"Once you accept that your child will be different - not better or worse,
just different - that's the first step." ~Unknown
I don’t have a child or grandchild with an intellectual or another kind of disability.
But I learned soon after starting my position as a Line Therapist at one agency and a job coach for another organization that I shared something with the parents of my clients. You see, nearly nine years ago I lost my oldest son. 27-years-old and in the springtime of his life. He was taken suddenly in a freak accident while serving in the Army. His death spiraled me into a deep grief and pain, the likes of which I had never personally experienced. All my hopes and dreams for watching him as he advanced his life came crashing down around me. I would never see him achieve the high goals he had for his career. I would never see him get married to his fiance or hold his first child. It was all lost in a matter of moments in that field in Grafenwoehr Germany.
When I began to get to know the families of my clients, I could sense we had a connection.
One day, while talking with a Mom, she began to cry as she described the hopes she had when her beautiful boy was born. How she thought he would perhaps play ball like his brother or learn to play the piano like her. But the day she received the diagnosis of Autism, she felt those dreams come crashing down around her as well. What did this mean for the future of her son?
I could sense a deep grief that she was carrying. The pain of the loss of what she had dreamed for her child.
So will you allow me, an outsider, to tell you about an important part of the healing process when facing such grief?
You've no doubt heard of the stages of grief, and they are certainly real. Consider your diagnosis and how you may have walked through the steps: Denial, anger, bargaining, depression and acceptance. Perhaps you've never seen the diagnosis you received as a loss, so this may be new to you. You may feel that you are fully in acceptance right now. After all, are you not doing all you can to deal with the fact that your child has Autism or another spectrum disorder? If that is not accepting the facts, then what is?
I too was convinced that I had fully accepted my son's death a few years back. But I was shown how wrong I was.
I sat in a counselor's office discussing my son's death and telling her how pleased I was with how I seemed to have come through it. She listened carefully, and then said something that knocked me for a bit of a loop. "As you talk about your son, I get a sense that you still don't quite believe he's not still out there in some way. It's like you expect him to come home. Like he's still here." Her opinion was that I could not certainly be in the phase of 'acceptance' if I did not accept that Seth was indeed dead. That whatever life he had lived up to the day he died was all that he was going to live. I could continue his memory and keep those memories alive, but there would be no new ones. It was then that I came to understand fully what true acceptance was.
So I ask you. Have you accepted the facts of your child's diagnosis?
I think we might believe that accepting a diagnosis means giving up and not seeing any hope for improvement. But in reality, it's much more subtle than that. The diagnosis your child received is not like getting diagnosed with Leukemia or another type of disease. Autism and Intellectual Disability are not an illness or even a condition. These are just different ways of a brain working from what we consider to be typical. Therefore, your acceptance of your child's way of thinking and living means you work to bring them into the world that may not understand them.
Because this diagnosis is not about getting cured, or even better.
Living with Autism and accepting its nuances is about adaptation and adjustment. This is what ABA (
What is ABA?) provides your child. It is not a cure, and you may never see marked improvement in some areas of your child's ability. But you will see changes and adjustments as they are guided toward behaviors and responses that will help them to find their place in the world.
As Therapists and Disability Support Specialists, we are an integral part of that process. We accept and welcome the unique ways your child lives in their world. Still, we are not you - the most important and extraordinary people in their world. Your acceptance and support are what matters to your child.
You are not giving up when you accept.
You are simply freeing yourself, your family and your child to find the adaptive ways which will enhance their opportunities to the fullest. It's not expecting less - on the contrary - it's allowing more to be done with what we have before us. The hope of healing and recovery is not in this picture.
Perhaps we have shifted sharply from the days when children with Intellectual Disabilities would automatically end up in an institution. That was the exact definition of giving up. Letting society tell you what the 'best' solution would be. The proportionate response says 'my kid is just exactly who they were built to be. We understand your fear, but we don't have to honor it." Trust me; I get what it's like to be treated as though you are cursed or carry some disease.
I have grown to accept that my son is never coming back.
And through that, I have found expansion in the ways I celebrate who he was and honor his memory. I have grown in the ways I can share how his loss changed my life, and I can finally allow myself to be truly happy again. And not feel guilty or delusional. I continue to work on carrying the weight that is the loss of a child. It is a daily purposeful effort, as is yours. Acceptance was the beginning of my ability to find my way back to life again. I hope it can be yours.