This morning she responded to my comment in a post titled, Autism and the Real World: Changing Parenting Strategies and after reading it I feel the need to clarify my comment.I do agree with some of your points here Brenda and when the boys were younger I did incorporate many songs into their daily routine and requests. However, as they have aged I have done away with many of the songs in favor of visual schedules and reminders.I don't think it is a good idea to customize every interaction with our ASD children around their behavior. IMHO Parenting should still be parenting and sometimes that means being the bad guy and putting your foot down.When my sons grow up and are living in community homes I can guarantee the adults they come in contact with are not going to be singing them a song or using special voices. I think they are better prepared for their futures by having firm, reachable goals and expectations placed on them now as they age and grow in maturity.
When the boys were younger and first learning the nuts and bolts of how to communicate their needs I experimented with creative ways to help them understand the rules of our home and the world at large. With Sam I created special songs for bath time, bed time, and other transitional period whereas with Noah I used PECS and sign language because what worked for one did not work for the other (Sam has always been motivated by music whereas Noah will plug his ears and hum loudly to drown it out).
However, as they have grown some of the earlier strategies are no longer adequate or effective. I rarely use sign language anymore, Sam's need for transitional songs has lessened and the PECS cards are gone from everywhere but the bathroom and their daily schedules. Just as my children developed and matured my parenting methods needed to as well.
I have found Social Stories to be especially positive and motivating. I created my first social story for Sam to help prepare him for hospitalization and surgery when he had his tonsils and adenoids removed. Since then I have created dozens of others for trips to the doctor for check-ups and necessary vaccines, visits with friends, eating in restaurants, and most recently on how to use good words.
Similarly as the boys have reached new milestones their defiant behaviors have also changed. Sam has always had tendencies to fall into aggression when frustrated or when told, "No" but recently he has also developed quite the colorful vocabulary thanks to a failed YouTube filter which allowed him access to videos and music using swear words and phrases. Noah shows his displeasure in roughly the same ways he did when he was small. Mostly by throwing himself to the ground and screaming or by just throwing items across the room.
As you can imagine the way I discipline my boys has also evolved. When the boys were first diagnosed typical discipline such as spanking and time outs were neither desirable nor effective. I could not see the logic in spanking a child for hitting to teach him that hitting is wrong and because of their limited cognition I similarly could not expect them to understand the cause and effect of bad behavior equaling sitting in a chair for the number of minutes equal to their age.
In those days the only person who really needed a time out was me.
I needed a safe place to put the boys where they would neither hurt themselves or me. This meant they spent a short amount of time in the safety of their room alone while I sat outside it trying not to completely lose it. Thankfully for a time Sam qualified for a 1:1 aide who shadowed him in our home five hours a day five days a week helping him diffuse his aggression using behavior modification techniques. For the first few years this worked well for Sam.
Until it didn't anymore.
It meant that Sam was maturing and with the gain of new milestones I needed to rethink how best to guide him towards being a better listener and towards making better choices.
The primary method of discipline I use today with Sam and Noah is taking away privileges and preferred items. For instance, when Sam calls Mike, "Mr. Cocksucker" for being told to turn down the volume on his iPad he loses all electronic activities for one day. This means no iPad, computer, or Wii until the next day. He has learned the consequences of using bad words by reading and re-reading the social story I created for him about the subject.
The point I am trying to make is that what works for one parent may not work for the other and that as our autistic children mature into adults the way we discipline may need to change as well.
When I mentioned in my comment that I was skeptical about future caregivers utilizing songs and other playful methods of setting boundaries with my children it was not based on fear but rather on acknowledging the reality of of today's care for autistic adults who require long-term care and those who care for them. The fact is my sons will more than likely need 1:1 care for the rest of their lives and it is neither realistic nor fair to assume I will be the one to give them the level of care they deserve.
The fact that I acknowledge this now while my sons are still young does not mean I have given up hope. It means I am considering both who they are and where they are right now when planning for their futures.
In 2012 the options for lower functioning autistic adults is not ideal but they are slowly improving. Many states are doing away with institutions in favor of group (or community) homes and in some areas there are excellent programs being created to provide opportunities to learn a trade which will lead to gainful employment. Two such programs are Farmsteads of New England and Roses for Autism. My hope is that in ten to twenty years projects such as these will be the norm and that those served within them will be integrated further into society as a whole.
I stand by my opinion that it is important for parents to set boundaries with their children, autistic or not, and I don't believe that doing so cripples their future emotional health or well being. I build their love of play by doing the activities they find silly and fun and they gain confidence through the reachable goals set forth both at home and at school.
What tears me apart is an all or nothing attitude towards raising children on the spectrum. I don't have time for those who disguise their judgement as advice and then become defensive when someone disagrees. I believe there are many methods towards ensuring our children grow up to be healthy, well-rounded adults and what works for my family may not work for yours.
