Boss

It's that day each month where you are pulled here to be pushed elsewhere. You know where - Hopeful Parents. And let me tell you, it has been a hopeful, chock-full week for this parent, advocate, person. And still, I bring you back to last month with my tale here.

Boss

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****Hopeful Parents has changed its platform and so all links were broken. I will work through correcting them, but also past the full entries for past posts into FJC. Thanks for your patience.****

Boss

I wonder about my daughter’s road to self-advocacy. I wonder how one directs her own life, chooses and executes a career doing something meaningful and rewarding to her, how one decides how and where she will live, who she will surround herself with, and how she will spend her time – I wonder how this is done amidst alternative communication, alternative cognition and a one-of-a-kind attention span.

I wonder.

But I do not worry.

I hit send on an email informing the rest of her IEP team that Addie would be taking part in, and contributing to, her own IEP from here on out. She’d been present in the past, but did not actively participate. She’s in second grade now and we agreed it’s time she had a say. We weren’t certain how this would work.

Addie’s IEP team is stocked with believers, critical thinkers, measured risk-takers. We have had our moments, but I wouldn’t trade any of those in for where we are today. The IEP meeting was an amiable, productive one, with much of the collaboration among us done in the weeks beforehand. We don’t have the kind of IEPs I hear about that involve contention, bombshells, part 2, and part 3.... A lot went into (and continues to go into) arriving at this positive, very teamy approach, but it’s right where we want it, right where it does the most good for the one whose future we gather to envision and support. I am grateful for that on a daily basis.

Clearly delighted to have a room full of people that work for her (because we all work for her), Addie made the most of her position as boss. After sitting with us at the table for quite a while employing various tricks to ensure we appreciated her presence, she began to move around the room a bit. While her iPad grabbed her attention intermittently, alas her communication device did not.
Though our focus on Addie was sporadically individual and collective during the process, it appeared she had no interjections of her own on the topic of her education for the next year. Internal debate ensued in my head and heart about whether to ask a direct question of her in the hopes of an answer, or to leave it open for her and not limit what she would contribute to the parameters of my question. I willed someone else, preferably Addie herself, to be the one to bring her into the discussion - the discussion about her.

Meanwhile, our analysis and hopeful plans where made official: plans for the next steps with her communication device, strategies for extending the great literacy foundation she’s demonstrated this year, discussion of her powerful inclinations towards science and music, deliberation on how to leverage her absolute devotion to technology in a broader range of academic areas, anticipation of what third grade will hold for her – and what she holds for third grade - as she continues to access the general curriculum in the least restrictive environment for her – the regular classroom.

As business wrapped up and the tone lightened even more, all eyes settled on Addie, as she would have it. With lightening quick judgment, she recognized this as her time. She stood up and stepped backwards, positioning herself right in front of the only door in the room. No one would leave now.

A question was asked or a comment made. I don’t know what and I don’t know by whom. [I asked my husband to read through this and his only comment was that it was me who asked if she had anything to add. I have no recollection of this, so it must remain relegated to brackets.]

Her crescent eyes arch closed as the corners of her mouth pushed her cheeks up. She bent slightly and tightened her fists – this was to be a full body smile. Expertly executing dramatic pause, she held us at bay a few moments longer.

When she was ready to pull the trigger, her right hand shot up to her forehead, pointer resting briefly above the temple before flinging out and forward. It was accompanied by a barely perceptible tip of her head in the same direction. Full body smile unaffected by this concise monologue.

In delighted unison, her IEP team interpreted her American Sign Language; together we gave voice to her declaration. In this statement, she both summarized the entire IEP meeting and threw down the gauntlet for the coming year.

“I’m smart.”

And so I wonder...

But I don’t worry.

She's Not Kidding Around

Off to school with her clipboard, pens and pledge forms.



Spread the Word to End the Word

List

Cracking through a full agenda this week I did, in fact, get one thing done today - my Hopeful Parents post!

Read it here:
List

Check.

Ought To Be

My Hopeful Parents post day fell in a good place this month and I am grateful.

Ought to Be

Wishing you both peace and the power to change something - today and every day after it.

(Full HP post found below)

Ought To Be

"All I'm saying is simply this, that all life is interrelated, that somehow we're caught in an inescapable network of mutuality tied in a single garment of destiny. Whatever affects one directly affects all indirectly. For some strange reason, I can never be what I ought to be until you are what you ought to be. You can never be what you ought to be until I am what I ought to be. This is the interrelated structure of reality." Martin Luther King, Jr.

It doesn’t take long. As parents of children with differences, we tend to cut to the chase rather swiftly once we’ve understood that we are talking to one who knows this way of living. I ask bolder questions, I lay more of my own truths on the table, eye contact is extended and personal space contracts slightly. While we tell ourselves it’s because this person is a “safe” person, this is one who gets it; I believe there’s a bit more than that. For me there is, anyway. Every single stone must be turned over and examined. I cannot afford to leave any as they are. It would not be fair to her.

And each person I meet with perspective on disability is such a stone.

I ask, I answer, I wonder if this other person holds a clue, a key. Will this other mother put something in words that shed enough light for me to act? With this dad describe something in our lives in such a way that clarifies for me my next move? Do they know someone who knows someone who I should talk to? Will their counter to my view set me on a new, more direct path?

Opportunist, yes. Not void of compassion, understanding or appreciation for mere connection. Not unsympathetic or single-minded or lacking reciprocity. But still. The stone must be turned.

It must be turned because the vision we have formed for her is not one of staid, smiling subsistence. Her character, her strength, confidence and humor, her clear preferences and affinities, her complexity and wit, her superpower of creating the circumstances she wants, all of that and more makes the too common projection for those with intellectual disabilities – a life of adult daycare or superfluous workshop “work” for pennies, possible over-medication, once per week bowling, wide open hours of nothingness, endless receiving, gaping caverns where the act of giving should be, a life peppered with patronizing pats on the hand meant to evoke spiritless smiles – who she is right now makes that life absolutely unimaginable, impossible for her.

She requires more simply because she is human, yes; because to be a full citizen of the planet means to connect to and contribute to the rest of humanity. But I am often surprised when I am faced with description of a young child with differences in ability similar to my daughter’s and I am told with 100% assurance that this child will never be independent to any degree, will never live on her own, will never engage in work that means something to her. What then, I want to ask, will this seedling who is already excused from a life of intention, what will she actually do as an adult, then? What will she do as a child, for that matter, if there is no trajectory, no vision, nothing to prepare for? How are hours of childhood spent if not in laying the foundation for a self-designed future - to the extent possible - through social, ethical, functional and academic experimentation?

What ought this child to be right now, then? As she grows?

My daughter will not “be my constant companion,” as is so often offered as a consolation by strangers when they observe the alternative communication between she and I or coupled with their shocked reaction upon hearing the answer to their inquiry about her age. She will not, in fact, “always be with me.” “May God bless you for your trouble,” they tell me with heads tilted to the side, toppling with the load of generous intention. Alas, they have it backwards. It is not her life that is contingent upon my desire for companionship, but rather my daily occupation that is contingent upon what both my daughters require to ensure they lead the healthy lives they intend to lead as adults. May they be guided in their choices, for I have long since made my own.

Go ahead; ask her what she wants to be when she grows up, as you might any 8 year old. Though it may take her a while to express it and you may lack the ability to understand her response, she has an answer. She knows she ought to be something pretty amazing.

My questions will not stop. Stones will not cease being turned. Trees will not cease being shaken. Both of my children are destined for feats untold, as your children and your neighbor’s children are. An obstacle for my child is an obstacle for your child. An obstacle for your child is an obstacle for mine. “Whatever affects one directly affects all indirectly.”

May each of us see where potential greatness on any scale is being thwarted, may we call oppression what it is. May we speak against it. May we act to end it.

Wishing you a provocative Martin Luther King, Jr. Day.