Posted in family life

holding open doors of possibility

Rondel loves the zoo. I think he would want to go there almost every day (some days have to be for Grandma’s house) if possible, and he never wants to leave no matter how long we’ve been there. There are always more animals to see, more wonders to explore, more facts to learn. As much as he enjoys the splash pad, he always asks to see another exhibit instead, despite the heat, until I mandate a water break on behalf of his siblings.

So I thought to myself, I wonder if the zoo is doing any summer camps? Rondel will probably still be too young, but I can still see what’s available. Blithely thinking these things, I went onto their website and discovered that Rondel is not too young by any means, and would be eligible to attend a half-day camp focusing either on animal stories or animal art.

Part of me leaped up in excitement! He loves the zoo! What a great opportunity! How awesome would it be to get to spend that much time at the zoo, talking about animals, looking at animals, surrounded by people who also love animals! What a chance to try to integrate with a group of peers, in an environment without a parent, to stretch his comfort zone and expand his social skills! And oh… what about dealing with loud groups, bright sunlight, the challenges of speech articulation delays, and the anxiety of the unknown? This is, after all, the boy who struggles in a typical Sunday school classroom even with a personal aide, and the boy who cries at the park if he turns around and can’t see me – even if I haven’t moved from where he left me. Would a summer camp be an adventure or a nightmare?

My husband had the wisest words about this dilemma, about the dichotomy between excitement and fear: that if we, as Rondel’s parents, make a decision for him based on our fears of what might happen, based on what we think his limitations and struggles might be, than we are placing that limitation on him instead of giving him a chance to grow and soar and potentially surprise us all with his abilities. We would need to plan well for it, obviously, to give him the best possible chance to succeed and to give him a way out if it proved to be too much, but it would be foolish – especially in the long-term – to simply close this door because we fear he will fail.

It reminded me of a passage from (you guessed it!) Differently Wired. (Reber really seems to have covered everything. I promise I didn’t begin writing this post trying to sneak a quote in!)

“Choosing fear equates our child with their diagnosis, rather than seeing them as creative beings who are here to shake up the world in their own magnificent way. Choosing fear is the very thing that keeps us stuck. Choosing fear creates a culture of apprehension and anxiety in our families, and affects the way our children, many of whom are already highly sensitive and anxious, feel about themselves. Operating from fear leads to more limited thinking and fearful energy, which both we and our child will feel, and less chance of our child’s uncovering and experiencing their extraordinary possibilities. It’s the epitome of a self-fulfilling prophecy.”

Instead of choosing to direct my child away from opportunities and experiences because I’m afraid they’ll be too hard for him, I am choosing to present him with the options and let him come to his own informed decision – and then, I am choosing to support him through the results of that decision, even if they prove to be difficult or unpleasant. That is the process that will help him grow in self-awareness and confidence, that will help him develop autonomy and independence, and that will therefore help him grow into greater possibilities instead of holding him back in a box created by my own anxious and limited imagination.


If you liked the quote from Differently Wired, read my brief review of the book here and check back in June for the giveaway!

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Posted in family life, musings, quotes

wonder

Watching my children play, I am reminded of the wonder and beauty of small and simple things. There is enough joy in a glass of milk to send a three year old dancing around the kitchen; there is enough beauty in a well-done coloring page to keep a distractible, active four year old still and entranced watching it happen; there is enough passion in a stuffed animal to occupy the full attention and imagination of the one year old who walk around snuggling and protecting it. Continue reading “wonder”

Posted in family life

pea gravel!

When we moved into our new house last summer, the home had been mostly fixed up (aside from a few plumbing issues that surfaced in our first month living here… old pipes) but the yards were completely flat dirt. Horrible dusty barren dirt, too, filled with trash; even the Bermuda grass could only survive in a few patches.

We’ve been slowly trying to make the space both aesthetically pleasing and functional, so towards that end we got twenty tons of pea gravel delivered one weekend, to fill in a play area in the back yard.

IMG_9028.jpg Continue reading “pea gravel!”

Posted in family life, information, musings

acceptance vs. awareness

I’ve been spending a lot of time on Pinterest lately, in an effort to avoid Facebook (and while waiting for my books on hold to become available!), and I’ve found some really encouraging, helpful, and inspiring posts! I’ve also found quite a few off-the-wall recipes that I’ve made to varying familial approval… but let’s not dwell on that.

I think the following two images which I found there are amazing examples of the difference between awareness of autism and acceptance of autism (the first was uploaded directly to Pinterest by a user, and the second is from the Thirty Days of Autism blog):

Notice how in the first poster only the negative effects of autism are mentioned: meltdowns, avoidance, tears, frustration, worry, and stress. Autism is an evil, something that one needs to fight through with hope and prayer, like a sickness that needs to be overcome and that left unchecked would destroy one’s life. (And if it were a sickness, like cancer, that would be more than fine! As it is actually a neurological and developmental difference that is always going to be part of who a person is, however, this attitude can feel like a personal attack on an autistic individual’s identity.)

In contrast, the second poster focuses on the unique behaviors caused by autism – things that are different from normal, but neutral rather than negative: parallel play, a need for space, deep focus and passion, love of technology, and stimming. Autism is portrayed as a part of who that family is – something for which they love each other, not something despite which they love each other. Acceptance gives them the freedom to be themselves, however autistic that self might be, while still receiving unconditional love and support in the midst of their individual needs and struggles.

Let’s just say I know which lens I’d rather be seen through – and therefore, which perspective I want to take when raising my differently wired child.

Posted in family life, musings

fear of change

After eight years of working in a genomics research center, I’ll be transitioning to being a stay-at-home parent a week from now. Technically I’ll be working eight hours a week, in a sort of consultant role, which will keep me connected to the science – but it will still be a big change. It’s what I’ve been wanting ever since Rondel was born almost four years ago – but as it approaches, I find myself becoming more and more anxious.

I like my job, and I am good at my job. My supervisor respects me and my opinions; the researchers who rely on the services our facility provides respect me and my scientific knowledge and experience. I know what types of problems are most likely to arise, and I have tools and strategies for troubleshooting them. And I know that if I put in time, effort, and energy, I will have a successful outcome.

To be totally honest, I really like having the respect of other professionals whose opinion I value and who do innovative and important research. It gives me self-confidence: I may be a complete wreck if I have to call my doctor to schedule an appointment, but when I sit down with a researcher to discuss their experiment and figure out the best plan for them to take moving forward, I am completely at ease. It also gives me a sense of identity and self-definition: when acquaintances ask what I do, I can tell them about the science and feel that I’m doing something of worth, something that uses my talents and gifts, something beyond just staying at home and cleaning and cooking like any other person could do.

At the heart of my nervousness about the transition, then, I think, is a fear of losing that respect and identity – of becoming part of the crowd, no one in particular, no one with any valuable skills or gifts to offer my community. When I spend time with other moms, I feel so inadequate in the areas they are gifted in: my home is rarely clean, laundry and meals happen on an as-needed basis rather than with planning, small talk eludes me, playdates terrify me, schedules and extra activities overwhelm me, my children are dirty and wild. My mind is usually lost in a book, or an idea, or a project, instead of focusing on the people around me. I say nothing and feel isolated, or I say too much and still never manage to connect with anyone else. I simply don’t have the skills that these other women have, and without them, I’m not sure where I can fit in or belong in the mom world (especially the homeschool mom world… those women are so organized that I give up just at the thought of trying to be like them).

In the workforce, in academia, where everyone is a bit weird and everyone is valued simply for the expertise they offer, I knew where I fit in and I knew how I could flourish.

In this new world, I’m afraid I won’t ever be able to flourish – and that in my lack of flourishing, I will stunt my children’s future as well.

I’m not going to let my fears make a decision for me, when I believe on principle that a self-directed education is ideal for children, and when I observe pragmatically the stress that a classroom environment would add to our family life. I’m going to choose to let my love for my family be the motivating factor here instead!

But I’m still afraid.

Posted in family life

his hands were dancing

Hands are useful communicators.

Sometimes we use them deliberately, pointing at an object of interest or gesturing to show how large or small an item is.

Other times they are less intentional – for example, someone may scratch their head or rub their chin while thinking, subtly communicating to others that now is not a good time to interrupt them, or that the pause in the conversation doesn’t mean they aren’t paying attention!

Sometimes we are able to communicate emotions or needs with our hands faster than we are able to share them verbally.

My husband and my mom will both notice when my hands drift to my arms and start picking (a sign of escalating tension or anxiety, typically), and try to address whatever is going on; it would be very difficult for me to break into the flow of the conversation to bring up my anxiety until I was much closer to a meltdown.

Another good example of this is from Rondel the other afternoon, when he saw a bee near Aubade in the kiddie pool and started flapping his hands frantically until I came over and asked what was wrong; he told me later that his hands were telling me that he needed me. The worry of the moment made it difficult for him to access the relevant words, but his hands were able to alert me that something was going on.

Probably my favorite expression of hand communication, however, comes from a moment when Rondel’s hands were demonstrating a thrill of joy.

We were stopped at a red light waiting to turn left out of our neighborhood, and the boys asked me why we weren’t moving. “We’re waiting for the light to turn green,’ I explained, and showed them where to watch for the green light. When it finally turned green, Rondel’s hands went crazy waving around – and a minute later, when he had calmed down, he told me (referring to himself as “you”) that “Your hands were dancing because you were so excited that the light turned green!”

His hands were dancing.

I can’t really think of a more beautiful way to express the unadulterated, uninhibited demonstration of joy and excitement that is Rondel’s happy hand flapping. His hands were communicating to me the rush of pleasure that he was feeling, allowing me to share in it more deeply than a verbal declaration would have accomplished.

Posted in family life, musings

stepping outside of routine

Change is hard. Routines give life structure and reduce anxiety. This is probably especially true in a partially autistic household…

But sometimes, you have to swallow your fears and set out into the great wide somewhere, without knowing what might happen, even expecting that something may happen for which you are utterly unprepared.

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And then, sometimes – more often than your fears would lead you to believe – there is freedom, and there is joy.

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There are places and times when the beauty and the wonder overcomes the discomfort of uncertainty or freezing water, and happiness can reign uncontested.

There are moments when the lure of the next rock over proves greater than your apprehension about the deep pool that lies between you and it, and moments when crossing over through your fears ends up being one of the best parts of your day because that thing you were so worried about is actually something you love, that brings out the adventurer in your soul.

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It takes a lot of energy to step outside the normal and comfortable patterns of everyday life; I’ve discovered that I need to plan for a day of rest and recovery afterwards. But the thrill of living more fully, more expansively, less bound by our anxieties and routines, is very often worth it.

And for me, the scent of the clean air, the caress of the warm sun, the rhythm of the flowing water, the strength and grace in every line of plant and rock – those things are always worth the effort it takes to find them.

(Many thanks to the friends who made this possible by inviting us along and giving me a safety net to quiet my anxieties! I wouldn’t have gone without the assurance of helping adult hands, since my husband wasn’t able to come along, and now I know that I am capable of handling this kind of adventure on my own in the future. Your support was invaluable for the moment as well as for the moments that are still to come.)