Wading into the world takes achingly long when comparing the expectation with the reality. Vibrant expectations swirl and dance a tempting flurry of ease and take no time to build the skills needed in real life. Disappointment embraces ecstatic expectation when stories walk along a more difficult path. Finding the wonder and natural tempo in working to achieve shimmers and eventually outlasts fleeting expectation.
Posted in Autism, autistic, body/mind disconnect
Tagged Autism, autistic, challenges, communication, comparing, difficulty, expectation, expectations, life, poetry, reality, skill building, typing to communicate
*Emma asked that I post this today.
Yesterday, during Emma’s RPM session (not with me, but with the person who does weekly RPM sessions with her) she was asked to talk about something where she compared and contrasted.
Emma wrote the following…
“Part of All Buildings”
“For thousands of years and as long as buildings have existed, walls are covered.
“Generational trends have shifted. The idea of paint versus wallpaper is one to give attention to. Ask yourself what has changed in trends. Did you ever think to believe the walls around you influenced change?
“Wallpaper with precious patterns are torn apart in many current buildings. Paint has won the walls of this generation.
“If you believe your environment can change parts of you, keep reading.
“I am wondering if those who surround themselves with precious patterns have bigger imaginations than those with simple paint. It is easier to become friends with colorful patterns.
“They can both get dirty. In wallpaper the wear becomes welcomed more.
“I can do the research and report back!”
Wallpaper versus Paint
Posted in Autism, communication, RPM
Tagged Autism, autistic, comparing, contrasting, Parenting, Rapid Prompting Method, RPM, typing to communicate, Wallpaper vs Paint, writing to communicate
When my daughter was eight I was so envious of my friends who had daughters the same age, because they were going out together, having mother/daughter outings, getting pedicures, doing girlie things and I despaired that I would never have these kinds of outings with my child. I know how selfish this sounds. I know this statement is all about me and has nothing to do with my child or her interests or her feelings. I always dislike hearing parents talk about their children as though they were some sort of glorified extension of themselves, like a conduit for all the parent’s failings, as though this child was a metaphoric phoenix rising from the parent’s DNA, destined to be all that the parent hopes for, but has failed to do and be themselves. But at the time I did feel envy and also, was aware enough to also feel badly for having those feelings.
Flash forward to this summer.
A friend of ours returned home one Saturday afternoon with Emma, who ecstatically showed off her newly painted RED toenails. I was astonished. “You guys went and had a pedicure?” I asked. “Red toenails!” Emma exclaimed with glee, while positioning her foot next to our friend’s, who had the same color red on her toenails. “They match!” Since then Emma and I have gone every other weekend for our “pedicure spa” where we sit side by side and have our toenails painted. Emma picks out the color, which she insists we both have so that we “match.” Both of us look forward to these outings.
There are other examples of times I’ve despaired, thinking that whatever our current situation is, it will remain so forever. This is not specific to my daughter, but is something I am aware that I have a tendency to do in life and always have. The idea that things are fluid and constantly change, is a tough concept for me. I tend towards extreme thinking. When things seem bleak, I am convinced they will always be. When things are good I am suspicious and await the inevitable.
It is as though I believe I will have to pay for those good times, like an invisible law that shows no mercy. The good times are tempered with the “knowing” that they will be fleeting and won’t last. Over the decades I’ve gotten better at this, I am aware this is my tendency. I catch my thoughts quicker and am able to remind myself that I do not know what will happen next. But still I find myself easily sliding back into that old way of thinking. It’s not the reality of someone else’s life, it is the idea of someone else’s life that I compare myself to and that idea is never true.
These days I try to head off comparing the minute I become aware of it. It does not serve me. It does nothing to help me. I am not a better person because of it. It makes me sad and miserable and has nothing to do with either of my children or my life. In fact that thinking hurts my children. Both are highly sensitive to other people’s moods, they easily pick up on emotions and take them on.
At the moment, Emma and I are sporting pink toenails and every time I see our toes, I smile. They remind me of all those years when everything seemed grim and hopeless. When despair surrounded my every breath, when desperation hung in the air I breathed, when I believed I knew what we were up against, when I believed this was going to be our life, when I thought I knew and no one could convince me otherwise. That toenail polish, that gorgeous pink toenail polish that Emma insisted we both wear is proof of just how wrong I was. About everything. About everything.
Posted in Autism, mother/daughter, Parenting
Tagged Autism, believing, Compare and Despair, comparing, envy, family, having faith, Parent, Parenting, Pedicure
When I was in eighth grade I had a “Wellness” class given by a classmate’s mother who had been a child actor and model. The boys were separated out and taken to (presumably) a similar class given by a male equivalent. (I have to wonder now, where exactly did they go? Who was the male equivalent? At the time, I never thought to ask.) All the eighth grade girls sat in a circle on the ground in front of this woman who stood before us in all her coiffed, fine featured, perfumed glory, wearing an oh-so-chic, red pants suit (this was the early ’70’s) and looking like she had just walked off a shoot for the cover of a fashion magazine. (Which, in fact, she had.)
I felt completely inadequate in comparison and all the more so as I sat listening to her glowing accounts of what she did for exercise, the wholesome meals she ate and her disciplined daily use of various emollients. I remember falling into despair as I listened to her, not only because I didn’t know what emollients were, or couldn’t imagine a life that did not include glazed jelly doughnuts, but because everything about her was foreign to me, forget that hers was not a life I had ever thought about having, let alone wanting. But as I sat there I was aware that I should want to be just like her. She represented all that was beautiful and unobtainable and I, in direct contrast, represented all that was wanting. I’ve never forgotten her.
When I gave birth to each of my children, the one thing I wanted more than anything else was to make sure they never felt ashamed of themselves. I wanted to make sure they felt supported, loved and valued for who they were, exactly as they were. I wanted to be sure I cheered them on, to model for them kindness, generosity, compassion and good work ethics. I swore to myself I would do my best to respect them and to listen to them. And then we were given Emma’s diagnosis and suddenly those goals took a back seat to the goal of her being “mainstreamed” and “indistinguishable from her peers.” Those two goals rammed up against my desire for her to feel self-love, self-acceptance, self-worth. For a couple of years I lost my way. In my desperation I allowed others to dictate what I should do and what I should want for my daughter. I forgot that my early goals for her were more important than anything else.
I began to look for an Autistic adult who I could imagine my daughter might be like. I wanted to find someone who might represent a possibility of what I might expect. I read what books I could find, written by Autistic adults, but concluded these adults were much “higher” functioning than my child. It wasn’t until later that someone pointed out these adults who had written and had published books, were at least twenty years older than my daughter and therefore had more than twenty years of learning, experience and growth that my daughter had not had the advantage of. Undeterred, I kept looking anyway. Even when I found someone who seemed to have similar language challenges, their upbringing differed greatly, their interests led them in other directions, I could never quite imagine my daughter growing up to be just like them.
Searching for Autistic adults who might be a version of my daughter was grounded in a desire to calm my fears. It was a misguided attempt to comfort myself. By saying – well this person is speaking so clearly, able to have their needs known and heard, therefore perhaps my daughter will be able to one day do the same, I was hoping to quell my worries. A shared neurology with random people does not mean anything more than it does to compare my shared non Autistic neurology with the same. Without meaning to I was replicating that “wellness” class over and over only now it was my daughter I imagined sitting cross-legged on the ground looking up at someone she would never grow up to be like. This or that person is not an adult replica of my daughter any more than that woman teaching the Wellness class was an adult version of me.
I want and hope my daughter will feel empowered to be who she is without amendment. The best way I can ensure she feel empowered is by listening to her, honoring her, celebrating and embracing her, exactly as she is in this moment. I must give her the support she needs to communicate, show her the different methods she can use to communicate so she knows she has choices and believe in her. And there’s another piece to this, which is this – my issue of self-worth, with not being that fine featured, delicate nosed, thin hipped, flat chested version of ideal woman I grew up believing meant happiness, is mine to work through and not my daughter’s. This may seem obvious to many of you, but it is something I must remind myself of. I have to ask myself often, is this my issue or hers? Comparing Emma to adults, to any adult is most definitely my issue and it is one I am trying hard not to pass along to her.
Posted in Autism, mother/daughter, Parenting
Tagged Autism, autistic, comparing, family, Parent, Role Models, self esteem, self-confidence, self-worth
Emma's Hope Book 