Sam and I pick up John every day from camp and every time, Sam runs ahead and opens the door, shouting, "I'm here!" so that John's teachers can all say, "Sam! Hello!"
But today I reached the door first and saw John's beaming face as he jumped up and down. He obviously had been watching the door for some time.
"Hi!" he said, rushing me — a short, skinny linebacker with incredible strength.
"Hi!" I replied, gathering him up for a spin, both delighted and surprised to hear his voice. It was his voice along with the intense beam of his eyes and it took my breath away.
"Mommy's car," he said, pulling me to the door. "Open door? Let's go."
July 29, 2009
July 27, 2009
Camaraderie
It's hard to be a special-needs mom in a typical mom world, it just is. When other moms in my neighborhood get together with their children, the mood is jovial, the cares are few. The kids fly off together exploring rooms, toys, finding things to entertain, their imaginations keyed up like violins. The moms gather in the kitchen like moths to light to swap stories, the minutiae of their days. The conversation is spirited and topical and tinged with neighborhood gossip... did you hear so-and-so did this? no! really?
It is more than that they all seem to speak the same language — which they do, of course. It's that they do so without straining to hear whether one of their children has figured out how to unlock the screen door and is now running up the sidewalk about to dart into the path of a speeding car…
(It does not matter that I've already flitted back and forth "Just to check!" at least 15 times to confirm my worst nightmare only to find him still sitting there with a spray of playing cards around him. I'm certain the next time he will escape.)
No one else has to keep an eye on their still not potty-trained child because he's making some suspicious sounds across the room.
As a consequence, I never fully participate in these play dates — nor do I enjoy them very much — even as I crave them. I am certain that my cheeks blaze with the embarrassment of being THAT mother, the overprotective one, the one who thinks everything is of possible peril to her children.
We are fortunate to live in a neighborhood rich with community. Neighbors know and look out for each other — we are so fortunate. There is an active and caring mom's group, one that provided home-cooked meals to my family for three months after the boys were born. Most everyone knows that my boys are on the autism spectrum. A very few know what that actually means.
This summer has been punctuated by invites to join the neighborhood in pool outings and afternoon play dates and because of our incredibly packed schedule, we have missed most of it. I say that I'm too tired to go and that the boys are exhausted at the end of their long days, but what I'm really feeling is a certain weariness of spirit, the separateness of being the special-needs mom, the isolating feeling that keeps me from the easy banter at the kitchen table. There is this heaviness weighing me down.
Like now, here with these lovely women who just want to be my friends, who try to include us at every turn, who have never once been unkind to my children. How do I shake this weight? The camaraderie of shared experience, that's what I crave and what brings me here again and again — more often to read these days, but increasingly to share. To share and shed some of this fatigue, my spirit fatigue.
And yet here? Now? Watch my spirit visibly lift with the dazzling smile that John flashes me right before rushing into my arms. I feel lighter just listening to him ask for a dvd in his tiny voice: "Yummy, Yummy, Wiggles?" My heart fills and spills over just listening to Sam read about weather and cyclones.
My boys are both my weight and my light, forever linked, teetering for balance. And I think, There it is! The shared experience.
Without a doubt, though, my spirit could use some serious personal attention, some me time, if you will. My blog friends, do you know what I mean?
It is more than that they all seem to speak the same language — which they do, of course. It's that they do so without straining to hear whether one of their children has figured out how to unlock the screen door and is now running up the sidewalk about to dart into the path of a speeding car…
(It does not matter that I've already flitted back and forth "Just to check!" at least 15 times to confirm my worst nightmare only to find him still sitting there with a spray of playing cards around him. I'm certain the next time he will escape.)
No one else has to keep an eye on their still not potty-trained child because he's making some suspicious sounds across the room.
As a consequence, I never fully participate in these play dates — nor do I enjoy them very much — even as I crave them. I am certain that my cheeks blaze with the embarrassment of being THAT mother, the overprotective one, the one who thinks everything is of possible peril to her children.
We are fortunate to live in a neighborhood rich with community. Neighbors know and look out for each other — we are so fortunate. There is an active and caring mom's group, one that provided home-cooked meals to my family for three months after the boys were born. Most everyone knows that my boys are on the autism spectrum. A very few know what that actually means.
This summer has been punctuated by invites to join the neighborhood in pool outings and afternoon play dates and because of our incredibly packed schedule, we have missed most of it. I say that I'm too tired to go and that the boys are exhausted at the end of their long days, but what I'm really feeling is a certain weariness of spirit, the separateness of being the special-needs mom, the isolating feeling that keeps me from the easy banter at the kitchen table. There is this heaviness weighing me down.
Like now, here with these lovely women who just want to be my friends, who try to include us at every turn, who have never once been unkind to my children. How do I shake this weight? The camaraderie of shared experience, that's what I crave and what brings me here again and again — more often to read these days, but increasingly to share. To share and shed some of this fatigue, my spirit fatigue.
And yet here? Now? Watch my spirit visibly lift with the dazzling smile that John flashes me right before rushing into my arms. I feel lighter just listening to him ask for a dvd in his tiny voice: "Yummy, Yummy, Wiggles?" My heart fills and spills over just listening to Sam read about weather and cyclones.
My boys are both my weight and my light, forever linked, teetering for balance. And I think, There it is! The shared experience.
Without a doubt, though, my spirit could use some serious personal attention, some me time, if you will. My blog friends, do you know what I mean?
July 22, 2009
Riding Along
I have spent the summer in my minivan, a vehicle much maligned before I became a suburban mom of two. The ride is quiet, apple juice spills on leather seats clean up quick, and I like sitting up high. My old VW never would have held up to the rigors of this summer.
If it’s a quarter to the next hour, then I am surely on my way for either a pickup or drop-off. Unbelievably, I have no one to blame for this. I filled out camp forms back in February when there was little reason to dwell on the logistics of two boys needing to be in two different places at the same time.
Even if I could think of a zillion different things I’d rather be doing than being a glorified chauffeur, the boys seem to love every minute of it.
*
Sam is going to a speech/social skills camp and clearly has both down pat. The youngest in his group, he is an enthusiastic friend to everyone. On the playground I watch as he calls to the older boys, who are at least 6 or 7, “Hey! Let’s play chase!” and am amazed when they do. He is joyful and persistent, and if met with resistance, he shrugs it off or tries again — the second time successfully.
He has learned taekwando, yoga, baseball, bike riding and soccer. Each week’s theme is a source of wonder to him. Like a sponge, he’s soaking it up and filing it away. During baseball week he begged for cleats and told us about the bases. During yoga, he demonstrated poses and told me one memorable afternoon that I needed to take a deep breath and relax so that I’d feel better. After being unable to navigate the pedals of a tricycle last summer, he is now riding a bike independently.
Last week one of his friends was gone for a few days. Sam came home and said “Where is Montana?” I got a map out and now he has memorized most of the United States. I think to myself, Is there a way to bottle this? This ability? This joy?
*
John goes to ESY in the morning and to a terrific camp in the afternoon. They go swimming every day and run around the playground. Structure? Not so much, it’s more about fun. John loves, loves, loves the water and being in it elicits unexpected words and laughter.
Sometimes it has to be just about the laughter, you know?
After our IEP meeting, I made an appointment with a renowned institute’s assistive technology clinic. I just felt that if there was a way to help John communicate more effectively, that we had to find it and give it to him. So last week we headed there and met with their director and speech pathologist. She watched him and tried to engage him with a wall of PECS. “I see a tree,” she said, pulling off a picture of a tree. John followed her and replied, “I see a ball,” and pulled off a picture of a ball. They went back and forth like this for a bit. At one point he tired and said to me, “Mommy’s car.” The speech pathologist said the most amazing words to me afterwards: “He is very verbal.”
Very verbal.
Of course I started to cry. She said that clearly he is very delayed with speech, but that he is pronouncing properly, adding on things like ‘s and not dropping syllables. She said that while a high-tech device wouldn’t be the right thing for him, she would customize a Flip ‘n Talk to augment his communication.
And I think, Can we bottle this? My relief? This joy?
If it’s a quarter to the next hour, then I am surely on my way for either a pickup or drop-off. Unbelievably, I have no one to blame for this. I filled out camp forms back in February when there was little reason to dwell on the logistics of two boys needing to be in two different places at the same time.
Even if I could think of a zillion different things I’d rather be doing than being a glorified chauffeur, the boys seem to love every minute of it.
*
Sam is going to a speech/social skills camp and clearly has both down pat. The youngest in his group, he is an enthusiastic friend to everyone. On the playground I watch as he calls to the older boys, who are at least 6 or 7, “Hey! Let’s play chase!” and am amazed when they do. He is joyful and persistent, and if met with resistance, he shrugs it off or tries again — the second time successfully.
He has learned taekwando, yoga, baseball, bike riding and soccer. Each week’s theme is a source of wonder to him. Like a sponge, he’s soaking it up and filing it away. During baseball week he begged for cleats and told us about the bases. During yoga, he demonstrated poses and told me one memorable afternoon that I needed to take a deep breath and relax so that I’d feel better. After being unable to navigate the pedals of a tricycle last summer, he is now riding a bike independently.
Last week one of his friends was gone for a few days. Sam came home and said “Where is Montana?” I got a map out and now he has memorized most of the United States. I think to myself, Is there a way to bottle this? This ability? This joy?
*
John goes to ESY in the morning and to a terrific camp in the afternoon. They go swimming every day and run around the playground. Structure? Not so much, it’s more about fun. John loves, loves, loves the water and being in it elicits unexpected words and laughter.
Sometimes it has to be just about the laughter, you know?
After our IEP meeting, I made an appointment with a renowned institute’s assistive technology clinic. I just felt that if there was a way to help John communicate more effectively, that we had to find it and give it to him. So last week we headed there and met with their director and speech pathologist. She watched him and tried to engage him with a wall of PECS. “I see a tree,” she said, pulling off a picture of a tree. John followed her and replied, “I see a ball,” and pulled off a picture of a ball. They went back and forth like this for a bit. At one point he tired and said to me, “Mommy’s car.” The speech pathologist said the most amazing words to me afterwards: “He is very verbal.”
Very verbal.
Of course I started to cry. She said that clearly he is very delayed with speech, but that he is pronouncing properly, adding on things like ‘s and not dropping syllables. She said that while a high-tech device wouldn’t be the right thing for him, she would customize a Flip ‘n Talk to augment his communication.
And I think, Can we bottle this? My relief? This joy?
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