Kicking Myself

While we are enjoying the results and benefits of the last three weeks of Reiss receiving ABA (Applied Behavior Analysis) therapy, at the same time, I am kicking myself every day for having not fought more intensely for him to receive such therapy since learning about it more than a year ago.

When I first discovered ABA therapy, I did what I now look back on and think of as a very casual, half-hearted effort to seek ABA therapy as part of our treatment plan for Reiss' autism. After coming up with basically no resources for ABA in our area, I gave up. A few months later, once again, something apparently sparked my interest in seeking out ABA services for Reiss but the only results I came up with at that time were Lovaas and ABA centers that are a one-hour one-way trip from our home.

I didn't want the hassle of being responsible for submitting our own insurance claims that came with Lovaas services and driving a one-hour drive to a center and sitting for four to eight hours while Reiss received therapy was simply out of the question. Laziness has nothing to do with my reluctance to file our own insurance claims. No, my hesitancy stems more from past experiences with insurance companies and how they frequently try to pass the financial responsibility on to the consumer rather than own up to their entire purpose for providing insurance - paying the claims.

Making a one-hour drive to a center was not even something I would have considered doing. It's not that I would not do just about anything to improve Reiss's autism symptoms, but rather, many factors combined to make considering such a trek on a daily basis totally unfeasible. First, I also have Milla to think about. Making such a trek daily when she was barely a year old would have been like packing up our lives every single day so that we could go and sit all day in the parents' area of the center waiting for Reiss to come out. How would that even be fair to a one-year-old? And that's not even considering the factor of inconvenience. Second, Indiana is not the greatest place to be during the winter months. It's not unusual for what is usually a five- or ten-minute drive during warmer months to transform into an hour-long expedition out into the tundra during the winter months. So imagine what an hour-long drive under normal driving conditions translates to in blizzard-like conditions. Not fun. Not to mention, stressful, and somewhat dangerous.

During all this, there was also the question of "How in the world are we going to pay for this?" When your child receives an autism diagnosis, no one hands you a nice little manual on how to proceed after you leave the doctor's office. Most of this stuff you learn by trial and error, talking to other parents of autistic children that you meet along this journey, and by spending countless hours doing your own homework - and God knows that's necessary since no doctor out there is losing sleep over my child or spending his time advocating for him.

Anyway, so it's no surprise that I learned about ABA and then went for months wondering how all the families in these success stories I was reading about could afford ABA for their child(ren). No one ever bothered to mention anything to me about autism mandates or the fact that - regardless of my loathing Indiana winters - my family lives in quite possibly one of the best states in the United States when it comes to having a child with autism and the mandate that entitles my child to insurance coverage for autism treatments.

Depending on the source one consults, a full-time ABA program for a child can cost upwards to $100,000 per year. Yes, that's per year - approximately two times the total median individual (as opposed to a family) income for a resident of the United States and approximately three times the annual cap of $36,000 that many states provide for in their own autism mandates. Luckily, as I later found out, Indiana is not only lucky enough to have an autism mandate, but we also currently do not have any dollar amount caps on the benefits a child can receive annually. At $100K per year (and that's quite a lot more than the average I am finding), or even $36,000 per year for autism treatments alone, it begs the question of why the insurance companies themselves are not calling on politicians to demand funding for further research into autism and its causes....but that's a whole 'nother rant.

It wasn't until early this year when I declared myself to be on a renewed mission of seeking out the best possible routes of treatment for Reiss that I really began paying attention to what the autism mandate meant for us. When I researched it further and learned that basically the mandate states our insurance plan cannot deny ABA services to Reiss, it was like we had won a small victory that I had never really fought very hard to achieve. It was a victory, nonetheless, and when the former director of one of the centers I had previously contacted gave me a call to tell me she and her husband were opening a center on our side of town, I was ecstatic. Little did she know that in the following days the introductions she made possible between myself and another former employee of the same center where she was employed would result in our family getting started with ABA by means of an in-home program, much sooner than her own center was opened.

Do I feel guilty for facilitating Reiss's in-home ABA program with a different individual than the person who was trying to get us onboard as clients in their own facility? No, not really because we may still end up sending Reiss to the center once it opens so that he can continue having social interactions on a regular basis.

Long story long, that is how we arrived where we are today. Reiss is doing an in-home ABA program for around 22 hours per week and we are in Week 4. After school is out for the summer, Reiss will bump up to forty hours per week. If you are not familiar with ABA, this probably sounds like a grueling schedule to keep, especially for a child who isn't even five years old. However, ABA therapy is very play-oriented in its teaching techniques. Reiss generally runs three to five "programs" and then gets a free period in which he can choose the activity he wishes to do for the duration of his break until the next set of programs.

The results we have seen so far are amazing.

We are experiencing many less tantrums.

Now, unlike before ABA, Reiss sometimes gets water or something on his shirt and there is no meltdown. Sometimes, in these instances, my husband and I find ourselves looking at one another while both of us are thinking, "Okay, where is the tantrum? Is it coming and is just delayed?" But it never comes and we are shocked and amazed.

Car rides are actually enjoyable - something I have never - post children -been able to say prior to now. Reiss and Milla sit. And they are often quiet. No screaming. No stressing me out to a point where a three minute car ride is like enduring a non-medicated root canal. And at the risk of jinxing myself, I will even go so far to say they often watch DVD's while in the car, as in, they actually pay attention to them.

And discipline....oh, where do I begin? Prior to ABA, nothing and I really mean nothing has ever proven effective with Reiss for any given amount of time. Timeouts were the worst. Sending him to his room was like a reward. Reward systems meant nothing to him. Positive reinforcement was like a permission slip to follow his good deeds with an undesirable behavior. If parents of typical children thinks it's difficult trying to discipline a child, they have no clue what it's like for many parents of autistic children. These children simply think and process things differently - and that's not my opinion, it's a fact.

Reiss is writing and drawing and - I don't even know how to word this to give it the magnitude it deserves - recognizing written words. I would venture to say he is reading. Reading by rote memory recognition of words used repeatedly in visuals with his ABA programs, but reading, all the same.

The most amazing thing though, is that Reiss is actually initiating conversations - no, wait, I mean meaningful conversations with people. He is asking people their names, their middle names, last names, birth dates. Before ABA, Reiss barely noticed the existence of other people around him, much less engage in conversational speech with them.

With ABA, I feel like we have our sanity back. Literally.

Finally arriving where we have has been quite a lesson in researching our options and digging for that information that no one is going to spoon-feed us. The whole process has left me wondering why we didn't get ABA for Reiss much sooner - at any cost or inconvenience or whatever. But I know the answer to that - I just didn't put up enough of a fight.

And while the ABA is costing us an arm and a leg, even with insurance coverage, that sanity isn't something one can put a pricetag on.

I can just see the commercial for ABA....

Autism: Your child's ability to develop "normally" out the window.
Effects autism has on a family: Feelings of isolation and lack of others who understand and can relate.
Treatments for autism: More money than any average person makes in a year.
ABA: Too darn much.
Getting one's sanity back after ABA: Priceless.