Monday, October 6, 2014

Why I'm a Fan of Our ABA Program and Why It's Right for Us

This morning someone tried to point me in the direction of a link that is one of the many that believes that ABA therapy is always damaging and dangerous and that I'm doing my daughter a disservice by having her in it five days a week.

I know that there are a lot of pieces out there that say the same thing.  And I'm not defending ABA therapy in it's entirety because I have found that treatments and therapies should be evaluated for their worth on a case by case basis... and the only experience that I have is the experience of our family, limited though it is.

When Mae was first diagnosed, I plunged into the world of all things Autism head first.  I read everything I could get my hands on.  Soon after Mae started ABA I was pointed in the direction of the horror stories of the Lovaas model of ABA and I'll admit, I wouldn't defend what was done in the name of "helping" many on the spectrum if I could.

At the same time, I think it's important to recognize that the Lovaas model is not the only model that exists these days. Mae is in ABA which is a mix of ABA and floor time.  I've also been trained in a program that a PhD at the local university developed (and where Mae is currently going to weekly sessions to help train grad students) that is another type of ABA that involves imitation and following the child's lead and that when I first began attempting the techniques with Mae caused her entire face to light up in delight because I was trying to communicate with her in a way that made sense to her, for probably the first time in her life.

So, for those starting out on this same journey, or those who are just curious why I think we're doing the right thing for our daughter, I'll offer this simple explanation.

I feel that we're doing the right thing for our girl because she waits by the door for her therapists to arrive.  On days when therapy is cancelled because we have a morning doctor's appointment or something else pressing that we need to do, she'll go into the middle of the room and stand there and look around and then take my hand and lead me to the table or on the floor, depending on her mood and wait to start her favorite part of the day.  And she's seldom satisfied with the Mommy version of her sessions.

It's perfectly clear that it is her favorite part of the day.  She clearly loves her ABA therapists, the interns and the person who writes her program who comes to help plan her individualized plan every week.  I get to see it because I'm in the room for her sessions.

Right now she's sitting in the playroom about ten feet away from me with one of therapists, hard at work playing.

I've heard people say that the therapy I have her in is similar to "training a dog" but in Mae's case I can only agree with that if you also think that teaching Sadie to read is the equivalent of "training a dog" (which I guess is to say that in our case, I don't agree with that statement in the least).  

Mae works with letters and numbers, sings songs like "twinkle, twinkle, little star," engages in play, does sensory activities and she goes on walks (or roller skates) where she learns things like to look both ways before she crosses the street and not to run into traffic.  And other than the fact that she eagerly anticipates her sessions and smiles and giggles through them, I can tell that she's proud of what she's learning. She'll hold up her hands to tell me she's four or show us the letter M and say "mermaid!  mermaid!" in an excited voice (she's also a huge fan of telling us that I is for ice cream).  We've seen her take the skills she's learning and use them in her everyday life and she's proud of herself.  We're giving her the tools that she needs to be more independent, but more than that, she's using these tools to express herself, and she's doing it (from her proud mom's point of view) quite brilliantly.

So no, I can't promise you that ABA is a cure all or that every child thrives in every program or even that our program is right for every child.  But I can say that I'm confident that it's right for Mae and that when I sat in a meeting last week with her case worker, occupational therapist, program planner, one of her ABA therapists and an intern and they asked me what I thought we should change in the upcoming year, the only answer that came to mind was "Absolutely nothing.  I want us to keep on exactly with the direction we're heading in because it's working out so much better than anything I could have imagined a year ago."

I guess that means that the advice I would give a parent who's starting this journey and reading about the highs and lows of various therapies is to be as present as you can be, to know your child and to see how your child, as an individual who's different from everyone else in the world responds to those therapies for themselves.  Then take a deep breath and take it one day at a time, doing the best you can to love and support your child as the uniquely wonderful person that they are.

6 comments:

  1. At the time (14 years ago) that my dd was diagnosed; ABA was not widely available plus it was really expensive and the gold standard was 40 hours a week or no results. So we only pursued floor time, speech therapy and auditory processing therapy. About 10 year later, I took some behaviour science courses and now I believe several things about ABA.
    1. It does have usefulness.
    2. It doesn't have to be 40 hours a week to be effective and in fact studies showed that there was a correlation between IQ and success so that you could have a child with a fairly high IQ who would do just fine on 20 hours a week while a child with a low IQ (or low functioning) could have 40 hours a week for years and not really improve much. This comparison sounds extreme and there's lots of kids in the middle but the point is that ABA is not black and white.
    3. If I had a do over; I'd do 10-20 hours a week of ABA (even if I had to do it myself or find someone to do it with me) (without all the charts and discreet trial stuff) and mix it with floor time to get certain things like compliance with sitting in circle or at a desk in order to help dd function in a classroom setting or to improve conversation and turn taking.
    So that's my $10 worth of thoughts.

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  2. Yes, Yes, YES! You are so spot on.

    Models of therapy and even the therapists themselves vary greatly and the parents are the ones who need to evaluate how it is going for the child and decide what to do next.

    Mom instinct and awareness is often underestimated, but I think in most every case the gut of the mom is going to know when something is good or when it is off.

    That yours is joyful in the therapy tells you she is gaining something from it that she needs and she is thriving. Seems to me you are making the right decisions for her.

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  3. I love both of your comments! And I definitely agree that lesser hours of ABA can be hugely helpful. Mae has three hours a morning five days a week and I really feel like that's an optimal amount for her. More than that I think would be overwhelming at her age. Three hours in the morning is just perfect for you attention span!

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  4. See, this is why I'm glad you, and not I, blog about this sort of thing. I have found as I get older that people making rude suggestions or comments to or about me or mine are far, far more likely to be met with a snarky, rude, or simply unprintable response that a courteous or well-thought-out one. I just don't have the time or the patience anymore, and I don't feel inclined to explain myself to all and sundry who think they're owed an explanation when they aren't.

    I'm glad that you're nicer than I am. ;)

    What IS it about our society that has taught so many people to think that interfering, unasked, in other peoples' lives is acceptable behavior?

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  5. Keeping with the mom knows best theme. I once pulled my dd out of a free 10 week block of group speech therapy halfway done as she wasn't happy with that particular block. The SLP's were like "she's unhappy because we're making her work hard". Um yeah; maybe not! No regrets and she went on to other SLP experiences that she liked and was happy. She's currently working with an awesome SLP on fine tuning social situation skills and really liking it. (she takes public transit alone(ok she's done that for 8 years) and is working hard this year on this)

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  6. Not knowing what ABA therapy was, I had to look it up. As I read about it I wondered, What if a child like Mae likes the therapy because she learns what responses are desirable to adults and parents? What if a child with autism is mostly confused about why their behavior is not getting validated, but has no idea what behavior would be validated? It would seem better to help them learn which behaviors are wanted and feel more successful in their interactions, as they learn behavior most children learn without as much effort.
    It seems like it would be a blessing, not a bad thing. Most children want very much to please their parents and get affirmation, so perhaps a child with autism needs more help to learn which behaviors achieve that.
    God bless you as you help that precious little girl grow up! ~ Bonnie

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I love comments and I read every single comment that comes in (and I try to respond when the little ones aren't distracting me to the point that it's impossible!). Please show kindness to each other and our family in the comment box. After all, we're all real people on the other side of the screen!