Wednesday, February 3, 2010

Whoops upside the head

I just found out about some growing up I need to do.

This weekend I saw my stepson butt scooting along the floor in the manner Hannah uses. He would slap his hands down and drag his bottom with one leg up and one down, just as Hannah does. More annoying was the "I'm a blithering idiot" look on his face, sort of a open mouthed maniacal grin. He stopped in his tracks when he saw the look of "thunder hear my cry" cross my face and got up without saying a word after we made eye contact. I cooled off for all of about one minute until I came back around past where he sat and I pointed and used my quiet voice and said "don't ever let me catch you mocking your sister." He proceeded to tell us he wasn't mocking and that he didn't know what mocking was. Lord Honey spent some time using the dictionary explaining mocking and I was fuming because this boy often plays less informed than he is, and even if he didn't know the definition of "mock" he absolutely knew he should not act in this way, as evidenced by his wordless cessation of activity when he found himself observed. I was angry at anyone who would ever think Hannah's way of moving worthy of anything other than praise and acceptance. I can envision that I might be filled with rage at many such possible incidents in the future.

On Monday night I read a post on To The Max, wherein Ellen, mother of Max, reacted strongly when seeing someone stare at her son who has cerebral palsy. Wisely, sagely, humanely, she evaluated her response and wrote about it, saying "I vowed that the next time we were around kids or adults who were staring at Max, I would start the conversation. For Max's benefit. For other people's benefit. For my benefit." Readers' comments ranged from confessing to reacting harshly to engaging in a wide variety of thought provoking responses, intended to help people learn about those with disabilities.

What?!? No violence? No scathing sarcasm? Is nothing sacred? Is there no small place of normalcy where I can let my true reaction show if this happens to my baby? How will I get to this place of acceptance? And one of teaching others? I didn't want to be the brave little toaster and I don't want Hannah to get up on the alter of self sacrifice for others' educational benefits. We don't want to be teachers. We want to live our lives.

My reaction to my son's behavior surprised me, and opened my mind up to the possibility that many such reactions may be in my future. And even more disturbingly, the possibility that I don't yet have my own moral compass in this regard. Have I always been appropriate when I react to others who have "differences"? Have I followed the directions of the billboard public relations campaigns saying "Don't Dis-Ability"? Was part of my reaction to my son inclusive of my response to the way his jaw and mouth are sometimes askew, leaving him not quite slack jawed but often mushy mouthed in speech? Am I unfair judging even him with a minor lack of normal speech structure? Have I treated him as he would want to be treated (not to include being left alone, as shy pre-teen boys seem to want)? How many times in my youth did I say "I'm so retarded!" when I was clumsy or goofy with my hands. Were my stares or sidelong glances beyond acceptable limits when I crossed paths with a person using an assisting device? Do I have the right level of smile, eye contact with acknowledgement of our common cause, but not too much attention when I cross paths with other parents at Shriners' Hospital? Who am I, when it comes to protecting my child from hurt? Can I do it without lashing out? Can I help people learn without punishing them for their ignorance?

What do I want for Hannah? I want Hannah to be able to suck the marrow from the bones of life, to have every good opportunity available to her at every stage of life, to be happy. I want her advancement socially and in school to be based on recognition of her brilliance and her grin and her jolly personality, and the way she is prone to laughing at any reason and feeling joy at every turn. I wish I could see her health conditions as some sort of blessing, but really, I don't. I see that most people get handed something hard, either for themselves or a loved one, and then you make the best of what you get and try to find all the joy you can while keeping balance with needs that must be met. But I don't feel blessed to have the bonus obstacles, I am only blessed to have the blessed baby herself, and the obstacles are part of the package.

I don't know how apparent her CP will be to others. Right now, we can "pass" because it is not out of the ordinary that she be carried in a public place at her age and her jacket hides her braces. Perhaps she will eventually walk without dragging her foot, or hold her arm in the way we see as normal, and not bent with her hand fisted tightly. I don't know. I do know I want her to look and feel as normal as she is able. But why do I want to have my kids be normal? I have to rethink everything about normal. I want my kids to have an easy life, not too easy, because the learning is in the meeting of challenges, but I don't want it to be too hard. I want my stepson to speak clearly, because if he doesn't, people will treat him as if he is stupid, and when he fulfils those expectations he may end up being less than he could be. I want Hannah to move like other kids, I think because I want the world to treat her well. I may know that her physical abilities don't equate to her worth, but will the rest of the world know that? Does trying to make her "normal" through therapy mean I don't just love her for who she is? Some folks have seemed surprised by all the efforts I put into physical and occupational therapy for her, as if means I don't accept her as she is. I don't think that is what it means, but will I be able to communicate that to her while pushing her to change? I think I have some thinking to do. And some learning how not to punch people.


  1. You know're going to get to this place---and it takes time---where it all starts to make sense. You accept it all, and you are doing fairly well. And THEN, it all suddenly clicks.

    Give yourself time.

    And don't punch people...yet! :)

  2. I think you're trying to do the very best for your little girl. And that is probably different for every family. I'm sorry you have to deal with the reaction of other people at the same time. I have a sister with a disability, and it is difficult to deal with sometimes, how people can be insensitive and callous. Different families deal with this in different ways. A friend of mine has a son with a disability, and in that family they all poke gentle fun at him so that he gets strong and learns to stand up for himself. Not sure I would go down that route, but it just shows everyone is different...

  3. " I want Hannah to be able to suck the marrow from the bones of life, to have every good opportunity available to her at every stage of life, to be happy."

    This reduced me to a babbling mess of tears. I so so so feel this way about my autistic child. I'm in such a state of grieving while simultaneously trying to move forward, work on what we can and accept what is. And yeah, I'm in therapy. LOL

  4. Korin, I hope the babbling mess of tears was at least cleansing in nature and not just the headachy sad kind. I too find that the juggling of the grief and the forward progressing while expressing joy to the child is fairly overwhelming. And oh yeah living our lives as a family where others have needs too. Oh yeah, gotta get on that.

    Mwa, you are always so kind here.

    Heather, I hope to find that place where it clicks, I wish I had the right road map to get there but the google directions seem sort of fractured and disjointed so far. Good thing I sometimes have unflappable optimism, but only sometimes.

  5. Gosh. I'm definitely the teacher type, but I've always been that way. I do think that when something is familiar, people handle it better, which is why I'm like that--ignorance breeds fear is my opinion.

    I don't see my child's disabilities as a blessing, but like you, I see them more as just part of the package. A really cute package at that.

  6. Your restraint and compassion are really admirable. Your daughter is lucky to have such a good Mom.