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“Only when you really accept does the healing start.”
So Mary Ward, a teacher at Southeast Halifax High School in North Carolina and the mother of Marvin, who is 3 years old and autistic, said to a special education advisory group about her experience raising her son. Ward is further quoted in the Independent-Messenger:
“It’s very difficult for a mother to acknowledge that her beautiful child’s brain is wired different…and yet only when you really accept does the healing start.”
…….
“One of the things I realized early on is I could be resentful the rest of my life and my child would still be autistic.”
………..
“He has the right to be autistic,” Ward said of her son. “And you have the right to respect that he is autistic.”
Ward’s words are all the more important to hear in the midst of all of the uproar over the offensively worded New York University Child Study Center‘s “Ransom Notes” public awareness campaign. There is a tendency for people to think of acceptance—accepting that one’s child has an autism diagnosis, that one’s child is disabled and different—as passive, as “giving in” and even “surrendering” to a disorder (a kidnapper, to borrow the imagery of the “Ransom Notes” campaign); people often instead take a deliberately aggressive stance and talk about fighting, defeating, curing, doing away with, overcoming, etc., autism. But acceptance can be active too, and even more active than attempts to cure one’s child of autism: Acceptance involves a parent, a person, changing her or his own ways of thinking, acting and being in the interest of what is best for an autistic person. To me, being my son Charlie’s has meant that I have had to change myself and to learn to see the world from his perspective.
Ward is writing a book about raising her son Marvin about both the “joys and the confusion” of parenting an autistic child. “‘“There are some things he will never learn, but that’s OK. There are some things that we will never learn,’” she says. (In my case, I will never learn to swim under a wave several feet taller than me as Charlie does so naturally in the ocean.)
It’s the violence of the language of the “Ransom Notes” campaign that continues to trouble me, the notion that A Disorder Called Autism or Bulimia or Depression “has” my child. My life with my son is not always easy; Charlie’s challenges are many. To emphasize the daily horrors of life with autism, some often list the stereotypical “kaka” (“bad things in ancient Greek) of life with a child who self-injures or who is my son’s age and does not make it to the bathroom in time or whose speech is at a “preschool level,” if that: These are all the case with my son. And it is also the case that the understanding that starts with acceptance and also individualized, attentive, and compassionate education have helped my son to learn how to communicate his frustrations and not self-injure, to get into that bathroom in time, and to speak, in however short phrases and sentences. It can be shocking for a parent to learn that their child has autism or an eating disorder. It is healing to learn how to help your child; for myself, the first step in helping Charlie was to accept him as he is, different, disabled, autistic.
Some see autism as a violent invader in their lives; as an uninvited guest who consumes and makes a household miserable. But the violence here comes from language like that in the “Ransom Notes” campaign, whose billboards and kiosk ads were indeed designed to be intrusive, and “harsh and upsetting” and perhaps all the more so, because the campaign has debuted during the holiday seeing, when I for one am grateful that I’m the mother of a boy named Charlie, an autistic boy, yes, sweet and with a lot of spunk and very observant (he was very quick to help himself to a stack of “brownie cake” we’d made together when I stepped out of the kitchen for a moment last night, and then to laugh at my bemused expression).
It’s definitely time to let the healing start.
IEP meetings get me into full advocacy mode, after and before! I just spent the past few weeks going back and forth over a few points about my son’s speech services; I really wanted to get it right. I’ve had some very difficult exchanges with administrators and “outside contracts” brought in/hired to “manage” my son’s behaviors; we had eventually to move to another time (and in with my husband’s parents—long story there).
I made the reference to the brownies at the very end of this post because my son would certainly eat the whole pan and end up with a colossal stomach ache if I did not say no.
Another parent (his son is a teenager) recently spoke about how we need to figure out some way of talking about the limitations and impairments of our kids, while still always maintaining that they do have unique talents and abilities. I stumble a lot in trying to keep both in balance—aiming high but knowing where we’re standing.
Kristina:
Your response precisely represents my feelings on autism. I’ve had to learn a lot of patience and alternate ways of looking at things and doing things. And these alternate ways of doing things are 180 degrees different than what I did in my “previous” life/career (such as learning patience, which was something in short supply with me before TW was born). I agree with you, administrative personnel (yes, it’s the school system…) can make things hellish. They have responsibilities to help children with special needs, yet they find a mountain of roadblocks that make it difficult for our sons to get the help to which they are LEGALLY ENTITLED. Yep, I’ve been fired up today, as we had an IEP meeting today. It’s just disgusting that the school systems break politics over the backs of our children, and it’s really pathetic that they are breaking politics over the backs of a constituency that cannot voice their own needs! Some things do get easier as our sons get older (TW is 6), but their singleminded, intrinsic curiosity about every thing in this world can be dangerous.
What the world needs to know is that every autistic child presents their autism in their own way. No two autistic children present their disability (or disabilities) the same way. In some circumstances, autism can heighten wonderful skills for children. The world, however, needs to remember that these children have individual needs and individual talents. Sorry for the long post… Thanks for hearing me out…
We’ve been through a lot as you have to help our son and it’s shaken my husband and me to the core of everything at times. Through it all, I’ve felt sustained by our son–he has had so many struggles. I’ve had to change a lot of my views and aspirations to adapt myself in ways that are best suited for our son. It’s been the other people (some administrative personnel in particular) who have made things on occasion hellish—-though Charlie has lots of limitations. things have gotten much easier as he has gotten older, quite to my surprise. Best wishes—
Is it not possible to accept the child and not the autism? I accept my son and all of his strengths and weaknesses. However, I don’t embrace the autism, because it is like a cloud around his brain, and he struggles to break free of the cloud to be able to communicate with others. We don’t let autism hold him back. All of us understand what it is like to have an uninvited guest in our home, and how difficult that can be. Autism is like the uninvited guest who stays longer than they are welcome. Parents and families do the best they can, despite having the uninvited meddling in every part of their lives. Autism is like an uninvited guest…you learn to make the best of things despite the uninvited guest. In learning how to make the best of the situation with autism, it is inevitable that parents of autistic children go through hell and back until they find out what suits their children’s particular needs the best. What parents of autistic children call a relatively normal day would probably be viewed by parents of typically-developing children as a rather hellish day…
I enjoyed Ben, but wondered…he got a lable and I quit enjoying him and was manic to “save” him…then I came to accept him, and have never looked back.
Life is so much better after acceptance, but I guess everybody has to go through their own stages to learn that.