To those who provide support to adults with Autism, I know that parents can be perceived as being over-protective and hard to please. I can understand, at times, that from their perspective, we may be perceived as such. I want to share with you my experience in parenting my son, who I love very much. My hope is that it will be helpful to all adult service agencies and support staff working with individuals with Autism, in understanding a parental perspective.
Let me start out by saying that I feel that most support staff see my son as a likeable guy. I also think that most support staff have his best interests at heart. They have enjoyed him, and want him to be safe and healthy. They have been well trained in safety techniques, and for that I am deeply grateful. I also understand that the developmental disability system does not pay support staff commensurate with their responsibilities, and that staff shortages make their job harder and more stressful. I do not leave the need for higher salaries unmentioned when I advocate for better services. In fact, the need for professional pay is at the top of my list as I address my senator and representative.
I have always tried to voice my appreciation to support staff for the work they have done or presently do to support my son. I hope they know that I am sincere. I also know that I am far from perfect. I can express myself at times in an impatient manner. At times they have done the same. There are times I am more stressed out than others. We are all human. If at any time I have offended any staff, I apologize. That was never my intent. I also want to say, from my perspective, that I feel most of the time, staff and I have interacted with each other is in a friendly manner, often with some humor mixed in.
Parenting my son, has brought so many positive things to my life…learning to communicate with and understand mostly non-verbal communication, patience, ability to put myself in someone else’s shoes, the gift of appreciating not only what a person does but also importantly, what a person brings to one’s life just by being who they are- their gifts.. I do not diminish any of this when I say that parenting him has also been stressful. He struggles to communicate; he is very sensitive to how he physically feels. What may be a minor discomfort to us is very anxiety-provoking for him. A more minor discomfort may remind him of a time when that minor discomfort, whether it be in his ears, teeth, sinuses, head, stomach etc., felt much worse. That causes anxiety that in itself can be very uncomfortable and desregulating. Before I developed a visual chart that could be used by him to point to how he feels, he would always respond verbally “O.K” when asked how he was feeling. Many times it was clear he was not “O.K.”. Even when the visual chart was developed, there was a lot of tweaking of how to use it most effectively with him. We have gone through some rough times in trying to figure out what was bothering him.
My life has revolved around trying to understand his needs, learning how he communicates (which is mostly nonverbal, even though he can talk for some purposes, like requesting candy). As I described, he is not able to just come out and tell you if something is bothering him, he cannot talk about his feelings, nor does he easily share information about his day, he is not able to initiate a topic of conversation or to keep a conversation going.
My son has always needed a lot of support. He needs someone with him at all times. It was never easy to be in social situations as he often struggled with busy settings, and supporting him in being there was the priority. We did not have many vacations without him and vacations with him, by necessity had to be planned around his needs. His needs for intensive support did not go away when on vacation. Indeed, going on a vacation was not an option the last number of years he lived with us. So when it has appeared that I am “overly involved” and “overly protective”, please realize how deeply involved in his life and development I have always been. It is an unrealistic expectation for me to back off and” let go”. I feel it is important to share what I know with those who support him. I want my son and his needs to be understood and for their work to be made easier by the knowledge I share.
Now that he is not living with us, figuring out ways to be connected are evolving. For example, since a familiar and everyday routine is what he is comfortable with, I have had to adjust to him not really being comfortable at our house for the holidays. Where he lives now is home to him and his routines there are what bring him comfort. So we visit with him there on the holidays. After all, being together is the important thing. I am letting go of things I feel are appropriate, but know that acceptance of him not coming home for the holidays has not come without some sadness.
What was helpful to me and support staff was to meet directly and talk about what I was feeling and what they were feeling. I have tried my best to see things from their perspective. But it was helpful to more clearly understand all the requirements of their job. I was able to clarify and review my son’s needs, specifically around communication and dietary restrictions. The discussion allowed for us to learn from and to feel more comfortable with each other. Misunderstandings were cleared up.
My hope is that by sharing my experience, agency management and support staff will better understand the parental perspective and that other parents will feel supported in their ongoing advocacy for their son or daughter. I think it works best when we try to “walk in someone else’s shoes” and if we don’t understand, to ask.