no i in kendall
jess wilson | Monday, August 17, 2009 at 7:50AM
OK, so we've established the fact that I am a crier. We are all in agreement that my emotions come out my eyes - often. Fine, it is what it is. But I am fairly certain that there will be no argument when I say that I am also a talker. I like words - lots of words. I keep them handy - at the tip of my tongue and the edge of my keyboard. I write a lot. I talk a lot. Matt, be nice.
Last Thursday morning, I had no words. None.
Matt called me at work after dropping Kendall off at camp. His voice sounded odd - a little tinny, tight, far away. Not wrong, but not quite right.
"I have to tell you something," he said. There was no sense of foreboding in his words. Thank God this didn't sound like one of THOSE 'I have to tell you somethings'.
He went on. 'When I dropped Kenz off just now," he said, "T came running up to me and handed me a bag. She said, 'I'm not sure that this will fit the script, but I wanted you to have it. Well, really I wanted Kendall to have it. I hope it works.'"
"And with that," he continued, "she handed me a Tasha costume that she MADE for Kendall."
He stopped talking. I knew it was my turn, but I had no words - I had absolutely no idea what to say.
T was the inclusion facilitator at Kendall's summer camp. She split her time between Kendall's camp and two others, overseeing services and ensuring that the kids with special needs had access to every aspect of the camp experience. Her role lasted six weeks. Last week was the last of the six.
I had never met this woman in person. She and I have had some delightful exchanges via e-mail, but that's the extent of it. She has two young children of her own and a very demanding (and logistically taxing) job.
She met Kendall less than a month and a half ago. Yet somehow she was moved to find the time to design and SEW (sew, for God's sake!) a costume for her. From scratch. A costume for which there is no pattern. Because she'd read this. And - previously unbeknownst to me - she'd lived her own version of it with Kendall every time she'd seen her at camp. And she got it. She GOT it.
So I had no words.
I wondered, as I so often do, why it is that my family has been so incredibly blessed. How is it that time after time we find these angels in our lives? How is it that they are air-lifted into our scene like little Backyardigan friends, loving and caring for our kids in ways that go so far beyond what any parent could reasonably hope for?
I don't have to wonder anymore. T provided all the answers in the card that I read later that night - the hand-written love letter that accompanied the incredible gift that she had given to my girl - to us. This is what she had written ...
I can't really explain what has happened between Kendall and me these last six weeks but it has been life changing for me. Never before has a child (other than my own) crept into my heart as quickly and stealthily as your daughter has. I have watched in complete amazement as she works and works to connect with the world.
Beyond the repetition and the grasping attempts to pull from her limited repertoire of conversation starters, there is this aura that is solely Kendall's. It is an invisible exhale, a breath of color, warmth, love, tenderness and song. And then, in the midst of the 'oh yeahs' and missed nuances, the sensory overloads - there are these scintillating seconds when with just the slightest eye contact and a well-rehearsed smile, a tuck of the hair behind the ears, she pours her love around you the best she knows how. It makes my eyes well, my hair stand and my heart sing ...
...I can't explain it really. I just know she has touched my soul ... She is so brave and has kept me honest. I need to come out of my comfort zone more often with even the tiniest amount of the courage that she shows each day.
I sobbed as I read T's note. There it was in my hands, written with so much love, begging one question - How could I ever have been so egotistical?
This has nothing to do with me. My questions presumed that we - Matt, me, Darby- were somehow involved in this. I was asking how we - or really I, if I'm being honest - could be so blessed. This has nothing to do with us or them or me.
This is Kendall. This is what she does. She draws people in; she casts her spell; she ensnares them in a tangle of messy, kinetic, beautiful, perfect Kendall love. She changes them. She changes us all.
T MADE a Tasha costume. A wonderful, fabulous, painstakingly perfect Tasha costume.
I still don't know what to say.
Jess can be found at Diary of a Mom
ed note ~ when I asked T if she would mind if I shared her words, she responded, "You can scream my love for that kiddo from every mountainside."
I am in awe of the power of my daughter and the love of a dedicated educator. Thank you, T for allowing me to share this and thank God for all of the angels like you in my baby's life.
Reader Comments (29)
T and all of the Angels in Kendall's life now and in the years to come will be touched by Kendall because she is an Angel, as well. As her Grammy, I have watched her grow and blossom into herself and we've always agreed, "herself" is as incredible and marvelous as a child can be. Yes, thank you to all the Angels that are now and will be in her life.
Mom
God bless T! That's all I can muster through my tears right now. xo
http://www.cafemom.com/journals/read/1470527/Not_justice_for_my_son_but_change_in_the_law_for_future_disabled_abuse_victims_long
Your daughter is clearly mildly autistic. Pray for the children who are not considered "desirable" to work with. You will never know what some other parents go through. Parents like Kyle impress me the most for their adovcacy is truly stunning.
lynn - indeed she is lightly touched by autism. i often say that we swim at the shallow end of the autism pool.
and you are right - of course i will never know, nor will i ever claim to have any idea what other parents go through, though i do pray for them - and for their children - each and every day.
some time ago, i addressed a similar comment on my blog. rather than repeat what i'd said then, i'll post the link here for anyone who might be interested.
http://jesswilson.wordpress.com/2009/02/23/but/
best, jess
(and thank you for the link. i look forward to reading it.)
http://media.causes.com/480175
Being in the industry I see how children on different ends of the spectrum are treated on a daily basis. So many are treated horribly simply because they are not cute (trust me, young and cute will not last forever), non-verbal, very challenged cognitively, have no ability at any type of social skills...the list goes on. They are illegally restrained and many are abused by none other than their direct 1:1 therapists and what happens most of the time? Nothing. The poor parents of these children are living hell on earth right along with thier children. I really wonder if this girl would have been so loving to a more challenging child. Somehow I doubt it.
Jess, thank you for the wonderful story. As frequent readers of your blog know, you are an advocate for all children on the spectrum.
Lynn, I hear what you are saying and it pains me to think that is true some places. But as a special educator and a speech-language pathologist myself, I want parents to know that it's not the case everywhere, or in my experience even most of the time. There are many professionals who want to be involved in working with children who are nonverbal or have behavioral challenges and the like. Many can see the sweet personalities that these kids have, and appreciate and love them for it.
First, Jess, WOW. Beautiful. I am blown away by Kendall's gift to T (and to us all) and T's gift to Kendall.
Lynn, I'm so very sorry for the horrible thing that happened to your son. Truly, I am shocked and appalled, and my hearts hurts. My daughter fits into the "more challenging" category - nonverbal, aggresive and self-injurious at times. My daughter's teachers, aides and therapists have showered her with love and patience that leaves me speechless. Your son's story makes me all the more grateful for teachers like T.
Lynn, I assumed Kyle was your son - it appears that he is not. Sorry!
Aww Jess, you've made the emotions leak out my eyes again! What wonderful people there are in the world.
And to Lynn: this site is called "Hopeful Parents." To take issue with Jess for posting a hopeful story on Hopeful Parents strikes me as... missing the point quite entirely.
Surely there is room both to rejoice with those who are rejoicing, and to weep with those who mourn?
I am so NOT surprised.
My reaction is that OF COURSE people love Kendall.
She works hard, has a fantastic sense of humor, a sweetness--OF COURSE people adore her.
The autism does not detract from the person she is.
Welll, maybe sometimes it does. For some people. Who aren't looking inside of themselves too much.
What a gift - this person saw your child and not just the autism. And she embraced the autism. She loves the whole package.
And Lynn? It seems to me that there are people out there who love the challenging or "un-cute" kids, too. I've met a whole lot of them.
What a lovely, generous soul T is.
These kids shine a light on other's true spirits. That's their job.
love.
I think Lynn's comment to Jess: "I really wonder if this girl (jess) would have been so loving to a more challenging child. Somehow I doubt it," is actually kind of offensive. Tell me Lynn, where in Jess's words is there any suggestion that her daughter would have received less love if she were ugly/ill behaved/whatever?
In fact, how do you know she is not the pinnacle of ugly/ill behaved/whatever right now?
The fact is, you don't.
While it's deplorable that children are treated badly in some environments, and I agree that the look/behavior/whatever can influence that treatment, I don't think those thoughts have any relevance to this post of Jess's.
Furthermore, if I employed you for any kind of child care - as your posts suggests you are - I would cease to do so immediately upon reading these sentiments of yours.
I'm sorry to seem harsh but if you read my writing you know I've been on the receiving end of that sort of abuse, and I have zero tolerance for sentiments such as expressed here.
Now, if we may return to Jess's original idea . . .
I just went back and read the link that Lynn provided. What a horriffic situation; my heart goes out to Kyle and his parents and I am moved and impressed by their advocacy which now looks like it will help change the laws in Louisiana.
Lynn, my son, while not as severe as Kyle, is certainly far more impaired than many children of people I know. That being said, I know that there are good people and bad people in this world. To paint every caregiver of every severely cognitively disabled person as bad, cruel or uncaring just doesn't make sense. It's akin to saying that because there are some pedophiles/sex offenders/child abusers in the world that equates to everyone being one. Or because there are horrible people in (insert name of profession here), every person in that profession must be the same. Or...that because one autistic person faces XYZ challenges every autistic person faces the same challenges.
Life circumstances don't always allow for each person to be a crusader/advocate to the degree that people such as the late Eunice Shriver or Kyle's mother may be. But it doesn't mean that we don't each try to make our corner of the world a bit better in whatever ways we can. Perhaps this amazing teacher, T, that Jess writes about *has* worked with a child like Kyle and has let him/her touch her heart just as much as Kendall obviously did. The only one who could answer that is T.
Why can't we celebrate and appreciate the ones who DO care and who DO make a difference in the ways they can? We're all pebbles in this giant pond of life and our actions can reach much further than we realize. If we are able to encourage and support carers like T, perhaps we would have more like her and could give all of our children better—no matter where they are in the autism or other disability "pool."
Just my respectful thoughts. Best wishes to you.
To John Elder Robinson-I have never had any respect for you so your words mean little. The fact is some children are treated badly and sadly many of them are the more involved children. There are plenty of testimonials and lawsuits out there detailing that fact. My point was, she is very lucky her child has been fortunate within her educational setting.
John Robinson-And if you read my comment correctly, by 'that girl" I meant her child's therapist not Jess.
in the post that i linked to in my original response to this morning's comments is the following. i think it bears highlighting/ repeating here.
As advocates for people with autism, we ask people to open their hearts to those who are different from themselves. We ask them for compassion and tolerance. I hope that we can interact with one another from that place – a place of tolerance and understanding and above all, respect.
I’d hate to see any of us spend what could be useful and productive energy tearing [each other] down.
Lynn, your pain is palpable. As the mom of a nonverbal, severely challenged little boy, I can relate. I've said it many, many times... The autism we deal with is not warm and fuzzy. We desperately need a cure. But human suffering is not a competitive sport. Really, it's not...
It is a huge understatement to say that we all have different challenges and different agendas and different perspectives... Just enter a room of special needs parents and you'll hear all sorts of conversations. Focusing on those differences and spinning my wheels in a negative place has personally never helped me or my little guy much. Unexpected acts of kindness, like the one referenced in Jess's blog really give me hope.
Jess, my heart sings when I read stories like this one. I hope that the joy you feel over T.'s gift for Kendall has not been diminished by reading the comments.
John R., you are an inspiration to me as a mother of a son on the spectrum, and I am always grateful to have the benefit of your insights.
I can think of no good reason to react to this post in any way other than to thrill at the kindness and love that someone has shown one of "our" kids. To me, the title of this website signifies that it is a place where parents can share joys (or sorrows) freely, without being torn down. A moment of joy experienced by one family takes nothing away from another.
Bravo to T. and Kendall -- and to all the T.'s out there who love and "get" our kids.
Anyone who reads Jess' website regularly will be family with "Lynn". She pops up with petty comments every so often, always changing her name, identity...but she can't quite hide the bitterness. That's more of a signature than any name could ever be.
She always targets Jess, makes the exact same weird, poorly-conceived point every time. "Jess has it easy. Only I...with my never-ending martyr complex...can know what true suffering is".
Zzz.
It would be different if "Lynn" were offering constructive criticism...Jess would be very open to that. But she's clearly resentful, bitter. Doesn't have the courage to stick with the same identity, hides behind various names. Doesn't realize we know exactly who she is.
"Lynn"...little archer...here's my question: there's always someone in a worse situation. Does that mean no one, no one at all, can speak? No one is allowed to tell upbeat stories that convey hope? You have to admit, it's a weird point to be making, sort of irrational.
I can't wait to see what your next identity is. Ummm...Jane? Karen?
I do not have any kids with special needs so I can not say that I know how you feel. However I do know that Jess is a courageous person to open up her heart for all of us to see. I admire each and everyone one of you that face these challenges everyday because I don't think I would have the inner strength to handle the emotional roller coaster. I read Jess' blog because she is an amazing writer and you can just feel her emotions. I am just thankful that you all have each other to lean on.
"My point was, she is very lucky her child has been fortunate within her educational setting."
-Lynn
Lynn, you are absolutely right. We have been extremely fortunate and every day...EVERY DAY...we give thanks and in turn try to find ways to give back. Please know that there is not a day that goes by where I don't pause at least for an extended moment and reflect on our situation and on the stories of other such as Kyle. We count our blessings while our hearts ache...
really wonderful
"Lynn" may or may not be a frustrated blog stalker, but she is addressing (with or without indenting to do so) a problematic issue, that is the breadth of the autism spectrum diagnosis: Kids as different as day and night are crowned with the same label. This is a very strong point of contention within the task force working on DSM-V, the next version of the diagnostic manual. That said, trying to incite an "autism contest" is utterly inane, just like saying that a child who survives cancer did not really have cancer.
I wonder if these teachers have any idea what they mean to us? We've had several who have loved Riley as T loves Kendall. I can cry just thinking about them. The relief they give to parents like us. The faith in people, and in the world, they give us. They are God in action.