celebrity (a funny one to boot) was clanging pots and pans for autism awareness.  Often when I tell people what I do, I'm met with a reference to Rainman. With the CDC reporting that ASD affects anywhere from 1 to 100 or 150 kids in this country, you would think that people would have more familiarity with the spectrum.  But they don't.   And I've said before that I knew NOTHING before I took this position.  So when Jenny McCarthy was on tv (not hooking up single co-eds) I was elated...

Then the "cringe" moment set in.  The moment where Jenny started mentioning words like "cause" and "cure" ... two "c" words that in the autism community can come across stronger than any 4 letter words you could throw out. I remember thinking Talk more about ABA!! (knowing that her son was receiving services). However, Jenny kept referring to diets and vaccines ... and I cringed.  That is until I started taking in information on my own and thinking for myself.

I am not in ANY way, saying that I know vaccines cause autism.  Many doctors claim that kids on the spectrum have lower immune systems - and this I can believe, but I'm still not sure if I see the low level of tolerance as an effect or a cause.  What I do know, though, is that we need to open our minds.  We need to develop our own opinions about vaccines, diets, theories, etc.  I once heard a doctor say "We don't know what autism is, we only know how it presents itself" ... how true that is!

Often, people outside of the field will ask me what I think about certain controversial topics ... but I don't really believe my opinion is that pertinent, but what I do think is important is that people LEARN and develop opinions on their OWN!!  People need to stop accepting everything they read as fact and do RESEARCH!  

After I stopped cringing and opened my mind to what Jenny had to say, I found her books helpful. As a professional, I sometimes need parents to remind me how they feel and what they're thinking.  It's easy for us to come in to your home and "work" rather than help.  Jenny's books remind me not to do that.

As I've said, I'm not sure if I agree/disagree with Jenny but I do think her books are helpful for both parents and professionals if only to help us understand. I look at her site often for links and news.

http://www.generationrescue.org/

My Job as a Behavior Therapist

Behavior Therapist is just one of the names for an individual who provides Applied Behavior Analysis (ABA) for kids with ASD (Autism Spectrum Disorders).  The facility I work out of (a psych hospital in New England) refers to us as behavior therapists - but I've heard behavior specialists, ABA therapists, behavior analysts, and milieu therapists. 

It's fair to say that I "fell" into my job.  I started college knowing I wanted to be a psychology major but thinking that I wanted to counsel adults.  A friend told me about a job in a behavior program for college students and I figured it would help me "get into the field".  (which seems to be everyone's goal ... )  I took the job having never met a child with ASD (as many of college students do) and will admit that I learned what I know now from both parents and the kids what I worked with. 

As I said, I provide Applied Behavior Analysis which is a highly supported form of treatment for kids on the spectrum.  "Analysis" refers to the data we take and use a means of measurement for program coordination - should we change something? add something? stop doing something? ABA is backed by statistics, evidence in journals, and much of the scientific community - so I feel secure doing what I'm doing.  This certainly isn't to say that I don't support any other type of treatment - in fact, we do implement other methods (ie, PECS, food therapy, horn therapy, playgroups ...) as part of our everyday work. 

For most kids, we see them 20-30 hours per week in their home - although, not all ABA programs are home-based.  Most studies I've read support at least 20 hours per week for substantial changes to be observed. 

All in all, we work with kids on academic skills (especially if they are in typical and/or integrated classrooms), daily living skills, social skills, negative target behaviors (self-injury, tantrums, socially inappropriate responses), and anything else the parent/guardian may request. 

As I said, I "fell" into the job ...  not planning on enjoying it.  I'm typically not a kid person - I always say "The person at the wedding dancing with kids? ... I'm physically as far away from that person as you can get ".  But I love my job because I find myself relating with these kids and understanding them - something beyond sympathizing with them.  While many of these kids suffer with being socially awkward, many of them have taught me how to relate better with people in my own life.  

I plan on using this blog as a way to discuss how the kids I've worked with help me, teach me things, and ways we've worked with them ... 

Blog Birth

I've wanted to blog for months now.  I've been pouring over blog topics for at least 6 months.  What do I KNOW?  ...

I'm 25 ... I know that.  I live with my high school boyfriend and am still not engaged ... I know that.  I'm a behavior therapist working with kids on the spectrum and love it ... I know that.  I cling to my friends, family, and wit everyday.  My life is relatively routine and predictable and I love it.