Intensive ABA Services
The following story comes from one of the many parents who tirelessly contribute to their child's ABA programs. Names have been changed to protect the family's privacy.
Receiving a diagnosis for our son Neal in 2005 was initially a huge relief. Knowing that we had some sort of explanation for his delayed speech and "quirky" behavior actually made me optimistic and feeling ready to take on the challenge of a diagnosis of autism. This feeling lasted about three days. As I began to search the subject of autism on the Internet, I grew increasingly discouraged as I read postings and articles stating that there was a very good chance that my child would never have a "normal" life, and would never be able to live alone. It was then that a sense of urgency seized me, and I went to the nearest bookstore and bought as many books as I could on the subject. Through my research I read numerous testimonies that stated that behavior intervention carried a high success rate, if we started intensive ABA as early as possible (he was 2 years and 1 month at the time of diagnosis).
The only problem was we weren't sure exactly how to secure these "intensive ABA services," and were put through a lot of red tape with regional centers, particularly as we were in the process of moving to a different county. As the window of "early intervention" started to slip by due to processing times and the move, we started to panic as nearly six months had passed since his diagnosis. The regional center finally set us up with a provider who did a sort of behavior intervention, but it was not the type I had read about, and was only offered two hours a day. The books had said in order to reach maximum effectiveness I would need to secure between 30-40 hours a week and no one was offering me that! Meanwhile, my son was 2½, and still was not talking, preferring to spin in circles in a corner, or twist the same toy in front of his face for hours. He would not respond to his name, and did not understand simple instructions. He had no interest in being with other children, or with his family. There were dark days as we cried and prayed and tried to find him help.
In a life changing chain of events, we found a parent support organization online (LAFEAT) that had monthly meetings a couple hours from our house. I noted that at their next meeting they were going to have a speaker from the Lovaas Institute, which had popped up in the reading I had been devouring as a behavior intervention technique that had been proven to be very effective. We got a babysitter and went to the meeting. At the meeting we were welcomed by parents who had undergone the same journey that we were starting, and they helped point us in the right direction to secure more hours from the regional center, get an independent evaluation from a psychologist, and secure the assistance of a great lawyer when we needed to fight to get a "fair and appropriate education" for our son. All the support and direction was amazingly helpful, and in August 2006 we began 35 hours a week of 1:1 therapy with Lovaas, 10 months after diagnosis. Beginning with a "come here" program, which taught Neal to follow the instruction to come when asked, we journeyed through the painstaking and often slow process of teaching Neal things that other children naturally would pick up through their environment. As we began to see results, and learn to use positive reinforcement to teach necessary skills, we were thrilled at having access to these tools. My son turned out to be very motivated by praise, so we worked very hard at cheering and having a little celebration whenever he accomplished one of the things we was learning.
In those first years, Neal had such kind and friendly people choose to take him step by step through the often monotonous details of learning everything from how to indicate he wanted something, memorizing common words with a picture book, putting on a shirt ("shirt down, touch tag, flip over"), and even the extremely tedious task of toilet training, which started out by taking him into the bathroom every couple minutes. It literally took months to increase the time increments (and log all the successes and failures) from every couple minutes, to every 5 minutes, to every 10 minutes - all the way up to every hour. I can't imagine what kind of patience that took from these therapists during that six-month period. I remember during one clinic meeting, when the team was discussing what the goal was for the week: it was something like, understanding what the color yellow was. I stepped back and thought, "This is the goal for the WEEK?" And I marveled at the precision of this program, which broke information into the bite-sized pieces that kids with a different way of seeing things need to process them.
Looking back on those days I am amazed at how difficult it was for Neal initially to learn, because after months and years of working through the program with Lovaas, Neal DID start learning through his environment, and then he started learning in leaps and bounds. We moved again and were privileged enough to transfer to another Lovaas office, gaining another exemplary team leader and team. Now Neal was ready to learn more complicated things like social interaction, reducing "stimming" behavior and teaching him to learn appropriate times to satisfy those desires, and enter kindergarten with a shadow from Lovaas. The new school district couldn't argue with the progress that Neal had been making with Lovaas, and agreed to continue funding a Lovaas aide in his General Ed. classroom. As we began to reduce those hours, Neal continued on to a General Ed. 1st grade class. The kids in the class never knew the aide was there for Neal, and as I nervously arranged play dates to work on social issues, Neal became more and more adept in his social skills. Each week for the next two years, the team would meet to address issues they saw him having in school, to help him eliminate negative behaviors and ultimately become more successful the next day.
Neal has now completed the 2nd grade, and was alone in the classroom without an aide for most of the year. He is very proud that he doesn't "need the extra help of the babysitters." He has many friends and is in constant demand for play dates and sleepovers. I allow him to go to friends houses alone, and marvel at the fact that none of these parent friends even know he has a diagnosis. There are certainly many issues that we continue to trouble shoot at home, and recognize that Neal continues to learn differently and require different motivations than another kid might, but we are thrilled to be living a typical life, with a very happy kid. This kid loves to read, has organized a "band" that meets at our house weekly, organizes sleepovers, and loves to sing and act. It's easy to forget now the journey we have been on, but I always will be so eternally grateful for our tireless angels at the Lovaas Institute who have forever changed our lives and the life of a friendly, creative, happy 7-year-old named Neal.
Do you have an experience with a creative format to typical programming? Share them with us here
The names of all children in this newsletter have been changed in respect for family confidentiality.
The Big Sneeze: Pretend you are going to sneeze and really exaggerate. Start to sneeze but then stop before actually completing it. Do this a few times to build anticipation before the big sneeze! For example, "Oh no, I have to sneeze! Ah Ah Ahhh Ahhh Ahh..oh, it went away." Then, "Oh, my sneeze is coming back! Ah Ahhh Ahhh Ahhh...Oh man, it went away again!" Then, "Oh wait, it's back! Ahh Ahh Ahh AHH-CHOO!!!" Try tickling the child when you say, "CHOO!!"
Two Man Band: Let the child lie on their side across your lap, and singing their favorite song, play them like a guitar (strumming their belly)! Rock out even harder by dancing around the room with your kidtar!
Cuckoo Clock: Hold the child under their armpits, and swinging them from side to side, chant, "Tick Tock, tick tock, I'm a little cuckoo clock! Tick tock, tick tock, now I'm striking 1 o' clock," then bounce the child up in the air and say, "Cuckoo!" Add an extra "cuckoo!" and bounce for each increment of time (e.g., "cuckoo! cuckoo!" plus two bounces for 2 o' clock).
Don't Go Anywhere: Pretend like you're leaving the room and say, "I'll be right back, don't go anywhere!" Then quickly pop back into the room and exclaim, "I said don't go anywhere!" Continue in a similar manner a few more times for silly fun!
Where'd it go? Using a stuffed animal, favorite character or other toy, have the child close their eyes while you "hide" the toy in an obvious but silly location (e.g., on top of your head, coming out of your sleeve, etc.). Then ask, "Hey, where'd it go?" and let the child find the toy. The child can also take turns hiding the toy!