A couple of wonderful autism-related stories were featured in the news this final week of Autism Awareness Month.
Lisa Goring, Director of Family Services for Autism Speaks, appeared on CBS News to discuss the 100 Day Kit that is now available to newly diagnosed families. The kit is meant to serve as a roadmap to families the first few months of diagnosis. As Lisa says in the interview, every child is different and every family is different. Some families will follow this roadmap word for word; others will follow a different timetable. The most important part is that they will have some extremely helpful information created by loving parents and caring professionals to get them started on the journey. I encourage you to watch the interview and help spread the word about this phenomenal resource.
Robin Morris, author of the Resilient Mom Blog over at Revolution Health, is a bit further down the road in the journey. In "A Path into the World" which recently ran in the Philadelphia Inquirer she writes:
Time provides a unique perspective in separating the forest from the trees. Sometimes, when we live in a world of chaos, we are totally immersed in the now, rather than the look where we've been...
A nice way to end another April .… just a little bit more aware of the possibilities
Wednesday, April 30, 2008
Monday, April 28, 2008
Autism: Riding With No Hands
All you gotta do
Is smile that smile
And there go all my defenses
Just leave it up to you
And in a little while
You’re messin’ up my mind
And fillin’ up my senses
~Dolly
If you had spoken to me last Tuesday, late in the afternoon, you would have had one bummer of a conversation.
My agenda was to spend the day at home in post-marathon recovery mode. Unfortunately, my feeble attempts to keep Jack simultaneously entertained fell flat. He had no interest in any of his toys. I took him outside to the swing set and he promptly headed back in. Literally all he wanted to do was look in the mirror at himself and stand by the pantry foraging for snack items.
Over and over and over. All the live-long day.
Doesn’t sound so bad until you do it for eight hours straight.
I felt like a failure, the ultimate Debbie Downer. I couldn’t engage my own son for one single day. How was I going to do it for an entire week? Old friends, inadequacy and guilt, rushed in and made themselves comfortable in my heavy, hopeless heart.
But, as John Lennon once said, life is what happens to you while you're busy making other plans….
Wednesday when I got up, my tired bones creaked a little less. I felt a new sense of determination to connect with this kid.
Spring break would not break me.
So we went to the park, where we ran and screamed and spun and stimmed. It was wonderful to see Jack in a natural setting with his peers, being his own little quirky self, and having a total blast. People stared but I didn’t care. I couldn’t have been prouder of my own little, living, breathing dose of autism awareness.
We went to Andy’s office, filled with cubicles and strangers, and had lunch. Jack softly whispered “Hi” to Andy’s coworkers and occasionally flashed a dimple. Hearts were melting all over CVS corporate headquarters.
We ventured out to McDonald's on more than one occasion with great success. We attended a spring break music event put on by the Autism Alliance of Metrowest at our local library. At first Jack protested when we entered the room, noisy with other crazy, autistic kids and their caregivers. But once the music started, he totally jammed, even marching in the autism music parade, proudly flicking his tambourine back and forth.
After the jam session, we headed over to Amy’s drama camp to attend her performance as Merchant Number Two in The Brave Little Tailor. I just knew that I would have to abandon her mid-performance since I had Jack in tow. I warned her about the possibility, telling her that I wouldn’t want to ruin everyone else’s experience just so I could be there. She nodded in understanding, but I still fretted about the thought of her, scanning the audience and seeing no one there to cheer her on.
Turns out Jack was actually happy to be there. He protested when I attempted to slide into a row of seats, but when I stood in the back, he stood happily next to me, his warm, little hand in mine. He looked at the lights. He looked at the children on stage. He spotted Amy. He looked at me.
He smiled.
For the entire performance.
With those successes in my hip-pocket, I felt confident going into the weekend facing the daunting task of potty-training.
Saturday was messy. We hit the bathroom every fifteen minutes, wearing big boy underwear the entire time. Jack had one accident after another, but did have success three times. Hugs and Skittles were heaped on our little overachiever.
Round two on Sunday was nothing short of miraculous. In keeping with the theme of constantly keeping me guessing, Jack kept his underwear dry all day. Not a single accident. We rejoiced in the possibility that he might be actually getting the hang of this whole bathroom thing.
Dare I hope…
So today, this rainy Monday, it was back to the groove of life. I felt a twinge of sadness when I waved goodbye to my little guy, carrying his lunchbox, wearing his big boy underwear to school.
Can’t help but wonder what he’s got up his sleeve next...
Is smile that smile
And there go all my defenses
Just leave it up to you
And in a little while
You’re messin’ up my mind
And fillin’ up my senses
~Dolly
If you had spoken to me last Tuesday, late in the afternoon, you would have had one bummer of a conversation.
My agenda was to spend the day at home in post-marathon recovery mode. Unfortunately, my feeble attempts to keep Jack simultaneously entertained fell flat. He had no interest in any of his toys. I took him outside to the swing set and he promptly headed back in. Literally all he wanted to do was look in the mirror at himself and stand by the pantry foraging for snack items.
Over and over and over. All the live-long day.
Doesn’t sound so bad until you do it for eight hours straight.
I felt like a failure, the ultimate Debbie Downer. I couldn’t engage my own son for one single day. How was I going to do it for an entire week? Old friends, inadequacy and guilt, rushed in and made themselves comfortable in my heavy, hopeless heart.
But, as John Lennon once said, life is what happens to you while you're busy making other plans….
Wednesday when I got up, my tired bones creaked a little less. I felt a new sense of determination to connect with this kid.
Spring break would not break me.
So we went to the park, where we ran and screamed and spun and stimmed. It was wonderful to see Jack in a natural setting with his peers, being his own little quirky self, and having a total blast. People stared but I didn’t care. I couldn’t have been prouder of my own little, living, breathing dose of autism awareness.
We went to Andy’s office, filled with cubicles and strangers, and had lunch. Jack softly whispered “Hi” to Andy’s coworkers and occasionally flashed a dimple. Hearts were melting all over CVS corporate headquarters.
We ventured out to McDonald's on more than one occasion with great success. We attended a spring break music event put on by the Autism Alliance of Metrowest at our local library. At first Jack protested when we entered the room, noisy with other crazy, autistic kids and their caregivers. But once the music started, he totally jammed, even marching in the autism music parade, proudly flicking his tambourine back and forth.
After the jam session, we headed over to Amy’s drama camp to attend her performance as Merchant Number Two in The Brave Little Tailor. I just knew that I would have to abandon her mid-performance since I had Jack in tow. I warned her about the possibility, telling her that I wouldn’t want to ruin everyone else’s experience just so I could be there. She nodded in understanding, but I still fretted about the thought of her, scanning the audience and seeing no one there to cheer her on.
Turns out Jack was actually happy to be there. He protested when I attempted to slide into a row of seats, but when I stood in the back, he stood happily next to me, his warm, little hand in mine. He looked at the lights. He looked at the children on stage. He spotted Amy. He looked at me.
He smiled.
For the entire performance.
With those successes in my hip-pocket, I felt confident going into the weekend facing the daunting task of potty-training.
Saturday was messy. We hit the bathroom every fifteen minutes, wearing big boy underwear the entire time. Jack had one accident after another, but did have success three times. Hugs and Skittles were heaped on our little overachiever.
Round two on Sunday was nothing short of miraculous. In keeping with the theme of constantly keeping me guessing, Jack kept his underwear dry all day. Not a single accident. We rejoiced in the possibility that he might be actually getting the hang of this whole bathroom thing.
Dare I hope…
So today, this rainy Monday, it was back to the groove of life. I felt a twinge of sadness when I waved goodbye to my little guy, carrying his lunchbox, wearing his big boy underwear to school.
Can’t help but wonder what he’s got up his sleeve next...
Sunday, April 27, 2008
Autism Research Town Hall Meeting this Saturday
The following press release came from University of California Newsroom:
Autism Research Town Hall Meeting
SACRAMENTO -- Parents and caregivers of children, teens and adults with autism spectrum disorders are among those invited to participate in a daylong town hall meeting on May 3, from 10 a.m. to 5 p.m. at UC Davis Cancer Center, 4501 "X" St., Sacramento, to discuss priorities for current and future autism research. The town hall meeting is sponsored by the Interagency Autism Coordinating Committee, the federal advisory committee that coordinates autism spectrum disorders activities nationwide as mandated by the Combating Autism Act of 2006.
"What we are looking for is input from parents into what should be the priorities for research into treatments for autism. While there are many different treatments that are being tried, the solid data in well-controlled clinical trials are not always there to support those therapies," said Cindy Lawler, a representative of the IACC.
The meeting is the first of its kind conducted by the Interagency Autism Coordinating Committee, and follows a Request for Information for public input issued in December 2007 as the committee began to develop a strategic plan for ASD research. The committee is composed of several different Department of Health and Human Services agencies including the National Institutes of Health, Centers for Disease Control and Prevention, the Centers for Medicare and Medicaid Services, and the Department of Education.
Lawler, who works in the National Institutes of Environmental Health Sciences of the National Institutes of Health, said the first of its kind meeting is being held in Sacramento because UC Davis "is a hotbed of environmental health sciences research" with a "critical mass of researchers" exploring autism therapies.
"At UC Davis we have a very strong commitment to research into autism's causes and treatments," said Isaac Pessah, professor, Department of Molecular Biosciences in the College of Veterinary Medicine and director of the UC Davis Children's Center for Environmental Health and Disease Prevention. "This town hall is essential in engaging public input into the IACC strategic plan and it gives stakeholders and caregivers a chance to guide the NIH toward identifying critical areas where funding is needed for autism research."
The town hall meeting will be divided into two parts. The morning session will explore interventions for young children. The afternoon session will examine interventions for adolescents and adults with autism spectrum disorders. The public will be invited to comment after each panel discussion.
The morning's panelists will include Sally Rogers, a professor of psychiatry and behavioral sciences, and a UC Davis M.I.N.D. Institute researcher whose work focuses on effective intensive intervention for toddlers with autism; and internationally known fragile X researcher Randi Hagerman, medical director at the M.I.N.D. Institute and professor, endowed chair in fragile X research, at the UC Davis School of Medicine.
Each panel will include one public IACC representative. Lyn Redwood will sit on the morning panel. She is the co-founder of the Coalition for Safe Minds, a private nonprofit organization founded to investigate and raise awareness of the risks to infants and children of exposure to mercury from medical products, including thimerosal in vaccines. Neurologist Michael Chez, who specializes in childhood autism and is an expert in the medical management of children with autism spectrum disorders, will moderate the morning panel.
Lawler said that, to date, autism treatment research has been focused primarily on young children, with little attention directed at treatment and interventions for older children, adolescents and adults with autism spectrum disorders. The Interagency Autism Coordinating Committee is seeking community input on research priorities and strategies to develop a stronger evidence base for interventions that are appropriate across the lifespan of individuals with autism.
The IACC representative on the afternoon panel will be Lee Grossman, president and chief executive officer of the Autism Society of America. Other panelists will include Pilar Bernal, founder and director of the Autism Spectrum Disorders Center of Kaiser Permanente of Northern California, and Dena Gassner, an autism "self advocate" who describes herself as a second generation member of three generations of people with autism.
Lawler said the research priorities identified in these areas will help to answer many key questions that confront families affected by autism, such as: When should I be concerned about my child's development? How can I understand what is happening to my child? What caused this to happen and how can we prevent it? Where can I turn for services? What does the future hold?
"Families are affected by autism every day," Lawler said. "They need ways to help their family members sooner rather than later."
The meeting will be free and open to the public. Advance registration is not required. The auditorium will seat up to 250 people. Event parking will be available in Visitor Lot 4 adjacent to the Cancer Center. For further information, please contact Rebecca Morrison, at (530) 754-8157, or Melissa Rose, at (916) 703-0219.
The UC Davis M.I.N.D. Institute in Sacramento was founded in 1998 as a unique interdisciplinary research center where parents, community leaders, researchers, clinicians and volunteers collaborate to study and treat autism and other neurodevelopmental disorders. More information about the institute is available on the Web at http://www.ucdmc.ucdavis.edu/mindinstitute.
Autism Research Town Hall Meeting
SACRAMENTO -- Parents and caregivers of children, teens and adults with autism spectrum disorders are among those invited to participate in a daylong town hall meeting on May 3, from 10 a.m. to 5 p.m. at UC Davis Cancer Center, 4501 "X" St., Sacramento, to discuss priorities for current and future autism research. The town hall meeting is sponsored by the Interagency Autism Coordinating Committee, the federal advisory committee that coordinates autism spectrum disorders activities nationwide as mandated by the Combating Autism Act of 2006.
"What we are looking for is input from parents into what should be the priorities for research into treatments for autism. While there are many different treatments that are being tried, the solid data in well-controlled clinical trials are not always there to support those therapies," said Cindy Lawler, a representative of the IACC.
The meeting is the first of its kind conducted by the Interagency Autism Coordinating Committee, and follows a Request for Information for public input issued in December 2007 as the committee began to develop a strategic plan for ASD research. The committee is composed of several different Department of Health and Human Services agencies including the National Institutes of Health, Centers for Disease Control and Prevention, the Centers for Medicare and Medicaid Services, and the Department of Education.
Lawler, who works in the National Institutes of Environmental Health Sciences of the National Institutes of Health, said the first of its kind meeting is being held in Sacramento because UC Davis "is a hotbed of environmental health sciences research" with a "critical mass of researchers" exploring autism therapies.
"At UC Davis we have a very strong commitment to research into autism's causes and treatments," said Isaac Pessah, professor, Department of Molecular Biosciences in the College of Veterinary Medicine and director of the UC Davis Children's Center for Environmental Health and Disease Prevention. "This town hall is essential in engaging public input into the IACC strategic plan and it gives stakeholders and caregivers a chance to guide the NIH toward identifying critical areas where funding is needed for autism research."
The town hall meeting will be divided into two parts. The morning session will explore interventions for young children. The afternoon session will examine interventions for adolescents and adults with autism spectrum disorders. The public will be invited to comment after each panel discussion.
The morning's panelists will include Sally Rogers, a professor of psychiatry and behavioral sciences, and a UC Davis M.I.N.D. Institute researcher whose work focuses on effective intensive intervention for toddlers with autism; and internationally known fragile X researcher Randi Hagerman, medical director at the M.I.N.D. Institute and professor, endowed chair in fragile X research, at the UC Davis School of Medicine.
Each panel will include one public IACC representative. Lyn Redwood will sit on the morning panel. She is the co-founder of the Coalition for Safe Minds, a private nonprofit organization founded to investigate and raise awareness of the risks to infants and children of exposure to mercury from medical products, including thimerosal in vaccines. Neurologist Michael Chez, who specializes in childhood autism and is an expert in the medical management of children with autism spectrum disorders, will moderate the morning panel.
Lawler said that, to date, autism treatment research has been focused primarily on young children, with little attention directed at treatment and interventions for older children, adolescents and adults with autism spectrum disorders. The Interagency Autism Coordinating Committee is seeking community input on research priorities and strategies to develop a stronger evidence base for interventions that are appropriate across the lifespan of individuals with autism.
The IACC representative on the afternoon panel will be Lee Grossman, president and chief executive officer of the Autism Society of America. Other panelists will include Pilar Bernal, founder and director of the Autism Spectrum Disorders Center of Kaiser Permanente of Northern California, and Dena Gassner, an autism "self advocate" who describes herself as a second generation member of three generations of people with autism.
Lawler said the research priorities identified in these areas will help to answer many key questions that confront families affected by autism, such as: When should I be concerned about my child's development? How can I understand what is happening to my child? What caused this to happen and how can we prevent it? Where can I turn for services? What does the future hold?
"Families are affected by autism every day," Lawler said. "They need ways to help their family members sooner rather than later."
The meeting will be free and open to the public. Advance registration is not required. The auditorium will seat up to 250 people. Event parking will be available in Visitor Lot 4 adjacent to the Cancer Center. For further information, please contact Rebecca Morrison, at (530) 754-8157, or Melissa Rose, at (916) 703-0219.
The UC Davis M.I.N.D. Institute in Sacramento was founded in 1998 as a unique interdisciplinary research center where parents, community leaders, researchers, clinicians and volunteers collaborate to study and treat autism and other neurodevelopmental disorders. More information about the institute is available on the Web at http://www.ucdmc.ucdavis.edu/mindinstitute.
Friday, April 25, 2008
Autism: Spring Break Breakdown
I had one of those moments this week. You know the kind where your stomach drops to the tips of your toes.
Mommy horror.
Jack and I had just dropped Amy off at drama camp and were headed to the park for a mega dose of sunshine and fresh air. (The weather in New England this week has been absolutely spectacular. Spring has sprung and I am officially in love with Boston.)
Unfortunately for us, the beautiful weather also meant that the pothole fillers were out in force and traffic was crrraaawwllling. As we idled in the gridlock, Jack started to cry.
When I turned to see what the problem was, I spotted the golden arches out of the corner of my sunglasses. Immediately the light bulb went off.
“Jack, do you want to go to McDonalds?”
His crying escalated. I wasn’t sure what the translation was. Affirmative or negative? I decided to go for it and wheeled into the parking lot.
Like magic, the switch flipped and the crying ceased. I was so very proud of myself. He had communicated a desire and I had figured it out. We connected. Success!
The parking lot daffodils beamed and Jack beamed right back. As I pushed open the double glass doors, heading inside, I smiled to myself. Happy Jack jumped in excitement, back and forth across the terra-cotta tiles. Fortunately for us, one of Jack’s current food faves is the McDonald’s Mighty Kid’s Meal. His diet is extremely self-restricted, but lately, thanks to a great deal of feeding therapy, he rarely turns down a nugget. Again, I felt a sense of sweet satisfaction. I knew exactly what he wanted and was going to get it for him.
The woman behind the counter vacantly looked at me. “I’ll take a Mighty Kids Meal with nuggets and fries, please.” I said. I really must get him to try more healthful things I thought to myself… But hey, at least it’s caloric intake. Some protein. I’ll take it…
“We’re not serving lunch yet.” McDonald’s Lady flatly replied.
The needle cruelly scratched across the turntable of our glorious morning.
What?
I looked down at my little guy, jumping up and down in excitement. I looked back at McDonald's Lady. “Are you sure?” I asked, the desperation expanding in my throat. “What do you have for kids?”
“We don’t have kid’s meals for breakfast.”
My mind raced. My heart pounded.
Fasten your seat belts, I thought to myself. McDonald’s Lady has no concept of the chain of events that has just been triggered… A chain that will affect every patron currently enjoying their hash browns and coffee in peace.
I ordered a fruit and yogurt parfait in resignation and headed to a corner table. As I pulled it out of the bag, I braced for the worst. Happy Jack’s face dropped. I explained to him, “No nuggets, Jack. They don’t have any nuggets today.” I repeated the phrase, simply, clearly, trying to make sure he understood.
He didn’t care. He was furious. He cried.
And cried. And screamed. And cried. And screamed.
People stared. His face turned purple. Snot flowed.
I waited.
I’ve learned over the years that when the meltdown occurs, there is no sense in intervening. The only way over is through.
After a few, excruciating minutes, the volume decreased. The tension in my shoulders lessened. Jack’s anger faded into sadness.
Bitterness.
The untouched parfait sat on the table in front of us. CNN hummed on the flat screen mounted on the wall. People redirected their stares to the television. The bratty kid had finally been brought under control by his inadequate mother.
No nuggets. No fair.
I asked Sad Jack if he was ready to go to the park
“No” he adamantly growled. (“No” is one of his handful of words. Others include “up” and “go.” "No" is definitely the most utilized.)
So we sat. Quietly. Sadly. Grieving over what might have been.
“Are you ready to go now?” I asked a few minutes later.
“No.”
The scene rewound and replayed for the next forty-five minutes. I checked my watch. If we sat here for another half hour, we could get the elusive nuggets. Would he make it that long? And what about the park? I glanced at the fuzzy screen. Clinton had won Pennsylvania. Rice was in short supply.
Never underestimate the determination of a four year-old kid who wants his Mighty Kid’s Meal.
At 10:30 we strolled back to the counter. Happy Jack smiled a smile of sweet victory as McDonald’s Lady slid the tray toward him.
Patience is a virtue. Persistence gets the job done.
Mighty Kid indeed.
Mommy horror.
Jack and I had just dropped Amy off at drama camp and were headed to the park for a mega dose of sunshine and fresh air. (The weather in New England this week has been absolutely spectacular. Spring has sprung and I am officially in love with Boston.)
Unfortunately for us, the beautiful weather also meant that the pothole fillers were out in force and traffic was crrraaawwllling. As we idled in the gridlock, Jack started to cry.
When I turned to see what the problem was, I spotted the golden arches out of the corner of my sunglasses. Immediately the light bulb went off.
“Jack, do you want to go to McDonalds?”
His crying escalated. I wasn’t sure what the translation was. Affirmative or negative? I decided to go for it and wheeled into the parking lot.
Like magic, the switch flipped and the crying ceased. I was so very proud of myself. He had communicated a desire and I had figured it out. We connected. Success!
The parking lot daffodils beamed and Jack beamed right back. As I pushed open the double glass doors, heading inside, I smiled to myself. Happy Jack jumped in excitement, back and forth across the terra-cotta tiles. Fortunately for us, one of Jack’s current food faves is the McDonald’s Mighty Kid’s Meal. His diet is extremely self-restricted, but lately, thanks to a great deal of feeding therapy, he rarely turns down a nugget. Again, I felt a sense of sweet satisfaction. I knew exactly what he wanted and was going to get it for him.
The woman behind the counter vacantly looked at me. “I’ll take a Mighty Kids Meal with nuggets and fries, please.” I said. I really must get him to try more healthful things I thought to myself… But hey, at least it’s caloric intake. Some protein. I’ll take it…
“We’re not serving lunch yet.” McDonald’s Lady flatly replied.
The needle cruelly scratched across the turntable of our glorious morning.
What?
I looked down at my little guy, jumping up and down in excitement. I looked back at McDonald's Lady. “Are you sure?” I asked, the desperation expanding in my throat. “What do you have for kids?”
“We don’t have kid’s meals for breakfast.”
My mind raced. My heart pounded.
Fasten your seat belts, I thought to myself. McDonald’s Lady has no concept of the chain of events that has just been triggered… A chain that will affect every patron currently enjoying their hash browns and coffee in peace.
I ordered a fruit and yogurt parfait in resignation and headed to a corner table. As I pulled it out of the bag, I braced for the worst. Happy Jack’s face dropped. I explained to him, “No nuggets, Jack. They don’t have any nuggets today.” I repeated the phrase, simply, clearly, trying to make sure he understood.
He didn’t care. He was furious. He cried.
And cried. And screamed. And cried. And screamed.
People stared. His face turned purple. Snot flowed.
I waited.
I’ve learned over the years that when the meltdown occurs, there is no sense in intervening. The only way over is through.
After a few, excruciating minutes, the volume decreased. The tension in my shoulders lessened. Jack’s anger faded into sadness.
Bitterness.
The untouched parfait sat on the table in front of us. CNN hummed on the flat screen mounted on the wall. People redirected their stares to the television. The bratty kid had finally been brought under control by his inadequate mother.
No nuggets. No fair.
I asked Sad Jack if he was ready to go to the park
“No” he adamantly growled. (“No” is one of his handful of words. Others include “up” and “go.” "No" is definitely the most utilized.)
So we sat. Quietly. Sadly. Grieving over what might have been.
“Are you ready to go now?” I asked a few minutes later.
“No.”
The scene rewound and replayed for the next forty-five minutes. I checked my watch. If we sat here for another half hour, we could get the elusive nuggets. Would he make it that long? And what about the park? I glanced at the fuzzy screen. Clinton had won Pennsylvania. Rice was in short supply.
Never underestimate the determination of a four year-old kid who wants his Mighty Kid’s Meal.
At 10:30 we strolled back to the counter. Happy Jack smiled a smile of sweet victory as McDonald’s Lady slid the tray toward him.
Patience is a virtue. Persistence gets the job done.
Mighty Kid indeed.
Tuesday, April 22, 2008
Autism: Marathon Monday
So I knew it would happen.
The ugly cry.
It was inevitable.
Mile 21, just after Boston’s infamous Heartbreak Hill was where it hit. It was at that point I knew.
I knew I was going to make it.
I felt strong. I’d covered the toughest part of the course. The hills were behind me.
The hills of Newton, known to chew runners up and spit them out.
Not this girl.
Not today.
Back of the pack. Didn’t matter.
I was going to finish the Boston Marathon.
The tears flowed. The Boston College students, beer cans and signs in hand, cheered and high-fived. I started to hyperventilate … or cryperventilate as Andy later teased.
Breathe, Jude, breathe …
I thought about my boy. Our family. The hills we climb. Will we ever get to mile 21? Will we ever cry the tears of relief? Experience the elusive happy ending.
One foot in front of the other. Destination unknown. Breathing. Crying. Living. Loving.
Stronger than we ever realized. We’ll make it.
At our own pace.
But we’ll make it.
The ugly cry.
It was inevitable.
Mile 21, just after Boston’s infamous Heartbreak Hill was where it hit. It was at that point I knew.
I knew I was going to make it.
I felt strong. I’d covered the toughest part of the course. The hills were behind me.
The hills of Newton, known to chew runners up and spit them out.
Not this girl.
Not today.
Back of the pack. Didn’t matter.
I was going to finish the Boston Marathon.
The tears flowed. The Boston College students, beer cans and signs in hand, cheered and high-fived. I started to hyperventilate … or cryperventilate as Andy later teased.
Breathe, Jude, breathe …
I thought about my boy. Our family. The hills we climb. Will we ever get to mile 21? Will we ever cry the tears of relief? Experience the elusive happy ending.
One foot in front of the other. Destination unknown. Breathing. Crying. Living. Loving.
Stronger than we ever realized. We’ll make it.
At our own pace.
But we’ll make it.
Sunday, April 20, 2008
Autism: The Extreme To Do List
Sometimes I lie awake, night after night
Coming apart at the seams
Eager to please, ready to fight
Why do I go to extremes?
~Billy Joel
The kids are out of school all week on April break. Amy's going to drama camp. Jack's hanging with Mom. Since I’m a visual thinker, I’ve created the following picture schedule to keep me on task:
Monday
Note to self: Don't forget the Sharpie. Write the names of the students of Jack's school on your bod. J-A-C-K goes right over your heart. Refer to as needed for inspiration.
Tuesday
Tuesday
Note to self: Deep breaths. Slow, purposeful movements. Attempt to keep Jack engaged without throwing up.
Wednesday/Thursday/Friday
Wednesday/Thursday/Friday
Tuesday, April 15, 2008
Autism: A Surprise in the Mail
I’m standing at the counter of our post office, a pile of tax forms and payments in front of me.
U.S. Treasury …. P.O. Box Blah, Blah, Blah
I fill out the envelopes and the certified mail forms. Andy had given me a pained expression this morning when he handed them over.
Two CPA’s. Always filing extensions. Always owing money. What a love story.
The glass door swings open and in walks Suburban Mom Number Two. Hurry, I think to myself. Don’t want her to get in line in front of me. I’ll be late to pick up Jack.
I write faster. Division of Taxation. One Capitol Hill. Blah, blah, blah…
The glass door swings open again. In walks Suburban Mom Number Three. Damn, I think to myself. Why does so much business have to transpire between 2:00 and 2:45? Why are there so many procrastinators like me, trying to get it done before the school bell rings?
I scribble faster.
As luck would have it, Suburban Moms Two and Three know each other. Suburban Mom banter ensues. Husbands are fine. Kids are so, so, so busy. Boys, all boys they’re talking about. Something about sports. Every single day of the week. Not a moment to breathe. Camps. College apps.
They’re so, so, so busy.
Sigh.
And there it is. That damn knife. I’ve felt it twist into my heart a thousand times. I flinch and brace for the pain.
Jack. That should be Jack. What happened? Why him? What the hell happened?
I scribble on and prepare for the familiar sting of tears.
But the sting never hits.
I stand up straighter and seal envelopes. First federal. Then state.
It occurs to me that I must be getting better at this. A year ago a moment like this could have knocked me to my knees.
Not today. Suburban Mom Number One is getting stronger. I never thought I would. Couldn’t visualize it.
But somehow, I am.
I smile at Suburban Moms Two and Three and stroll past them to get in line. I look at the clock. I’ll just make it. Just in time to pick up my beautiful, beautiful boy.
U.S. Treasury …. P.O. Box Blah, Blah, Blah
I fill out the envelopes and the certified mail forms. Andy had given me a pained expression this morning when he handed them over.
Two CPA’s. Always filing extensions. Always owing money. What a love story.
The glass door swings open and in walks Suburban Mom Number Two. Hurry, I think to myself. Don’t want her to get in line in front of me. I’ll be late to pick up Jack.
I write faster. Division of Taxation. One Capitol Hill. Blah, blah, blah…
The glass door swings open again. In walks Suburban Mom Number Three. Damn, I think to myself. Why does so much business have to transpire between 2:00 and 2:45? Why are there so many procrastinators like me, trying to get it done before the school bell rings?
I scribble faster.
As luck would have it, Suburban Moms Two and Three know each other. Suburban Mom banter ensues. Husbands are fine. Kids are so, so, so busy. Boys, all boys they’re talking about. Something about sports. Every single day of the week. Not a moment to breathe. Camps. College apps.
They’re so, so, so busy.
Sigh.
And there it is. That damn knife. I’ve felt it twist into my heart a thousand times. I flinch and brace for the pain.
Jack. That should be Jack. What happened? Why him? What the hell happened?
I scribble on and prepare for the familiar sting of tears.
But the sting never hits.
I stand up straighter and seal envelopes. First federal. Then state.
It occurs to me that I must be getting better at this. A year ago a moment like this could have knocked me to my knees.
Not today. Suburban Mom Number One is getting stronger. I never thought I would. Couldn’t visualize it.
But somehow, I am.
I smile at Suburban Moms Two and Three and stroll past them to get in line. I look at the clock. I’ll just make it. Just in time to pick up my beautiful, beautiful boy.
Sunday, April 13, 2008
Autism: Setting the Pace for Autism Research
The Interagency Autism Coordinating Committee will have a strategic planning meeting on Monday, April 21st. You can participate via the web or conference call. Please see the details below.
Unfortunately I'll be otherwise engaged that Monday, running the Boston Marathon for Jack's school, Nashoba Learning Group. If possible, I hope you'll take time to participate in the meeting. The IACC is charged with steering the direction of autism research funded by the Comabating Autism Act for the next five years. We need to audit them every step of the way.
******
IACC Strategic Planning Workgroup Meeting Announcement There will be a meeting of the Strategic Planning Workgroup formed by the Interagency Autism Coordinating Committee (IACC) on Monday, April 21st from 11 am to 6 pm EST. Workgroup members will review current funding for autism spectrum disorder (ASD) research, proposed research initiatives and resources. They will then discuss and make recommendations on prioritization of research initiatives for the IACC strategic plan for ASD research. The workgroup meeting will be open to the public through a conference call phone number and a web presentation tool on the Internet. Members of the public who participate using the conference call phone number will be able to listen to the meeting but will not be heard. There may be an opportunity for members of the public to submit written comments during the workgroup meeting through the web presentation tool. Submitted comments will be reviewed after the meeting.
Individuals who plan to use these electronic services and need special assistance, such as captioning of the conference call or other reasonable accommodations, should submit a request at least seven days prior to the meeting to Tanya Pryor.
Tanya Pryor
Interagency Autism Coordinating Committee
National Institute of Mental Health,
NIH6001 Executive Boulevard, Room 6187,
MSC 9669
Rockville, MD 20892-9669
Phone: 301-443-7153
Fax: 301-480-4415
pryort@mail.nih.gov
To register for the meeting, please go to the link below:
https://www1.gotomeeting.com/register/630812808
The conference call phone number is (641) 715-3222, access code 693-119-101.
If you experience any technical problems with the conference call phone number or web presentation tool, please contact GoToMeeting at 888-259-8414.
For more information on the IACC, please see the link below:
http://www.nimh.nih.gov/research-funding/scientific-meetings/recurring-meetings/iacc/index.shtml
Unfortunately I'll be otherwise engaged that Monday, running the Boston Marathon for Jack's school, Nashoba Learning Group. If possible, I hope you'll take time to participate in the meeting. The IACC is charged with steering the direction of autism research funded by the Comabating Autism Act for the next five years. We need to audit them every step of the way.
******
IACC Strategic Planning Workgroup Meeting Announcement There will be a meeting of the Strategic Planning Workgroup formed by the Interagency Autism Coordinating Committee (IACC) on Monday, April 21st from 11 am to 6 pm EST. Workgroup members will review current funding for autism spectrum disorder (ASD) research, proposed research initiatives and resources. They will then discuss and make recommendations on prioritization of research initiatives for the IACC strategic plan for ASD research. The workgroup meeting will be open to the public through a conference call phone number and a web presentation tool on the Internet. Members of the public who participate using the conference call phone number will be able to listen to the meeting but will not be heard. There may be an opportunity for members of the public to submit written comments during the workgroup meeting through the web presentation tool. Submitted comments will be reviewed after the meeting.
Individuals who plan to use these electronic services and need special assistance, such as captioning of the conference call or other reasonable accommodations, should submit a request at least seven days prior to the meeting to Tanya Pryor.
Tanya Pryor
Interagency Autism Coordinating Committee
National Institute of Mental Health,
NIH6001 Executive Boulevard, Room 6187,
MSC 9669
Rockville, MD 20892-9669
Phone: 301-443-7153
Fax: 301-480-4415
pryort@mail.nih.gov
To register for the meeting, please go to the link below:
https://www1.gotomeeting.com/register/630812808
The conference call phone number is (641) 715-3222, access code 693-119-101.
If you experience any technical problems with the conference call phone number or web presentation tool, please contact GoToMeeting at 888-259-8414.
For more information on the IACC, please see the link below:
http://www.nimh.nih.gov/research-funding/scientific-meetings/recurring-meetings/iacc/index.shtml
Thursday, April 10, 2008
Autism: Just Not Okay
My autism mama blood boiled when the following story popped up on my Google news alert:
House Panel Blocks Autism Bill
OKLAHOMA CITY -- Parents crowded into a committee meeting Wednesday to express their support for "Nick's Law," which would force insurance companies to provide health coverage for autistic children.
But no one was allowed to speak.
The parents blamed Rep. Ron Peterson, R-Broken Arrow, chairman of the House Economic Development and Financial Services Committee, for blocking the legislation from being heard.
Peterson has been an outspoken critic of the legislation because he said it would raise the insurance premiums of all policy holders at a time when rising medical costs are the No. 1 concern of Oklahomans.
Democratic members of the committee vocally protested when a Republican member made a motion that effectively cut off debate on adding an amendment to provide health coverage for autism to another bill.
"It was orchestrated and I'm ashamed and, more importantly, the Republicans should be embarrassed for running a disgusting meeting," said Rep. Mike Shelton, D-Oklahoma City.
"Nick's Law" was named for the son of Wayne and Robyne Rhode of Edmond, who have been trying for two years to get health insurance coverage for autistic children.
"This is a pathetic move by the chairman," Wayne Rhode said. "He's protecting the insurance lobby instead of children."
Sen. Jay Paul Gumm, author of "Nick's Law," said 18 states have approved coverage of autistic children. He said the state of Indiana has provided data showing it has raised costs less than 1 percent.
Peterson provided figures Wednesday indicating that adding such coverage to state-offered insurance policies would cost about $6 million annually.
Gumm, D-Durant, asked, "Why are they afraid to hear this bill?"
He said that if the bill were allowed to go the House floor, it would have the over whelming support of both Republican and Democratic lawmakers.
No one was allowed to speak.
Six words that are particularly painful to hear for the parents of children who struggle to speak at all. And pardon my candor, but having lived in the neighboring state of Texas for many years, I can assure you that that the majority of children in Oklahoma are not receiving the educational or medical treatment they need.
You know. The intervention recommended by the American Academy of Pediatrics.
Fortunately, Texas recently passed legislation requiring that insurance companies provide autism-related coverage. They recognized the discrimination and rose above typical party-line positions to do the right thing.
But in the Sooner state, once again families have suffered the knee-jerk response from legislators that insurance companies routinely dispense when they hear the word autism:
Denied.
House Panel Blocks Autism Bill
OKLAHOMA CITY -- Parents crowded into a committee meeting Wednesday to express their support for "Nick's Law," which would force insurance companies to provide health coverage for autistic children.
But no one was allowed to speak.
The parents blamed Rep. Ron Peterson, R-Broken Arrow, chairman of the House Economic Development and Financial Services Committee, for blocking the legislation from being heard.
Peterson has been an outspoken critic of the legislation because he said it would raise the insurance premiums of all policy holders at a time when rising medical costs are the No. 1 concern of Oklahomans.
Democratic members of the committee vocally protested when a Republican member made a motion that effectively cut off debate on adding an amendment to provide health coverage for autism to another bill.
"It was orchestrated and I'm ashamed and, more importantly, the Republicans should be embarrassed for running a disgusting meeting," said Rep. Mike Shelton, D-Oklahoma City.
"Nick's Law" was named for the son of Wayne and Robyne Rhode of Edmond, who have been trying for two years to get health insurance coverage for autistic children.
"This is a pathetic move by the chairman," Wayne Rhode said. "He's protecting the insurance lobby instead of children."
Sen. Jay Paul Gumm, author of "Nick's Law," said 18 states have approved coverage of autistic children. He said the state of Indiana has provided data showing it has raised costs less than 1 percent.
Peterson provided figures Wednesday indicating that adding such coverage to state-offered insurance policies would cost about $6 million annually.
Gumm, D-Durant, asked, "Why are they afraid to hear this bill?"
He said that if the bill were allowed to go the House floor, it would have the over whelming support of both Republican and Democratic lawmakers.
No one was allowed to speak.
Six words that are particularly painful to hear for the parents of children who struggle to speak at all. And pardon my candor, but having lived in the neighboring state of Texas for many years, I can assure you that that the majority of children in Oklahoma are not receiving the educational or medical treatment they need.
You know. The intervention recommended by the American Academy of Pediatrics.
Fortunately, Texas recently passed legislation requiring that insurance companies provide autism-related coverage. They recognized the discrimination and rose above typical party-line positions to do the right thing.
But in the Sooner state, once again families have suffered the knee-jerk response from legislators that insurance companies routinely dispense when they hear the word autism:
Denied.
Monday, April 7, 2008
Autism: Turning the Tide
Be an opener of doors for such as come after thee. ~Ralph Waldo Emerson
We all have different ways of dealing with life's challenges. For me, it takes a while to actually accept the difficulty. Denial has always been my vacation destination of choice.
But I'm not one that enjoys extended stays. After a few days with my toes in the sand watching the tide ebb and flow, I feel the pull of gravity urging me to be in motion. Pull the sand from the shore. Be productive.
Do something.
According to an article that recently ran in the Baltimore Sun, I'm not the only one.
Paul Law grew up in what is now the Democratic Republic of Congo and always dreamed of returning one day, following in the footsteps of two generations of lay missionaries before him who built bridges and hospitals and cared for the sick. He envisioned earning a medical degree and moving back to Africa with his wife, Kiely, who is also a doctor, to treat patients.
But when the Laws' eldest child, Isaac, got a diagnosis of autism on his third birthday, their well-laid plans began to shift. Now they are undertaking a different kind of quest: to add every family with an autistic child to a vast computer database they've created to help researchers find a cure.
Since the Interactive Autism Network was launched more than a year ago by the Kennedy Krieger Institute in Baltimore, 21,000 families have completed online questionnaires about themselves and autism, a developmental disorder that varies in its expression but significantly affects communication, social interactions and other behaviors. Scientists studying other diseases or disorders have created registries, but IAN is by far the largest database of its kind.
The Laws hope that the project accelerates research by linking willing participants with autism researchers and enabling scientists to use the data to find trends or explore hypotheses.
"My parents were always on a mission, so it would be really odd for me not to have a mission too," said Paul Law, 38. "I've got to have a mission, or I don't feel right
Our little family was one of the original 200 families in IAN's pilot program. It has been extremely simple and gratifying to participate. If your family is directly affected by autism, I hope you'll take time to learn more about how you can participate by clicking here.
Happy first anniversary IAN. Here's to your mission and the opportunity you give families to be productive in the journey.
We all have different ways of dealing with life's challenges. For me, it takes a while to actually accept the difficulty. Denial has always been my vacation destination of choice.
But I'm not one that enjoys extended stays. After a few days with my toes in the sand watching the tide ebb and flow, I feel the pull of gravity urging me to be in motion. Pull the sand from the shore. Be productive.
Do something.
According to an article that recently ran in the Baltimore Sun, I'm not the only one.
Paul Law grew up in what is now the Democratic Republic of Congo and always dreamed of returning one day, following in the footsteps of two generations of lay missionaries before him who built bridges and hospitals and cared for the sick. He envisioned earning a medical degree and moving back to Africa with his wife, Kiely, who is also a doctor, to treat patients.
But when the Laws' eldest child, Isaac, got a diagnosis of autism on his third birthday, their well-laid plans began to shift. Now they are undertaking a different kind of quest: to add every family with an autistic child to a vast computer database they've created to help researchers find a cure.
Since the Interactive Autism Network was launched more than a year ago by the Kennedy Krieger Institute in Baltimore, 21,000 families have completed online questionnaires about themselves and autism, a developmental disorder that varies in its expression but significantly affects communication, social interactions and other behaviors. Scientists studying other diseases or disorders have created registries, but IAN is by far the largest database of its kind.
The Laws hope that the project accelerates research by linking willing participants with autism researchers and enabling scientists to use the data to find trends or explore hypotheses.
"My parents were always on a mission, so it would be really odd for me not to have a mission too," said Paul Law, 38. "I've got to have a mission, or I don't feel right
Our little family was one of the original 200 families in IAN's pilot program. It has been extremely simple and gratifying to participate. If your family is directly affected by autism, I hope you'll take time to learn more about how you can participate by clicking here.
Happy first anniversary IAN. Here's to your mission and the opportunity you give families to be productive in the journey.
Friday, April 4, 2008
Autism: The Airbrushing of Autism
All progress is precarious, and the solution of one problem brings us face to face with another problem. ~Martin Luther King, Jr.
I have no doubt that Jenny McCarthy is genuine and honest when she speaks about her experience with her son’s autism. You can practically feel the passion. She is moving and shaking to do all she can to help the many parents out there who genuinely relate to her experience. She is articulate and gorgeous...
…and everywhere.
The media’s ultimate Autism Mama.
But what about the rest of us? The Plain Jane's of the autism world?
I’m worried that Larry and Oprah and the IACC and the rest of the world are losing kids like Jack in the hype and buzz of it all.
To summarize our story quickly: Jack was born with a hole in his heart. He spent the first week of his life in the special care nursery because of blue spells and fever.
Jack has been challenged from the get go.
He didn’t regress. He didn’t die in front of me from a vaccine injury as Jenny says her son Evan did.
In spite of all that, friends, acquaintances and family all feel the need to try to morph our experience into Jenny’s.
Right. And I should also pose for the cover of Playboy next month. (Trust me, there’s not enough airbrushing in the universe to make that happen.)
Just not my life…not my reality…
I’m a flat-chested, forty-something mom with a little guy who is incredibly challenged. He has exhibited signs of autism his entire life. We’ve tried (and will continue to try) many different treatments for him, but so far haven’t really experienced a breakthrough.
The answers aren’t quite so simple for us.
So I cried tears of validation today when I read the following by legendary Autism Mama, Susan Senator:
I and perhaps many other parents in the autism community do not think it is at all productive to fault, even by implication, parents ….whose autistic children have not "recovered." If that is what Ms. McCarthy is doing, then that feels to me like a new form of McCarthyism, a la Senator Joe, or a new way of blaming parents, which is actually nothing new.
Autism is complex. Research is needed to figure out exactly what it is so that it can be identified, phenotyped, treated ... even cured. The sad reality today is many kids don’t “recover.” These beautiful human beings need and deserve our support.
Please.
World.
Oprah.
Larry.
It may not be sexy. But please. Don’t forget about them.
I have no doubt that Jenny McCarthy is genuine and honest when she speaks about her experience with her son’s autism. You can practically feel the passion. She is moving and shaking to do all she can to help the many parents out there who genuinely relate to her experience. She is articulate and gorgeous...
…and everywhere.
The media’s ultimate Autism Mama.
But what about the rest of us? The Plain Jane's of the autism world?
I’m worried that Larry and Oprah and the IACC and the rest of the world are losing kids like Jack in the hype and buzz of it all.
To summarize our story quickly: Jack was born with a hole in his heart. He spent the first week of his life in the special care nursery because of blue spells and fever.
Jack has been challenged from the get go.
He didn’t regress. He didn’t die in front of me from a vaccine injury as Jenny says her son Evan did.
In spite of all that, friends, acquaintances and family all feel the need to try to morph our experience into Jenny’s.
Right. And I should also pose for the cover of Playboy next month. (Trust me, there’s not enough airbrushing in the universe to make that happen.)
Just not my life…not my reality…
I’m a flat-chested, forty-something mom with a little guy who is incredibly challenged. He has exhibited signs of autism his entire life. We’ve tried (and will continue to try) many different treatments for him, but so far haven’t really experienced a breakthrough.
The answers aren’t quite so simple for us.
So I cried tears of validation today when I read the following by legendary Autism Mama, Susan Senator:
I and perhaps many other parents in the autism community do not think it is at all productive to fault, even by implication, parents ….whose autistic children have not "recovered." If that is what Ms. McCarthy is doing, then that feels to me like a new form of McCarthyism, a la Senator Joe, or a new way of blaming parents, which is actually nothing new.
Autism is complex. Research is needed to figure out exactly what it is so that it can be identified, phenotyped, treated ... even cured. The sad reality today is many kids don’t “recover.” These beautiful human beings need and deserve our support.
Please.
World.
Oprah.
Larry.
It may not be sexy. But please. Don’t forget about them.
Thursday, April 3, 2008
Autism: April 3, 2008, Another Historic Day in the World of Autism
Alert the media.
Contact the United Nations.
Dr. Gupta, time for a house call.
Big news from Boston.
Jack wore big boy underwear all day at school and didn't have a single accident.
Oprah.
Larry.
Call me...
Contact the United Nations.
Dr. Gupta, time for a house call.
Big news from Boston.
Jack wore big boy underwear all day at school and didn't have a single accident.
Oprah.
Larry.
Call me...
Wednesday, April 2, 2008
Autism: A Letter to my Son on World Autism Awareness Day
I'll love you forever
I'll like you for always
As long as I'm living
My baby you'll be
~Robert Munsch
Dear Jack,
Today is a historic day. The United Nations has declared April 2, 2008 World Autism Awareness Day. What does that mean? Actually, it's pretty cool. It means all around the globe, people are learning about autism. They are being made aware.
Awareness is a word that has become part of our everyday vocabulary hasn’t it? I believe in my heart that it creates understanding which then fosters change. I wish change wasn’t needed. But it is. Don’t worry sweetie. We’ll get there…
The irony is that the greatest lesson I’ve received in awareness comes from you, my little boy. Before you came along, I was rocking along in life, worrying about my job, my curtains, my neighbors … the beautiful racket of everyday life.
You shook things up though didn’t you? You didn’t walk when you were supposed to. You didn’t talk when you were supposed to. At first I told myself that you were just fine. There wasn’t anything to worry about.
I wonder how you felt as we sat in one fluorescently-lit examination room after another. You were so compliant, sucking your thumb and snuggling with mom. But the experts all knew immediately what was going on. I remained unaware.
You knew. And you showed me. You shook your head and peered out of the corner of your eyes. You didn’t answer when I called your name. Awareness sunk in.
And awareness changed me. I realized that you were taking a different path. At first I was downright panicked … frightened to the core. But you made me aware that it was okay to not always follow the predicted trajectory. You made me aware of what true, raw joy feels like when you fought hard to meet a milestone.
So here we are. You are four and simultaneously beautiful and challenged and happy. You deserve an easier go. You deserve commitment from those who love you to do all they can to help you. You deserve the opportunity to reach your full potential. You deserve to be treated with love and respected by the world around you. You deserve to feel better. You deserve a cure for the impairments you struggle with.
You are the best thing that has ever happened to me. Of that I am keenly aware. I don’t know that I tell you that enough…
But I wanted to make you aware…
I love you my beautiful boy,
Mom
I'll like you for always
As long as I'm living
My baby you'll be
~Robert Munsch
Dear Jack,
Today is a historic day. The United Nations has declared April 2, 2008 World Autism Awareness Day. What does that mean? Actually, it's pretty cool. It means all around the globe, people are learning about autism. They are being made aware.
Awareness is a word that has become part of our everyday vocabulary hasn’t it? I believe in my heart that it creates understanding which then fosters change. I wish change wasn’t needed. But it is. Don’t worry sweetie. We’ll get there…
The irony is that the greatest lesson I’ve received in awareness comes from you, my little boy. Before you came along, I was rocking along in life, worrying about my job, my curtains, my neighbors … the beautiful racket of everyday life.
You shook things up though didn’t you? You didn’t walk when you were supposed to. You didn’t talk when you were supposed to. At first I told myself that you were just fine. There wasn’t anything to worry about.
I wonder how you felt as we sat in one fluorescently-lit examination room after another. You were so compliant, sucking your thumb and snuggling with mom. But the experts all knew immediately what was going on. I remained unaware.
You knew. And you showed me. You shook your head and peered out of the corner of your eyes. You didn’t answer when I called your name. Awareness sunk in.
And awareness changed me. I realized that you were taking a different path. At first I was downright panicked … frightened to the core. But you made me aware that it was okay to not always follow the predicted trajectory. You made me aware of what true, raw joy feels like when you fought hard to meet a milestone.
So here we are. You are four and simultaneously beautiful and challenged and happy. You deserve an easier go. You deserve commitment from those who love you to do all they can to help you. You deserve the opportunity to reach your full potential. You deserve to be treated with love and respected by the world around you. You deserve to feel better. You deserve a cure for the impairments you struggle with.
You are the best thing that has ever happened to me. Of that I am keenly aware. I don’t know that I tell you that enough…
But I wanted to make you aware…
I love you my beautiful boy,
Mom
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