Tuesday, October 26, 2010

Run the Risk

The regular ed teacher who isn't trained in curriculum modifications does not desire to see your child fail.

The special ed teacher who suggests your child be pulled out for math class doesn't do it because he believes your child has no business attempting math.

The speech and language pathologist who resists more sophisticated assistive technology for communication doesn't do so because she thinks your child has nothing to say.

The occupational therapist doesn't make zipping a zipper a greater priority for your child than learning to write her name because he wants to see your child left in the dust.

The physical therapist who advises the IEP team against inclusion in the regular PE class doesn't do so because she bears ill will towards your child.

The administrator who forgets to require that all kids, including those in special ed, attend the anti-bullying assembly doesn't do it because he believes your child should go ahead and accept bullying as a fact of life.

The kids who linger and stare at your child in the hall or on the street do not do so because they are inherently mean children that wish the worst on your sweet child.

The other parents who look away when you and your child roll up to the playground and begin the wheelchair transfer onto the swing don't avert their eyes because they think your child doesn't belong at the park.

All of these are the result pressure, lack of confidence, unanswered questions and private struggles.

These people need your help. Their view is obstructed by red tape, scant resources, confusion and sometimes pain - they cannot see just how limitless your child's potential is, how complex her personality is, how dynamic his sense of humor is, how great her future may be. In gaining that understanding, they take your lead. A great number of them are just waiting for you to guide them around their own blockage so they can see your child clearly.

In accepting this leadership role, you run the risk of knowing what people's true intentions are, of understanding where their confusion and questions lie and having to address them, of acknowledging what pressures they are up against. You run the risk of taking partial accountability for helping them get past some of those things enough to give your kid a fighting chance. And you won't always come out on top.

But run that risk anyway.

Those people are worth it and the future of your child, of my child, of all children, depends upon it.

Saturday, October 16, 2010

Right On Time

One more click to get there on Hopeful Parents:

Right On Time

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Friday, October 8, 2010

Compelled to Post a 3rd Time

Another rerun - and I've already reposted this once. Let me explain. I got this form in the mail again today, one year after this was originally posted. I do not think/feel one whit differently about it than I did 12 months ago.

I opened a seemingly innocuous piece of mail today and was smacked in the face by it. No, it was not an evaluation or assessment implying my clever 6 year old is really only a toddler developmentally. Nope, wasn't results from medical tests that portend painful procedures in her future. Wasn't even a copy of an IEP written by someone with an entirely different interpretation of every decision made during the meeting. None of that.

It was an offer. A gift. A helping hand. A helping hand that nudged me away from all points of reference I currently hold with regards to my daughter's place in the world.

It was a note from a respite agency we are not currently active with as we have no respite services at this time. But we are still "on the list" and so we get mail and newsletters.

Filled with graphics, fancy and fun fonts, and lots of exclamation points, this mail had 2 parts. Page one was to inform families to call the agency and let them know which kinds of books our child with special needs prefers. At some point after that, we're to come to the agency office to pick up books donated by Barnes and Noble.

The second page asked us to fill out a form that would be posted at local corporations leading up to the holidays. The employees of these corporations would select a form (based on arbitrary things like name, maybe - age, gift ideas) and shop for one item listed on it. We did this where I worked - we called it the Giving Tree. My assumption was that we were giving to those that could not otherwise obtain these gifts. I thought we were fulfilling a need.

But I am confused. My children receive books and toys for the holidays already. We are blessed to not count this among our worries, however modest our giving may be. We have shelves of books, library books from school and from our community library. We have toys and a swing set for our girls. We have enough to eat and can pay our mortgage. To paraphrase, we have enough so that we do not want, and we are able to give others.

As I'm reading through this act of generosity, of charity, I am not grateful. I don't feel prideful either, though it may sound like it. I am dumbfounded that my child is seen as unfortunate and in need. There are children that are, but my child's disability does not automatically put her in such a category.

When I am in the world, I don't see the pity anymore unless it is laser focused on us and articulated as such. I take Addie to school and the dynamic that would make her less fortunate than the other kids, in need of toys, books, food, attention - whatever, is just not visible to me. When we are in public, I don't see cocked heads wishing us mercy, I don't feel a hand patting mine, offering sympathy. I know I am somewhat selective about what I choose to internalize, but those things must be more present than I realize.

If Addie showed up at one of these corporations that will hang the gift tags for employees to grab and shop for a child with a disability, if she bobbed her blond head through the cubicles, if she waddled through, making her happy noises, operating her communication device to find out where the candy jar is (all workplaces have candy, kids know this), if she fixed her eyes on a department director and flung her healthy, squinting smile with a side dish of chuckle, would these people feel good about where their gifts of toys went? Would they feel like they made an impact in an otherwise toy-free, dreary life? Would they feel their part in the lives of those with disabilities had been played, that they can tally that up and cross it off the to-do's?

Probably not. I hope. Again, I don't think my bemusement comes from pride or lack of gratitude. The gesture is a beautiful one and certainly needed in these times all over. But I am confused that my child is automatically a charity target simply because she has a more complicated medical history than many kids, because she thinks, moves, talks differently than many. It feels somehow redundant to me, superfluous, to give my child, who is capable of making her own contributions to those in need, gifts of material things.

This mail reminded me of the reality that often our kids are seen only as receivers, not as givers. Whether this involves pity or a desire to "help" or not is an individual thing. I have had other parents at my older daughter's school comment on how the needs of the kids in special ed negatively impact what their own typical child gets at school, sarcastic comments about these kinds of kids being the "stars of the whole school." If my child is seen as a receiver or someone held up as more deserving than other kids, the gifts she really has to offer herself cannot be recognized, cannot be witnessed, cannot do the work of healing and bettering she intends for her talents to do, as everyone intends their contributions to society to do.

The form from the respite agency asks for a couple options of gifts under 25$, from which the corporate worker will choose 1, to be distributed unwrapped to the parent (so that the parent may use them as the gifts from themselves, if desired) in December.

I know that there is mad desire to give out there, to share - to give effectively, to make something better for someone. It's where this idea of giving toys to Addie and others with disabilities came from, from kindness and compassion, from wanting to lead a life of purpose. And I deeply appreciate it. But I offer an alternative gift tag wish list to ensure the gifts have definite impact on Addie.

Respite Agency, can you post it at ALL corporations, community buildings, schools, retail establishments, parks, entertainment venues..., please? All options listed are free and low to moderate effort. They will not be used as my gifts to Addie, but must come directly from the giver. By giving any of these to Addie, they are automatically given to others and come back to the giver in kind. She does not need these gifts by December, but throughout her entire life, any place, any time. All places. All times.
Name: Addie

Age: 6

Gift idea 1: See me. Don't see me only in terms of my disability. Witness me for who I am and decide whether or not my differences are a tragedy based on how I carry them, how I use them, how important or unimportant they seem to be to me in what I expect from the world and what I have to offer.

Gift idea 2: Hear me. I communicate constantly. I understand that you need to get used to how I do so. I will be patient with you. Try to hear the music I move to. You might find it more similar to your own than different.

Gift idea 3: Let me help you. I can. I am capable of filling a need you may have, whether it's a social one, a practical one, a paid one. I am 6 now, but I intend to do work that I can feel good about when I'm a grown up, to live as independently as possible. If you see me now, if you hear me now, witness my talents, you might just want to hire me, be my roommate, hang out with me...later.

Thanks in advance for your gifts. I can really use these.

Wednesday, October 6, 2010

Overheard: 2nd Installment

Passing by the playground as Addie and I started our walk/roll home today, we became active witnesses to the following:

Smiling excited blond first grader runs to the chain link fence and presses her grin into it, shouting "Addieeeeeeeee!" Her hand lifts in a manic wave that does not cease as she awaits Addie's response.

A less excited first grader who followed to the fence looks up and asks her waving blond playmate, "Why would you even like her?"

Happy girl keeps smiling and waving at Addie "Because she's a friend."

After Addie responds with a wave, the smiling girl ceases her smile, stops waving and guilelessly turns to her questioner, "Why would I even like you?"

Tuesday, October 5, 2010

Edit. Delete.

Calendar entry: Picture Retake Day
Are you sure you want to delete the calendar entry 'Picture Retake Day'?

Yes. I'm sure.