We were so optimistic about Sam's school considering that at our temporary ARD they told us that they would be using ABA methods and Discrete Trial Training, which is MANDATORY for Sam to learn. We relayed this to them, showed them proof of a year of therapy, which I like to call "traditional" in which Sam did not meet a single goal. During that year I remember taking Sam to his speech and occupational therapy sessions and watching him cry, struggle, have full-on meltdowns which included sometimes trying to bite. You must understand that this is not my Sam, he has always been exceptionally chilled out and we never had an issue with tantrums..unless we were in his previous therapy. I look back and certainly wish that I could have enrolled Sam in ABA therapy sooner but the reality for us was that we couldn't afford to pay $85-$100 per hour for ABA therapy, yeah you read that right per hour. We aren't just talking about 2 hours a week here, it can be recommended to do up to 40 per week which comes out to $3400-4000 monthly. Our insurance doesn't cover the ABA therapy despite it being a scientifically proven method of therapy for children with autism. So, this is why we applied for grant after grant after grant and finally we found Masonic Children & Family Services and The Brent Woodall Foundation. Thank you God for them both. The Brent Woodall foundation charges the least amount of any ABA location that I have found to date and believe me I have found a lot.
So back on the topic of Sam's new school. We go in for his play based assessment and in the room we have Sam's Speech therapist, Occupational therapist, school psychologist and oddly enough not his teacher. In any case they begin the assessment and Sam is wandering around the room doing his thing, and of course not paying any attention to them. They get him seated and are trying to get him to comply with the assessment, not using one single aba method or discrete trial training method and of course he is not doing anything. So I get the bag of motivators (favorite toys, snacks) that I brought from home and I ask if I can try, so I get down on the floor show him one of his favorite yo gabba gabba books and begin. He immediately starts paying attention and doing the tasks in front of him. The problem with this picture is that I am down on the floor conducting my own child's assessment at his school in a room full of professionals that claimed to use ABA methods and Discrete Trial Training. Not one of them even tried to use those methods for my son. What use is there in taking Sam to a school that refuses to help him in the way that is not only absolutely necessary for him to learn and not only that but it is documented as such.
At the end of the assessment they leave and then come back in with a report of everything for us all to look over. I won't go over everything in detail but two issues in particular stuck-out. They began to discuss with me that Sam did not use his PECS book properly at school. Which is odd because he uses it properly at home and in his ABA therapy program. They proceeded to tell me that he plays with the icons and mouth's them. The problem with this statement is that his teacher and her teaching assistant are supposedly trained in PECS and I provided them in detail what step Sam is on in his PECS program in writing. He is on phase 2 step 1 which very clearly stated that he have access to one icon at a time. And if they had taken literally 1 minute to read the program, or I don't know just listen to me when I explained it to them or actually BE trained in PECS and not just say they were, then that would have been awesome.
My second issue was that they made the statement that Sam did not communicate at all and that it was going to be a goal to help him to do that. Now, it took me a minute to not say something ugly to them.. but I held my tongue for a moment, took a deep breathe and started talking. I told them that Sam absolutely communicates, he does not speak, but he communicates. He requests items with his PECS (which they weren't using properly), he points, he physically pulls your hand to things or pushes you to things. He will come get an adult to help him if he wants something, even if he can get it for himself. He definitely needs help to broaden this and with spoken communication, but he communicates. If they were doing their job as his teachers and therapists and making that extra effort to work with him, then they would have seen that as well. We see it, BWF sees it, my parents see it, my friends and all of my family sees it.
After talking with Tracy at BWF and having some serious discussions of our own, we are most likely going to pull Sam out of preschool and increase his hours of ABA therapy at least until the Fall, and then re-approach it then. We do have an ARD meeting coming up on the 18th and we will discuss our major concerns, and ask that they provide Sam with a BCBA and that they be trained on how to work with him by the BCBA. We are also going to ask that they provide Sam with ABA therapy, after all they provide children with Speech and Occupational therapy when necessary, why not ABA. We fully expect them to say no, but we will ask and we will fight for Sam and the other children with autism that need ABA. One day we won't be stuck in the 60's of autism anymore, it won't be this arduous uphill battle to simply get the therapy that works for your child.
One day parents that receive a diagnosis of autism for their child will get to deal with the battle directly, deal with their own emotions and autism and not have to also fight for help.
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