What does successful autism parenting look like? It is a common phrase within the autism community that if you have met one person with autism, you have met one person with autism. The same can be said about autism parents.
Our experience with autism began as many others have, tests to attempt to rule out other issues, followed by the distressing news that it was indeed autism. Both of our children were diagnosed at a very young age. As a result, for those not as observant, the behaviors were sometimes difficult to distinguish from neurotypical children.
However, as they grew older, the gap between our children and their peers began to widen at an ever increasing rate. This was especially true of our daughter. While both children were on the severe end of the spectrum, we described our son as content in his world and our daughter as miserable in our world.
Our daughter began to be more and more destructive, both to property and people. Books and other papers would be ripped up if we turned our back for a moment. She destroyed our living on a daily basis, picking the paint and paper on the outside of the drywall from the ceiling to the floor. The hardest was what she would do to our younger children. If I left the room and one of our siblings messed with how she organized her toys, I would rush back to screaming and sometimes injuries.
We really tried to manage her behaviors with respite and other parenting strategies. The truth was that our daughter’s behavior was tearing apart our family. If something was not done quickly, everything, including our marriage, was going to fall apart.
We made the difficult decision to have our nine-year-old daughter move into a group home. Although we knew it was for the best, it was emotionally devastating. We felt like we had failed our daughter. It didn’t help that we received some harsh criticism from other autism families.
While our son was generally easier to manage, things changed dramatically when he reached puberty. He would hit my wife to try and make her cry as a way of expressing his own sadness and frustration. Being a big and strong boy, this was something that could not continue. The painful decision that we thought we would have to make only once was now to be repeated.
Although each child went into different group homes at different times, we are thankful that they are now together in the same group home. There are many times that we feel the weight of the difficult decisions we had to make. At the same time, there is no doubt that we did what was the right thing to do for our family.
Our children come home for regular overnight visits and it is such a pleasant time. We are able to enjoy our son and daughter fully, not having the daily pressure of destructive behaviors. We actually find that even when they are having difficult times at their group home, they seem to save all their good behavior for our visits. Our times together are filled with the laughs and hugs of a family freed to express love. Having both of them living together has also been beneficial to them and we have seen tremendous growth in development.
Putting a child (or children) in a group home is not for every family. Many families will be able to manage the behaviors and to find the respite needed to make it work. For others, circumstances require decisions that are terribly painful. No parent can make a decision like this lightly. However, seeing a child go into a group home does not make one an unsuccessful autism parent. Success is doing the right thing, no matter how difficult, that will maximize the happiness and safety of the entire family, including the parents and the child.
Stephen Bedard is a pastor in St. Catharines, Ontario, Canada, where he lives with his wife Amanda and three of his five children. He is the author of How to Make your Church Autism-Friendly and he blogs regularly at www.hopesreason.com.
This article was featured in Issue 55 – Celebrating with the People We Love