It is 3:00 am. I have been up for hours. I have had a week from hell, on many levels both personally and professionally and because those realms of my life often interlace I am in a spiral of madness.
I sat with parents this week in many meetings about their children with autism. I can totally understand their grief, as I too experience it. Sure we could banter back and forth about whose child is more impacted…..yeah, I don’t know what it would be like to have to use sign language or PECS to communicate with my daughter like some do, but that doesn’t lessen the impact for me or my dreams.
What hurts my heart so badly, is the process in which parents are told that there child’s intellectual capacity is limited and then what we as professionals do with that information.
At one point many years ago I was the parent sitting around the big table and I heard the words ‘mentally retarded’ and oh yah! I was pissed at the man delivering the news–how dare he be so callous, so raw. Yet, the seed was planted. Years later when further testing was done and those words came back to haunt me, my reaction was softer, was more open to hearing. I realized that I needed to hear those words. If the issue was danced around the first time, I would not have been able to hear it years later and we would not be where we are today, on all levels.
So as I sit and listen to the issues being danced around in meetings on other children, I am so saddened and so frustrated that we are really doing an unjustice to this child as well as the parents. The parents need to know how this will impact the child. That does not mean for one second we give up hope or we stop teaching—no, it means that we are reasonable, we are truthful. We build skills that we know the child can use and grow on. Do we continue to bang our heads on the wall trying to get a 12 year old child to read/write that is functioning at age 3 when we could be working on functional skills? The clock is ticking.
I had the honor of knowing a young man that I met when he was in 7th grade and his Asperger’s was getting into the way of him being succesful at school. I was his 1:1 para for a few months, eventually he built skills to be more independent with emotional regulation, anxiety, organization, etc….and went on to be fairly successful (academically). Last spring, I cried when I watched him walk across the stage to get his diploma. I was proud, yet frightened for his future. Many academic eggs were placed in the basket and while social skills were worked on some, it was the academics that were pushed. This young man chose to not participate in the post high school transition services until age 21 that would have offered him living on your own skills, employment skills, social skills etc….
He is now on his third job within 2 months. He can’t keep a job. And he has average intelligence.
I would guess it isn’t because he can’t do the job…. he can’t do the social skills and the problem solving. Those were the skills that were were considered ‘after the academics’. Teachers didn’t want him to miss that film on Ancient China, because that is applicable, where learning to relate to peers is just so unneccessary.. sarcastic, yes! bitter, yes!
So how does all of this tie to me, personally? My daughter, whose intellectual capacity is limited, is heading to high school. Will she be spending her time doing meaningless activities for the ‘credit’ or will she have an opportunity to experience peer interactions, problem solving? Will a para solve the problems for her, so that her behavior is “fine”? Will the need for a credit overcome the opportunity to learn meaningful skills?
If we as parents and professionals cannot face the reality, regardless of IQ or adaptive scores, that these kids need meaningful and functional skills, we are not doing justice.
I can’t be part of that process anymore. Parents need to know. Teachers need to know. Skills need to be built.
It is time for me to look for another job. Perhaps one where I can serve coffee with a green apron and a smile.