ABA Therapy

DISCLAIMER

ABA Therapy is just *one* therapy option, or approach, to helping your child with developmental delays due to autism spectrum disorders.  There are so many different approaches out there, and they all have their place. . . because there are so many unique individuals, with unique delays due to their particular place on the spectrum.  Our experience with ABA is simply one, singular, unique experience.  I would never, ever, think that this is the ‘one and only true way.’  It works for some, it doesn’t for others.  It’s available to some kids in some school districts, and others due to their health insurance policy.  It is available to some people who have the means necessary, and others who have the drive to scrape the money together and live paycheck-to-paycheck in order to pay for it.

This is simply my story.

COST

Our monthly average cost for 35 hours weekly  of ABA Therapy was about $2,000.  We paid $1,600 out-of-pocket, and the United Healthcare Children’s Foundation (UHCCF) paid the remaining $400 from a grant we received.

I started a crappy call-center job the month Hamhock was diagnosed.  I started working this job (30 hours at night until midnight) to earn the bulk of the cost for our son – about $1,200 a month.  We squeezed out $400 a month from our family budget from Foo’s job* (luckily we didn’t have a mortgage, we rented for $800/month, we had a $160 car payment, and basically lived hand-to-mouth/paycheck-to-paycheck).  Luckily we qualified for the extra $400 a month from UHCCF.  Whew.

YOUR LIFE MAY BE HELL IF YOU DON’T HAVE THE MONEY, BUT IT MIGHT BE WORTH IT

I have to state up front here, that I hope my blog doesn’t give people the errant idea that my husband and I were rolling in the lap of financial solvency, and that is why we were *able* to pursue a private ABA therapy program.

We had no money.  Honestly and literally.  We were renting an old, stinky 1950’s house for $800 a month.  We had a crappy family Ford Focus that kept breaking down, for which we were paying $160 a month.  (Our 8 year old Jeep was thankfully paid for).  Foo worked from 9-5 (*he was finally making about $50K as an attorney in attorney-saturated Utah.  It took him two years after law school to secure his first real law job, earning $37K.  We have $75K in law school debt), and I would leave the house at 5:30 pm, once he got home, to go to work from 6 – midnight.  We literally lived hand-to-mouth/paycheck-to-paycheck for two years to provide our son this ABA therapy.  We had no savings.  We were not contributing to a 401K.  We took no vacations.  We were struggling to pay off our $7K hospital/doctor bill from Superboy’s c-section the year before (because of crappy health insurance).

So, after I would manage my son’s therapy alone all day (hiring tutors, keeping them trained with bi-weekly meetings, monitoring their progress, etc), while also breastfeeding and taking care of my one-year old (proud to say I breastfed him until he was two – yay for breastfeeding moms!), doing all the typical “housewifey” things – laundry, cleaning, grocery shopping, cooking, ironing, paying bills, etc, then I got the *lovely* pleasure to work at a crappy call center job until midnight, 5 nights a week.

I developed insomnia.  I lost my sex drive.  We didn’t go on any vacations.  I felt like an 80 year old woman with no energy (I was 36-38 from 2006-2008).  I developed serious dark circles and bags under my eyes.  As of March 2013, I am still recovering from each of those things, as well as obviously financially trying to catch up from so many missed years of financial progress.

It sucked.

That said, the progress I saw in our son was invaluable.  I would not trade those two crappy years for anything, because I truly feel it gave him what he needed.

Because of my experience, I don’t think that ABA therapy is just for financially solvent people.  I believe that if there is a will, there is a way.  Maybe I might be a bit unusual in my drive to figure out and fix problems, and my willingness to sacrifice so much of my personal happiness for a short time.  But, it was the only thing that I found myself needing/driven to do.

I sincerely pray that health insurance in all 50 states will cover ABA therapy (if that is the path that the parents choose), so that they also don’t have to go through two years of hell like we did, just to give their child a fighting chance.

Thankfully, in mid-2008, Foo got a much better job with a better firm and that coincided with finishing up Hamhock’s ABA therapy, so we were finally able to start living a “normal” middle-class life.  We bought our first home at the end of 2008 (after 11 years of marriage); a little 1983 2,000 sf bungalow with a one-car garage.  We bought our first minivan in August 2011 (after 14 years of marriage) – goodbye crappy 2001 Ford Focus!!!  We took our first official family vacation to the Grand Canyon in November 2011, when Hamhock was 8 and Superboy was 6.

So, please. . .I hope there are no illusions that only financially solvent or well-off people can run a successful, private ABA Therapy program.  Sure, having money would help and like anything in life, money makes your life easier, but if this is what you feel you are driven to do for your child, then there are ways to figure out how to earn the money that is needed.

(I have to say the worst of it for me was starting my job in June 2006, and having to work and wait and prepare to start the ABA Therapy almost 4 months later – at the end of September 2006.  I was the SAHM mom to Hamhock, age 2 1/2, and Superboy, age 1.  Then I would work 30 hours at night till midnight.  I cried every single day.  Multiple times.  I cried and screamed on the way to work.  I cried and screamed on the way home from work.  I was grieving Hamhock’s diagnosis.  I didn’t have the skills, knowledge or experience to know how to help him through his tantrums and obsessions each day.  He couldn’t talk to me.  I didn’t know what he wanted.  He ran the show, and I just followed him around trying to make it through each day.  He didn’t even call me Mom or Mommy.  He couldn’t say the words.  All he said was:  “Goo!”  or “Ga!” and maybe a “ball” or “da” thrown in once in a while.  All I wanted was a relationship with my child.  I existed only for him to use to get what he wanted.  I wanted the therapy to start NOW, but it took time to hire tutors, earn the money to pay for Scott’s training, earn the money to set up the ABA Therapy room, earn the money to buy the flashcards, rewards, and therapy materials, etc.  LIFE SUCKED IN SO MANY WAYS.)

ABA CONSULTANT

We hired an Autism/ABA consultant who trains our therapists for Hamhock’s program: Pryor Consulting. Scott has been involved with healing kids with autism since 1993. He started out while he was in college as a therapist himself, and definitely has a real talent for working with kids on the spectrum. I would be glad to have him as a therapist myself. Scott charges an initial fee of $1000, which covers his 2-day parent/tutor training. After that, he charges $125 an hour for staff meetings, which last usually 2 1/2 hours. We held staff meetings every 2 weeks at first, and now every 3-4 weeks.

I would definitely recommend Scott as an ABA Consultant in Utah.  Although he is not super attentive after your first month or so (he still has one of my video tapes, which he ‘forgot’ to give me feedback that I requested), he definitely addresses any concerns you have in your regular staff meetings, which occur on a regular basis.  I found his rates to be fair and competitive in the industry.  There is another center that provides the same ABA consulting services here in Utah:  Redwood Learning Center.  I had initially called them and received an information packet from them; and at that time they were comparatively priced as Scott, but then we decided to use Scott’s services.  You can also check out the Utah Parent Center website for other providers in Utah.  I had called a few others; but they seemed to provide a mish-mash of services and not just strict ABA like Pryor Consulting and Redwood Learning Center.

TUTORS/THERAPISTS

We’ve hired 9 therapists total, and have 5 currently working (April 2008). They each work anywhere from 6 – 12 hours a week. We started out paying $8.00/hour, with 50 cent raises every 6 months. Now I hire starting at $9.00/hour. We pay “holiday pay” for Thanksgiving, Christmas and New Year’s. We give $25 gift cards for birthdays and Christmas gifts. We pay for all supplies needed.

Therapists are probably the hardest struggle to keep your program running.  In a perfect world you’d like the same therapists for the duration of your program.  But in a normal world, their needs change, they quit, get other jobs, don’t like this job like they’d thought they might, need more money, etc. etc. etc.

TRAINING

The first morning of our training with Scott went very smoothly. He mostly gave me, Foo and our therapists the “big picture” overview of ABA Therapy (designed and tested by Dr. O. Ivar Lovaas at UCLA: Lovaas Institute).

On that first day I was not prepared for what Scott did after lunch. He asked Hamhock to “come here” to the little wooden chair in front of his little wooden chair. He rewarded him with tickling and verbal praise for coming to the chair, but as soon as Hamhock was ready to run away, Scott didn’t let him. Of course this made Hamhock mad. So Isaac tried again, and Scott just held his arms in front of Hamhock, not holding him down, just using his arms as a barrier from leaving. Well Hamhock doesn’t like anyone imposing any sort of a rule on him, so of course a full-blown tantrum started, and didn’t stop for 45 minutes!

Holy crap! I felt like it was almost child abuse to keep this little 2 year old (almost 3) in a little wooden chair. “Let him run around!” my heart cried, “Let him do what he wants, don’t “force” him to sit in that little chair!” But my head said, “patience, Scott knows what he’s doing, trust his experience. And besides, he HAS been running around for almost 3 years – the running around has not helped him learn! So shut up and learn from the expert.”

I kept watching Scott’s face; it was completely calm and patient. It confirmed to me that he knew what he was doing; I needed to trust his experience. As soon as the moment occurred when Hamhock calmed himself down, and I’m mean literally THE MOMENT, Scott gave a huge verbal praise reward to him and said “go play!” He ran over to me and cried a little more. The key was to reward the behavior we wanted – the moment where Isaac CALMED HIMSELF DOWN.

He had been completely unable to do that up until this moment.

That is the basic premise behind ABA – rewarding the behavior we want, and ignoring the behaviors we don’t.

PROGRESS

This exercise alone decreased Hamhock’s head-banging tantrums by probably 75-90%. I couldn’t believe it! After at least 9 months of watching these horrible, head-banging tantrums with no skills to help him calm himself down, I felt like I had a miracle.

That September, Hamhock started our with only 5 true words. He mastered the word “more” on 2/14/07, and the word “baby” on 3/3/07. Learning the word “baby” was a break-through. After he mastered that one word, I heard him say “bye-bye” and “bee” for the first time. His verbal skills just flowed from there. By April 2007 he was learning 2 word sentences.

One night when putting him to bed I was just about to close the door, when I heard his little voice choke out the words: “Hold . . . my . . .hand.” It made me realize how HARD it has been for him to form the words and communicate his needs and wants. I think of it kind of like learning German when I was a junior in college, studying abroad in Heidelberg Germany. You can kind of understand what people are saying to you, but it takes a lot of effort to translate in your head what you want to come out of your mouth. It took me probably one and a half years before I didn’t have to translate in my head, and words just flowed out of my mouth. Here was my little 3 year old boy, trying desperately to learn a “foreign” language. Why couldn’t everyone else just understand goo talk?

As of April 2008, we’ve been doing 30-40 hours of ABA for almost 19 months. He generally has an ABA session for 3 hours in the morning, then 3 hours in the afternoon for 6 days a week. He now speaks in full 7, 8, 9 word sentences and expresses himself very spontaneously. He’s a hard working kid!

 

Hamhock and therapist John:

Hamhock and therapist Molly:

Hamhock and therapist Juli:

Hamhock and therapist Claire:

COST

Our program costs us about $2,000 per month.  We pay $1,600 per month ourselves, and a grant from the UnitedHealthcare Children’s Foundation pays the remaining $400. We live in Utah, where no insurance mandated laws exist and our health insurance doesn’t cover anything.  Getting your school district to cover ABA Therapy would require that you first start with an IEP with your school district, and then fight like the dickens until you wear your school district down to eventually come up with some sort of a compromise to cover your ABA program.

The biggest challenges I’ve discovered in running a private ABA program are keeping good therapists. It is also a struggle when therapists need time off (which is normal, and they deserve to have), but then I’m left with nothing to do with both boys, and the soul-crushing guilt that I’m wasting precious time for my child’s recovery. Holidays are the worst to manage with a minimal ABA schedule, and too much bad food and stimulation!

You can see all of our supplies on the shelves above.  The string is a “spider-web” Hamhock made out of thread, his at-that-time current obsession.

Our decision to pursue ABA Therapy, instead of RDI, Floortime, TEACHH, ST/OT with the school district, or other therapy programs was based upon numbers. When we read about Dr. Lovaas’s study which recovered 47% of the children with autism (and by recovered it means that they became ‘indistinguishable’ from their peers), we knew we had to try. We also liked that he recommended intensive therapy, meaning A LOT (30-40 hours per week). I constantly had a nagging feeling that Hamhock needed a lot of focused therapy, and ABA answered that nagging feeling. The other therapies didn’t have any numbers to show for recovery rates.

I also discovered that Utah has very limited options/services for children with Autism. There are many supports for children with special needs, but not much designed specifically for children with Autism.

The breakdown for us was this:

1. Continue with the Salt Lake City school district in the special needs preschool, with an IEP. The preschool only met 2 mornings a week, and was not autism-specific. It served all disabilities. Of course, we would work with Hamhock’s IEP team to get specific ST/OT type services needed, and maybe ABA eventually. I spoke with a law firm that specializes in disability law, and they said the only way to get the school district to pay for our ABA was to start out with school services, and continue to work and prove and show that ABA is the most appropriate program that would address Hamhock’s specific educational needs. You would have to fight like the dickens until you wear your school district down to pay for your ABA program.  Our main factor in determining not to fight the good fight with the school district was that we didn’t want to waste precious time fighting, when Hamhock needed help now. We didn’t want to waste even 6 months; we felt that time was ticking away.
2. Salt Lake City has an autism-specific school that serves kids on the spectrum for 10 months/year, 4 days/week: the Carmen B. Pingree School for Children with Autism. Hamhock was on the wait list for 16 months for the state-funded slots. We could have started him immediately if we paid out-of-pocket $2500/month, or possibly $1800/month if we qualified for the The Carson Smith scholarship. We realized that we would spend the same amount for our own ABA-intensive program and have all the control. When Hamhock’s spot came up in October 2007, and I observed the classes at the school, I knew we had made the right decision to do a private program. They do a modified version of ABA, and it’s definitely not 6 hours/day. I wasn’t impressed that the ABA they did was 1:2 (sometimes even 1:3). That’s alot of down-time for the kid waiting to be interacted with.  Also, the therapists there looked very bored and didn’t seem very creative in their reinforcing.
3. I spoke with Tara Dean Moffat, the only certified RDI consultant in Utah in 2006, and was not overly impressed with her (I later learned that she may have been going through a divorce at the time).  Also, after reading Dr. Gutstein’s book I realized that RDI would benefit any ASD child at any age, and ABA really is most effective when implemented early.
4. The Children’s Center provides some social skills classes for children with autism, but usually not until age 5.
5. Floortime sounded like a good option to start before you do ABA if you suspect ASD before 18 months. The Children’s Center is having the director of a Floortime Play Project speak sometime in May.