To be honest we went to their house expecting to meet another pretentious person looking to butt into our marriage and only wanting our money and I am happy to say that it couldn't have been further from our previous experiences. We instantly clicked with their Behavioral Consultant, JP. He was in our age bracket, to the point and all about the ABA. Not once did he mention marriage or money.
He gave us all sorts of data about the methods they use and I think we both felt relief for the first time in months. As it turned out he works for the Lovaas Center out of Vegas which is owned and started by Eric Lovaas. The Lovaas method was developed by Eric's father Ivar Lovaas at UCLA back in the good old 70's and happens to be the main model of ABA that most other methods are actually based off of.
It also turned out that JP's sister is Autistic and that is how he got into doing ABA when he was only 16. When his sister was diagnosed his mother was told to prepare to love her and put her into an institution. (There were very little resources available 16 years ago, heck there were very little resources available 6 years ago!) Needless to say JP and his mother fought to get her help and that girl that was supposed to be institutionalized spoke at our senate hearings last year to help get new insurance laws passed, she is learning to drive and well on her way to living a pretty productive life.
You have no idea how much it meant to us to finally meet someone working in the world of Autism that had first hand experience with it. Half the people we deal with don't even have children let alone ones with special needs. Here we had the son of the creator of ABA as well as a Behaviorist who actually has Autism in his own family, tell me how could we possibly go wrong?
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| JP Behaviorist extraordinaire and lil old me! |
I won't lie working with our son and doing ABA therapy is HARD HARD work. I understand how it's gotten a bad rep among older doctors. Back in the day when it was first started they still believed in shock therapy so a lot of our parents generation still associate rudimentary treatments like that with ABA. We've also learned that there is a right and a wrong way to do ABA. If done correctly all prompting is faded out and the child basically begins to prompt themselves. If done incorrectly you can create a prompt dependant child creating that sort of robot effect that the state pediatrician warned us about. In that same meeting she also likened it to Dog Training which couldn't be further from the truth.
I don't know a parent on the planet who hasn't bribed their child to behave at one point or another whether it's with ice cream or a trip to the park etc. Children at school work for stickers and recess. Don't we as adults work for money to buy toys so that we can in effect, go out and play? In ABA therapy children work for incentives, one day it may be a favorite toy, the next a favorite TV show, on bad days maybe it's a treat. Our son works for little plastic teddy bears, and he understands that when he gets all his bears he gets to go play for a bit. In no way is my child trained like a dog.
ABA is a positive experience he is not scolded, he is not forcibly restrained. Bad behaviors are extinguished by not emphasizing them. Instead emphasis is placed on really praising good behaviors. I was a little skeptical at first but I'll be danged if it doesn't work like a charm. We're learning that sometimes 2 + 2 really does = 4! Sometimes things really are as simple as they seem. (Sort of like when the Super Nanny makes parents not react to the child that keeps getting out of bed and makes them quietly and repeatedly pick them up and take them back to their room and eventually guess what? The child goes to sleep in their own bed.)
I also understand why a lot of parents give up on ABA so quickly; the first couple weeks trying to work with our son actually brought out more behaviors and there were days where neither my husband or I could keep from crying. My arms were a mass of solid bruises from where my son would repeatedly bite me. We had to put double sided Velcro on everything because the second he would come to the table he would throw everything and laugh. It could take 30 sometimes 40 minutes to get him to do one simple task. Since we couldn't afford more than one tutor I didn't have a choice, I had to make up the remainder of the therapy hours required each week. Somehow I found an inner strength to sit through it and not react and after a couple weeks when he realized that his behavior wasn't getting him any attention and more importantly it wasn't getting him out of doing the therapy he just simply stopped.
I know it sounds so awful but we were only trying to get the kid to put a block in a bucket or match a circle to another circle and yet something that seems that simple to us is so scary and hard and overwhelming for an autistic child. They often have a fear of the unknown and they tend to have perfection issues, not a great combo for learning new things. Their defenses kick in and they go into survival mode. They can't talk to you and tell you why they're upset and the only skills they have to express themselves and to cope is to act out.
They can't tell you that the light flickering above you is bothering them or that the order in which you gave them breakfast foods is wrong or that the door you walked through to go into the store is not the door you normally go through and that up sets them. Autistic children have insane memories and they very much like routine and structure and usually when they flip out it's not because they are unruly or undisciplined children. It's usually because something in their routine or environment changed.
Example: Just a couple of days ago my son suddenly refused to drink his milk. I tried repeatedly all throughout the day with zero success. Milk is his favorite thing and happens to be the main source of protein for him so I was really starting to panic. I had to take a step back and think, "what's different in his environment or routine?' and I realized that these were new sippy cups. Even though they were the same brand as the ones he was used to drinking out of the lids were a different color. I exchanged the evil yellow lid with one of his old blue ones and he sucked down that milk like it was going out of style! Every day of our life is filled with funny little challenges just like that one. Something that simple can lead to an entire day of tantrums and behaviors all because he's so frustrated at not being able to tell me what's wrong.
Once you truly understand that these kids are just so remarkably sensitive to the littlest of things you'll never shoot another nasty look or comment to an Autistic kid/family when you're out in public ever again. I have seen first hand that listening is actually a skill and it is not something you can make someone do. At the moment I sound like the Charlie Brown teacher to my child, "Wah wah wah ZANDER wah wah DOWN wah wah TROUBLE" I cannot physically make him tune into the sound of my voice and hear every word.
Trust me when my kid is thrashing around trying to jump out of the cart at the grocery store and refusing to let the checker ring up his box of kleenex or whatever crazy item he's formed an unnatural attachment to... I WOULD LOVE TO DISCIPLINE MY CHILD...how do you discipline someone who is literally not listening to your voice? All I can do is get through the damn checkout process as fast as the "I'm so miserable with my life" no personality checker will let me and get him home. Eventually I will be able to threaten the little bugger, lol, but we're not at that level of communication yet.
I have to be completely honest... my husband and I used to be those people. I look back now and wonder how many people I have judged and made comments under my breath like (Could you discipline your child lady?)or (that's great parenting!); I have to wonder how many of them actually had kids on the Autism Spectrum and I feel like the biggest a-hole about it now.
I also need to say that I am in no way excusing bad behavior just because I can't traditionally discipline my child at this moment in time. Autism or no Autism it is still our responsibility as parents to teach our child manners whether they are verbal or not, behaviors can be learned and unlearned and in our house we work on saying please and thank you every day.
It's been a year since we started therapy and our son has come so far! In the same amount of time that it took the state to teach Zander how to point and make the sign for "more" ABA has gotten him to stop head butting, his tantrums are much shorter and mostly age appropriate, he rarely walks on his tip toes, his eye contact is better, he smiles all the time, he now knows all his shapes, colors, animals, he knows the difference between big & little and we're working on all sorts of other opposites, he cuddles and hugs and gives High-5 and kisses, he knows and makes animal sounds, he's working on prepositions, he can put things into categories, he went from being non-verbal to having over 100 words of objects that he can and does label on his own without any prompting. He's learning to say I Want... and Help and Please and Thank You, learning how to take turns and pretend play with toys, he's slowly closing the gaps in his brain and is almost age appropriate on everything but communication and that is even starting to be within our grasp now too. He goes to gym class once a week and loves being around the other kids and is now able to sit in circle time, he's able to play on park equipment where he used to just walk around the perimeter, he swings and slides now where he used to be petrified and scream. He understands the word NO and playfully tests me every day on it.
That is not to say that we don't have a long long way to go still. Is every day perfect? No way. We still have what we call bad A days. Days where he doesn't want to sit at the table and do something that he's already shown us he could do the day before. He only eats 6 things, he is still in diapers, he cannot be trusted to drink from a regular glass, he doesn't know the difference yet between loud and quiet. Although being able to converse with him is definitely in our sights it too is still a long way off. He still doesn't respond to his name about 85% of the time but heck he is responding 15% more often than he did a year ago. Progress is progress and we'll take it on any level.
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| This is my favorite response when I say, "Come Here Zander!" |
We owe all of Zander's progress to ABA. I only wish we'd found it sooner. We are very hopeful that Zander will be in the lucky 60% that will go on to attend mainstream school and eventually become a productive member of society with little or no assistance. However there's no way to know for sure and we've learned to take it one week/day/month at a time. Zander is going to be whomever God wants him to be and we will always do our best to challenge and support him along the way. We spent a year and a half in the Autism Bubble. We allowed it to take over every aspect of our life but no more. I'm happy to say that we are getting back to life and WE are making the decisions now not the Autism.
I will try to figure out how to get some videos of Zander up before the big symptoms of Autism took over, after and then maybe some of him doing ABA so you can actually see where he started and how far he's come!
