...child with Standard Needs. Two of them, in fact.
Check out today's post at Hopeful Parents.
Standard Needs
Sunday, May 16, 2010
Friday, May 7, 2010
Not Needed
I post an uncharacteristically brief one today to neutralize a bit of nervous energy.
A year ago I wrote about getting the shaft for Mother's Day. That very event is taking place today for the new crop of junior kindergarten mothers. I wish for them a different experience than mine. There were too many practical expectations of me that day, so I got cheated out of what was supposed to be sepia-toned mental flip book of mom-honor and cuteness. Instead, my memories are red ones, memories of sweat, frustration and separation.
But today I write about getting an unexpected and absolutely thrilling gift from people I had never seen until a few months ago. I sought nothing from these people, and yet they have offered a string of varied sized pearls, one by one, since we met. We get a big one tomorrow.
Addie will go on a play date. A drop off play date. My presence is not expected. I am not needed. I would serve no purpose. I am not wanted.
There are many times I feel redundant with my 5th grader. Sometimes the feeling is justified and good, other times not so much. But the times I've felt superfluous when Addie's out in the world are rare indeed. I am a collector and hoarder of such times.
I know Addie's pal's dad is a reader here on FJC. I hope that he and his family understand that taking their daughter's lead in naturally and guilelessly reaching out to pluck Addie to be a part of their lives is precious and hopeful to me. Even her brother crossed his fingers when coming to pick his sister up from a play date at our house a few months ago, wishing that it went well so there would be a "next time" and they could host at their house. I hope they all understand that they are propping open a door that had been closed for nearly 7 years.
Addie and Megan won't see it that way - they'll just consider it a couple of friends hanging out. But I see it as a great vote of confidence for what is possible... maybe even probable, as we gradually turn the world over to Megan, Addie and all the other seedlings.
Happy Mother's Day, mother-readers. May you know the feeling of being completely and utterly unnecessary, even if just briefly.
A year ago I wrote about getting the shaft for Mother's Day. That very event is taking place today for the new crop of junior kindergarten mothers. I wish for them a different experience than mine. There were too many practical expectations of me that day, so I got cheated out of what was supposed to be sepia-toned mental flip book of mom-honor and cuteness. Instead, my memories are red ones, memories of sweat, frustration and separation.
But today I write about getting an unexpected and absolutely thrilling gift from people I had never seen until a few months ago. I sought nothing from these people, and yet they have offered a string of varied sized pearls, one by one, since we met. We get a big one tomorrow.
Addie will go on a play date. A drop off play date. My presence is not expected. I am not needed. I would serve no purpose. I am not wanted.
There are many times I feel redundant with my 5th grader. Sometimes the feeling is justified and good, other times not so much. But the times I've felt superfluous when Addie's out in the world are rare indeed. I am a collector and hoarder of such times.
I know Addie's pal's dad is a reader here on FJC. I hope that he and his family understand that taking their daughter's lead in naturally and guilelessly reaching out to pluck Addie to be a part of their lives is precious and hopeful to me. Even her brother crossed his fingers when coming to pick his sister up from a play date at our house a few months ago, wishing that it went well so there would be a "next time" and they could host at their house. I hope they all understand that they are propping open a door that had been closed for nearly 7 years.
Addie and Megan won't see it that way - they'll just consider it a couple of friends hanging out. But I see it as a great vote of confidence for what is possible... maybe even probable, as we gradually turn the world over to Megan, Addie and all the other seedlings.
Happy Mother's Day, mother-readers. May you know the feeling of being completely and utterly unnecessary, even if just briefly.
Wednesday, April 28, 2010
Rerun: Jarring Mail
The following post from October 9, 2009 is rebroadcast at reader request:
*************************************************************************
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.
_________________________________________________________________________________
*************************************************************************
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.
_________________________________________________________________________________
Friday, April 16, 2010
Question and Answer
It's the 16th so I must ask you to click once more over to Hopeful Parents to read today's post.
See what the question is, see what the answer is here:
Question and Answer
See what the question is, see what the answer is here:
Question and Answer
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