As I wrote a couple of weeks ago, October is Disability Awareness Month. Being both clergy and a parent of a child with a disability, I thought I would share some of my experience for other clergy and church leaders in terms of pastoral care to families of a child with a disability.
When, at twenty months old, our son AJ stopped talking completely, we knew something was wrong. Our son had never said much—just “Hi,” “Uh-oh,” and “Mama.” But he knew at least twenty baby signs, and he would pick a sign up in a day, such as “more” and “all done” and “milk.” But this all stopped by the time he was twenty months old. At twenty-two months he began speech therapy and continues to receive speech therapy today at the age of six.
When AJ was three, we received the life-changing diagnosis of autism. I didn’t know what to do, or what to think. I was completely overwhelmed by the amount of information on the internet and in bookstores, much of it contradictory. We tried different diets, we tried different supplements, but nothing really changed AJ’s social or behavioral patterns.
A good friend of mine who has a child with a disability gave me some advice: I needed to grieve the child I had lost. It sounds harsh. My child did not die, they just received a diagnosis, a medical categorization, but my child had not changed from who they were. But at the same time, she was absolutely right. I needed to grieve my own dreams and hopes for my child, now lost probably forever. My child will most likely not grow up to be a great scholar or star quarterback or Olympic swimmer.
The truth is, most of our kids don’t grow up to be those things. At some point, our dreams as parents have to die and we have to mourn their passing, but we usually have a lot more time to recognize it. Parents of children with disabilities or life-changing illnesses have to make this leap a lot earlier and a lot faster: we have to grieve, and then we have to accept our children.
But society around us is very slow to catch up. I cannot tell you how many well-intentioned people have told us “just look at Temple Grandin!” Very few children with autism grow up to be like Temple Grandin or have the resources her mother had when Temple was a child, to attend private school, to have a full-time nanny, to be sent to an alternative boarding school as a teen. Most of us do not have those kind of resources available. And even those with good financial resources cannot always expect that their child will develop and grow the same way. The mantra is, “If you’ve met one child on the autism spectrum, you have met one child on the autism spectrum.” Every child is unique.
The truth is as a society we like to gloss over the challenges and difficulties many people face, with good intentions: we want to cheer them up, we want them to find hope, and somehow we think that our words will bring that. Hearing so many times, “He’ll be all right,” “He’ll grow out of it,” “He’ll catch up,” does not help me at all. It’s true he will be all right, no matter what his diagnosis or ability. It is not true that he will grow out of it. And I do not know whether or not he will catch up, and neither will you, because I am guessing you are not an expert in autism spectrum disorder.
What is helpful is hearing, “That must be hard,” or “Thank you for sharing that with me,” when I or another parent of a child with a disability shares what they are going through. Also, silence is also acceptable. Just having someone to listen as we struggle and advocate and support our children is more than society often gives us.
I am a glass half-full kind of person. I still have a lot of hope for my son. Recently he is starting to verbalize more, repeating words and phrases from TV shows and songs for the most part, but he is using some of it in context. He seems to understand what he is being asked a lot more than he used to. He uses an assistive communication device (currently an iPad with speech software) to make his requests known and sometimes to comment on things that he likes. He also spells out words and is trying to read more. I have hope. Maybe someday he will go to college. Maybe someday I won’t have to buy large diapers in bulk. Maybe he will still live at home the rest of his life or have to live in an adult assisted living facility. And all of that is fine. One step at a time.
Thank you for listening to me. Please be sure to listen to other parents of children with disabilities.
My son spelled this out in my office one day. I know that I have to be his voice, until he can speak for himself.
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