I celebrate surpassing 50,000 hits with, of course, a repost! While I did not receive this particular piece of mail this year, I think of it every time part of who my child is is twisted into becoming someone else's feel-good charitable act of selflessness - more often this time of year. I appreciate acts of generosity and kindness and the intention behind them. But we have two happy, healthy children living full lives in our home. There is real need out there. One needn't search too long to identify and address it.
Readers, thank you for your vists and revisits to Farmer John Cheese. We love having you here, 50,000 times and beyond.
Jarring Mail, from October of 2009:
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.
_________________________________________________________________________________
Saturday, December 10, 2011
Wednesday, November 16, 2011
That Thing I Don't Talk About
I'm at Hopeful Parents today, though I've had more hopeful days.
That Thing I Don't Talk About
I can trust you with this, right?
That Thing I Don't Talk About
I pull into the driveway and glance up to my porch. In front of the door sits a big brown non-descript package. There could be ANYTHING in there. A surprise! Each month I indulge my fancy and play the part of someone who does not already know what she will find when she tears the packing tape off and unfolds the flaps. I try my best to conjure the limitless expectations of Darren McGavin’s character, Ralphie’s dad, in A Christmas Story as his “major award” is delivered. It’s here, it’s here! Some days I even tap my fingertips across an invisible word on the cardboard and slowly, profoundly emulate his wishful interpretation of the letters, “fra GEE lay.” The irony is that though the box doesn’t actually bear such a stamp, my forehead could easily read “fragile” at such moments.
Upon my first kick-shove of the box into the front door, the game ends. For I know what it is. It came last month and the month before. It’ll come next month.
It is nothing so fantastic, light and burden-free as a leg-shaped lamp.
Sometimes I let it sit just inside the front door where I won’t often pass it. I pretend that it’s too bulky for my short self to carry downstairs and dispatch into its storage space with what’s left from the last box. Rare are the times it doesn’t send me to such willful denial of its existence that I’m rendered unable to spirit it away in the name of tidy, objective detail management.
Today I let it sit.
This box changes nothing, adds nothing, promises nothing. It’s not a surprise for my girls; it’s nothing for me or for my husband, our house or our cars. It’s not full of gifts I’ve carefully picked out for others. In fact, we have no choice at all in this. It’s delivered for the cognitive and communicative differences, low muscle tone, sensory issues and motor processing problems that conspire to make this box a requirement on a monthly basis.
Inside are purple-wrapped cubicle stacks from the medical supply company for my 8 year old with Rubinstein-Taybi Syndrome. The customer “care” reps at the company are sticklers about calling them incontinence products. The generic looking logo on the package demurely refers to them as pull ups. But I call them what they are: diapers.
Diapers have been in our lives for more than 12 years, with a brief respite of about 18 months in there before my younger daughter was born. I have only 2 kids. Sure, my mom had 10 kids and used cloth diapers, so she has me way beat in quantity, duration and effort. But from the very beginning she had a general idea of when it would end.
It’s the fact that there is no clear path to the end that makes it daunting. I have long ceased finding the act of doing the changing particularly inconvenient when we are at home. It’s just part of everything now. But the ways we have to consider her dignity, her privacy - who knows, who doesn’t know, who might mention it around whom – that is what’s exhausting now. Energy further evaporates when I inevitably wonder if we’ll still be managing these things a decade from now, 2 decades, 4…
We grapple with the few scant invitations and social engagements she gets, wondering how we can figure the logistics if she needs to be freshened. When we visit other homes, I measure how long we’ll stay by whether the host is likely to be able to discreetly handle my request for a plastic bag and to know where the outdoor garbage receptacle is without asking too many questions. We size up public restrooms, worrying about space, germs and location of waste bins.
Low rider pants are a bane when you have a child who employs a sensory satisfying stance of a tripod - hands and feet near each other on the ground and her derriere airborne. The slippage of her Levi’s partners with the impossibly high waist of the papery Medicaid-funded pull-up knock-offs to leave no shred of mystery.
You can’t chat about this with your family and friends. Even my friends within the disability world, we guard our child’s dignity and our own fragile case we keep some things in, and we keep quiet. I can’t bear to hear the earnest suggestions of others, thinking I’d never considered the techniques used with my older daughter, thinking perhaps the problem is that I have given up. I haven’t. I believe in my heart of hearts that it will happen one day. Whether that day is weeks, years or decades from now is the question. The blithe statement mothers of preschoolers offer mothers of toddlers sends me to a place I don’t like to spend too much time in. “Well, don’t worry, it’s not like she’ll go off to college in diapers.” It’s possible. A kid could go off to college in diapers. If that kid would be accommodated in college, that is.
There are worse things, yes. But it adds a daily layer of complication and general hope-suck that compound the energy-devouring effort already put into every single detail of this disability life.
This is just so incongruous with who she is, how clever she is, what a social, complex, witty, inquisitive, powerful young lady she is. Whether we want to admit it or not, knowing someone wears diapers whether as a result of being very young, very old or very different, it simplifies that person in most people’s eyes. It reduces them. Her dad, her sister and I are in constant combat with this reduction of our limitless girl every single day.
There it all is, laid out. I cross my fingers for her dignity, that you who know her and read this will protect it as you would her physical being. I cross my fingers that the combination lock requiring so many developmental mysteries to align just so, clicks and pops open one day.
I cross my fingers for a porch void of anti-surprise packages.
That Thing I Don't Talk About
I can trust you with this, right?
That Thing I Don't Talk About
I pull into the driveway and glance up to my porch. In front of the door sits a big brown non-descript package. There could be ANYTHING in there. A surprise! Each month I indulge my fancy and play the part of someone who does not already know what she will find when she tears the packing tape off and unfolds the flaps. I try my best to conjure the limitless expectations of Darren McGavin’s character, Ralphie’s dad, in A Christmas Story as his “major award” is delivered. It’s here, it’s here! Some days I even tap my fingertips across an invisible word on the cardboard and slowly, profoundly emulate his wishful interpretation of the letters, “fra GEE lay.” The irony is that though the box doesn’t actually bear such a stamp, my forehead could easily read “fragile” at such moments.
Upon my first kick-shove of the box into the front door, the game ends. For I know what it is. It came last month and the month before. It’ll come next month.
It is nothing so fantastic, light and burden-free as a leg-shaped lamp.
Sometimes I let it sit just inside the front door where I won’t often pass it. I pretend that it’s too bulky for my short self to carry downstairs and dispatch into its storage space with what’s left from the last box. Rare are the times it doesn’t send me to such willful denial of its existence that I’m rendered unable to spirit it away in the name of tidy, objective detail management.
Today I let it sit.
This box changes nothing, adds nothing, promises nothing. It’s not a surprise for my girls; it’s nothing for me or for my husband, our house or our cars. It’s not full of gifts I’ve carefully picked out for others. In fact, we have no choice at all in this. It’s delivered for the cognitive and communicative differences, low muscle tone, sensory issues and motor processing problems that conspire to make this box a requirement on a monthly basis.
Inside are purple-wrapped cubicle stacks from the medical supply company for my 8 year old with Rubinstein-Taybi Syndrome. The customer “care” reps at the company are sticklers about calling them incontinence products. The generic looking logo on the package demurely refers to them as pull ups. But I call them what they are: diapers.
Diapers have been in our lives for more than 12 years, with a brief respite of about 18 months in there before my younger daughter was born. I have only 2 kids. Sure, my mom had 10 kids and used cloth diapers, so she has me way beat in quantity, duration and effort. But from the very beginning she had a general idea of when it would end.
It’s the fact that there is no clear path to the end that makes it daunting. I have long ceased finding the act of doing the changing particularly inconvenient when we are at home. It’s just part of everything now. But the ways we have to consider her dignity, her privacy - who knows, who doesn’t know, who might mention it around whom – that is what’s exhausting now. Energy further evaporates when I inevitably wonder if we’ll still be managing these things a decade from now, 2 decades, 4…
We grapple with the few scant invitations and social engagements she gets, wondering how we can figure the logistics if she needs to be freshened. When we visit other homes, I measure how long we’ll stay by whether the host is likely to be able to discreetly handle my request for a plastic bag and to know where the outdoor garbage receptacle is without asking too many questions. We size up public restrooms, worrying about space, germs and location of waste bins.
Low rider pants are a bane when you have a child who employs a sensory satisfying stance of a tripod - hands and feet near each other on the ground and her derriere airborne. The slippage of her Levi’s partners with the impossibly high waist of the papery Medicaid-funded pull-up knock-offs to leave no shred of mystery.
You can’t chat about this with your family and friends. Even my friends within the disability world, we guard our child’s dignity and our own fragile case we keep some things in, and we keep quiet. I can’t bear to hear the earnest suggestions of others, thinking I’d never considered the techniques used with my older daughter, thinking perhaps the problem is that I have given up. I haven’t. I believe in my heart of hearts that it will happen one day. Whether that day is weeks, years or decades from now is the question. The blithe statement mothers of preschoolers offer mothers of toddlers sends me to a place I don’t like to spend too much time in. “Well, don’t worry, it’s not like she’ll go off to college in diapers.” It’s possible. A kid could go off to college in diapers. If that kid would be accommodated in college, that is.
There are worse things, yes. But it adds a daily layer of complication and general hope-suck that compound the energy-devouring effort already put into every single detail of this disability life.
This is just so incongruous with who she is, how clever she is, what a social, complex, witty, inquisitive, powerful young lady she is. Whether we want to admit it or not, knowing someone wears diapers whether as a result of being very young, very old or very different, it simplifies that person in most people’s eyes. It reduces them. Her dad, her sister and I are in constant combat with this reduction of our limitless girl every single day.
There it all is, laid out. I cross my fingers for her dignity, that you who know her and read this will protect it as you would her physical being. I cross my fingers that the combination lock requiring so many developmental mysteries to align just so, clicks and pops open one day.
I cross my fingers for a porch void of anti-surprise packages.
Sunday, October 16, 2011
Reminded to See
Today's Hopeful Parents post is a recycling of an FJC post from nearly exactly 2 years ago. A variety of factors make it timely once again.
Here's hoping for a world full of seers so that all might be seen.
See
Here's hoping for a world full of seers so that all might be seen.
See
Saturday, September 17, 2011
One Day Late
Delayed by one day, my September post at Hopeful Parents is up. It's a little story about a lady who got to lay her protective gear down and take the day off.
Click over and check it out:
Extraneous
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