Autismville

Autism: One Forest -- Many Paths: Why the Asperger Parent Falls Silent

2009-10-14T12:51:00.003-04:00

My friend Christine wrote this and I begged her to let me share it. Read it ... really.

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Frank was a no-nonsense archetypal North Jersey Italian guy. I took to him pretty quickly because the accent and the attitude were pretty reminiscent of my mother’s family. I appreciated that Frank spoke fluent sarcasm and he pretty quickly figured out I was also a native speaker.

I think it’s also the nature of being out of town for a few days, tossed together randomly via belief in a common cause that inspires a fair amount of intense story swapping. We were working a booth at an autism conference, which tends to lead to having a drink after conference hours, which then leads to talking about why we had both found ourselves where we were at that moment.

Frank talked about his son Frankie, who presented with classic, Kanner’s autism (severe). At 15, he was still nonverbal, incontinent, and only seemed calm watching one Barney video, over and over. Alex, who was about 6, had long since mastered the bathroom (at least during the day) and spoke in complete sentences and could articulate needs sometimes, though not consistently. I shared this with Frank, albeit a bit sheepishly. I wasn’t sure where to go with that, or if it should even be mentioned. I knew if I was sick to death of urine-soaked nighttime pull-ups that he, who had been at it twice as long as I had, was obviously and understandably sick to death of constant adult-sized diaper changes. Compounded by the fact that my son was working on social skills and had formed some tentative relationships with some of his (also) high-functioning PDD/Asperger’s classmates, I sometimes felt guilty that I complained about anything relating to Alex’s form of autism, when there were people who were dealing with children much more affected than mine are.

Frank gave my arm a little squeeze and he finally said, “Bless you, Christine – you are going to have a really hard time of it. I take Frankie any day over what you have been handed.”

I just looked at Frank, speechless – probably the only time that weekend that I didn’t have a smartass retort for him. This was not expected and I’m sure something on my face conveyed that he needed to elaborate.

“You know, after 15 years, I am at peace with who Frankie is,” he continued. “He is a pretty happy kid, considering. Simple things make him content and he doesn’t know he’s any different than anyone else. He’s never going to be on his own because he doesn’t talk. He’ll be protected, somewhere, even after I’m gone. He doesn’t have the capacity to understand that society rejects him, and I am eternally grateful for that. God gave me a kid I could handle. I couldn’t handle your kids. I’d hate to know that Frankie understood his difference. Your kids – they are going to know and that is going to be hard on all of you. The rejection – the depression. I couldn’t handle that. And you have two of them, no less. I really do hope your younger one recovers. My daughter brought forth a joy that made the hard parts with Frankie so much more bearable.”

His utter conviction was breath-taking and enviable.

Our paths haven’t crossed again since that weekend five years ago, but Frank is just one of those people I think was placed in my path for a reason. He had an experience that very clearly needed to come to me when it did. I don’t think his attitude is a very common one, but I think I was meant to hear what he had to say. Frank was probably the first person that gave me tacit permission to take a look at my situation and validate that it was alright for me to have less than warm and fuzzy feelings about the Autism/Asperger’s/PDD-I-Don’t-know-for-sure-what-it-is-but-it-sure-ain’t-neurotypical we had been hit with to varying degrees in both of our sons.

I’ll let the parents of profoundly affected children in on a secret that shouldn’t be a secret. Sometimes we feel guilty that our HFA/AS/PDD kids are making progress. We wonder if we should edit that around you. We want our victories to be yours. We want you to have hope. We wonder why the hell our kids talk and yours don’t. And I think it’s precisely because we know on some level where you are because we started there that we sometimes find ourselves self-censoring. Maybe we think we are hiding this facet pretty well, and you already know how conflicted we feel about all of this.

For me – well I don’t really want to forget how we came to this point. What unites me with you, the parent of the profoundly affected child, is how we came to diagnosis. I felt how you felt. I grieved as you did. With every developmental stage not mastered, I too, still deal with new realizations and new grief. Part of the grief process for me was not knowing if we would make progress, just as you too had an uncertain prognosis. No one can see that far ahead when we first come to diagnosis. I was pretty damn scared and my fear was on par with yours. I don’t want to let go of that, not completely, because it helps me push forth the work that we all need done on behalf of the larger community. And what also unites us, too, is we both see the gaps. The gaps of our children with those that are typical. Your gaps are wider than ours are, but we also grieve the gaps… the milestones unmet. We see, too, how much more work needs to be done to get our children to independence and we worry that they will never quite make it. And we worry that because some of our higher functioning children are so skilled that they will fall through the cracks of a system that doesn’t care for the obviously needy very well, either.

I have come to view the autism spectrum as an all encompassing forest, being navigated by many types of travelers – affected individuals, parents, families, therapists and friends. There are many paths through this forest, and they are not all the same. Some of us are traveling through the edges of this forest see patches of sunlight and breaks in the trees, and may stop along the way in a clearing full of wildflowers from time to time. Others are deep within the forest, on a path full of thickets and foliage overhead so thick that sunlight barely filters through to the ground– where strange sounds and limited ability to move make that same, vast forest a truly frightening place to be.

We, as travelers, can be so consumed with our place on the path, that literally – the forest can not be seen for the trees. The experience of the travelers on the edge of the forest is vastly different from those deep within – but it is the same forest.

At some point, our common path on this journey through the woods of autism diverged. Make no mistake, we are still both in the woods, and I can still see you through the trees. If I call out, you are there and I can hear you too. We are talking, back and forth, about what is hard about our path. We are not so far apart, at least not yet. But we are most definitely apart.

Your path has knarled roots that are tripping you up and you are looking ahead in the dark for that big hole you suspect is there. Mine has the same types of pitfalls, perhaps not as many or as challenging, but they are there laying in wait, to trip me up. There are other things that trip me up that you may not ever have to consider, and we have talked enough to know that you’ve got traps that I just won’t have over here.

I suspect your path is harder, but I’m on my own path with its own hardships, so I don’t know. Believe it or not, there are elements of your path that I envy, at least what I can see of your path from my side of the forest. I am on my path with two affected children. You are on your path perhaps with only one. I envy your beautiful, typical, talented daughters and handsome sons who I view as supportive and built in escape valves for you. You will most likely have a wedding to go to and a grandchild to hold from that child, who seems so mature for a mere child. If nothing else, at least right now you have football games and school plays and all sorts of typical to sustain you and give you something to look forward to away from the challenges the other child’s autism presents. Hopefully that same beautiful child will grow into the responsible guardian of your child with autism. I have no guardian or escape valve. I am happy that your child writes, and advocates, and plays baseball, or sings beautifully. You have that bit of normalcy that escapes and evades my family and my path. You can have dreams that I can’t allow myself to have right now – and possibly not ever. I've got some superfically normal looking stuff here, but even normal is hard work and I try not to show too often how hard it is. I am not the first Aspie mom Pretending To Be Normal and I won't be the last.

I don’t know that my path is harder for that reason; I only know that it’s different.

I wonder too, if I keep walking down this path, that the path may split again. And the next time it splits, my children may walk down a different path with others who have Asperger’s while I remain on this one as a parent, stuck between their path and yours on my other flank. If your child never speaks, can you possibly worry that after all of your struggling to help him, that he may grow into an adult that will damn you for trying? By participating in research, or for speaking of the hardships in order to raise awareness? Do you wonder and worry that your desire to help your child may be twisted in his mind as his utter conviction that you really despised him at the root of it? I have often wondered and worried that I might not be to convey to my boys that I would eradicate the autism without wiping out the individual. What if my son comes to believe that his autism is something positive and integral to who he is? With his literal thinking, will he ever be able to understand the nuance?

I often wish I didn’t have to worry about this aspect of it.

I believe that when our adult children with Asperger’s walk their own path, we as parents, fall silent for this reason. We still see you on your path. And we see our children on theirs. We are stuck in the middle, with our own feelings – putting our children first. We still feel as you do, but – we begin to worry and wonder that if we shout our support in your direction, that they will hear it on their path and misinterpret our supportive words at you as an insult towards them. You don’t see their path and they don’t see yours. We see both and we must put them before you. We are stuck between parenting them, and supporting you. And we fear where we will be without your support.

The words I want to give you in support are falling thick on the roof of my mouth like half-dried peanut butter lately. Words evade me lately… I’m still not sure where we are going, but I see the possibilities – I can still see you on your path. But I also see the path on the other side… the side where the people with Asperger’s are walking. I feel my grip on my boys loosening and their vision directed to the other path. I see that divergence ahead. I hold my tongue more because, I still care about the cause, but I put my sons above the cause. What I say matters. What I say can affect them. I need to consider where my sons are going, too. I would not be in the forest with you at all were it not for them.

I have always felt that on some level, we are the bridge between the pro-cure and neuro-diveristy factions of our community…

But.

I’m having a hard time fighting for the forest when the path ahead of me is so uncertain.

But it is the same forest, even if you can’t hear me anymore.

I’m still here.

I Just Couldn't See It

2009-09-27T13:07:00.006-04:00

I just couldn’t see it.

As I lay on the examining table, dreading the jab of the amnio needle, out of the corner of my eye I saw Andy jump for joy. The tech looked up and smiled at him …

“Looks like we’ve got a boy here..” he smiled.

My heart sank. A boy? How in the world would I, the biggest girly girl in the universe, successfully manage testosterone and football games and frogs and all that boy business?

I just couldn’t see it.

But of course, I fell in love with my boy and the whole idea of him within a few hours. Our boy, our beautiful Jack completed our happy family. Amy showed no signs of jealousy, loving him from day one. We watched Barney and The Wiggles, changed diapers and lived that crazy, elusive American Dream. As Jack grew older, I made sure that he was appropriately placed on the wait lists of the very best preschools.

I knew that he was going to be just like his Dad. Valedictorian of his class … captain of the football team.

So when the director of his prestigious preschool pulled me aside and whispered “I think Jack may not belong here…” I was shocked. Defensive.

I just couldn’t see it.

True he was two and not talking. But he was a boy. Boys develop more slowly. When our beloved pediatrician wheeled her round stool across the examining room and shared her concerns … “Jack should be talking, pointing, playing with trucks and airplanes. He should look at something when you point at it.. We’ve got to figure out what’s going on here..”

I just couldn’t see it.

Within two weeks he was diagnosed with autism. Two foggy, mind-blowing weeks.

Autism.

Hot, heavy tears fell down my cheeks into my lap when the neurologist gave me the diagnosis. “Well, what did you expect to hear?” he said to me, looking almost puzzled.

He didn’t understand… I just couldn’t see it.

But I had to see it. My son gave me no choice. And eventually my blurred vision came into focus. I opened my eyes to help and hope. Jack started receiving treatment. We worked with many committed therapists and doctors, helping Jack to learn a way to communicate. I tempered my expectations along the way. Couldn’t bear to experience the pain I had felt in those early days. Jack’s autism was severe. I had accepted that. We would do the best we could for him.

So last fall, when I took Jack in for his yearly evaluation with his beloved neuropsych, I was taken aback when he grinned and looked at me. “This kid is moving!” he exclaimed. He then reminded me how just a year ago Jack was testing at the development age of a 6-12 month old, even though at the time he had been 4. But this year, at the tender age of 5, Jack was testing at a 2-3 year old level. He had made dramatic gains in just a year! Dr. C put his hand on my shoulder and told me I might just want to adjust my expectations a little bit…Maybe start using the world “moderate” instead of “severe.” Silly, shell-shocked me…

I just hadn’t seen it.

I’m writing this appeal just a year later and my beautiful little boy continues to improve. His vocabulary is broadening. He’s learned how to point. He is reading sight words, just like other six year-olds.

He is happy.

Thank God, he’s happy.

And me, I’m a different person than I was 4 years ago. My tear-filled eyes have been opened to so many things. Autism research is still in its infancy, but we’re learning more and more about what autism is and how to effectively treat it. Unfortunately, during these difficult economic times, budgets are being cut, and research is slowing. But for me, one who has finally allowed herself to really hope … to dream..

I just can’t see it.

Autism services in medical and educational settings are still extremely limited. Our sweet Jack has been fortunate to receive the best of care. He attends Nashoba Learning Group, one of the best schools for kids with autism in the country. He receives medical care at the LADDERS clinic, part of the Autism Treatment Network, funded by Autism Speaks. I smile when I hear his doctor say things like “This kid is moving!” But the reality is Jack’s good fortune hasn’t just fallen into our laps. We’ve spent thousands of dollars accessing treatment for him.

Personally, I’ve advocated. I’ve worked….very hard.

For those that say autism = hopeless; who tell me I should be happy with the scant support that most people with autism receive …

I just can’t see it.

I write to you today, because you are part of my life. I hope that somehow you can share my vision for kids like Jack. They need and deserve solutions. Autism Speaks, through difficult economic times, continues to lead the charge in scientific research, global awareness, advocacy and family services for autism. Their work must continue. It just has to.

Team Jack Attack will be walking once again at this year’s Greater Boston Walk Now for Autism Speaks. We hope to raise $20,000, a lofty goal. But if all of our family and friends would chip in just what they can, I believe we can make it.

To make a donation, please visit our team page at http://www.walknowforautism.org/greaterboston/teamjackattack.

You can join our team, or just make a donation on my personal donation page. If you prefer to mail in your donation, there’s form you can print out and mail in on my page as well.

Finally, please take moment and visit my Happy Birthday Jack page. It tells you everything you need to know about help, hope and love.

Trust me.

You’ll see …

Autism Insurance Coverage: It's Time for Congress to Listen

2009-07-08T08:10:00.006-04:00

If you want to make the world a better place
Take a look at yourself and then make a change
~Michael Jackson

There are moments in life, realizations that occur, that just can't be shaken. One of those unshakable moments for me was the day I stood in my kitchen and realized that I was going to have to pay for Jack's medical treatment.

All of it.

Was it because of something I had done?

Was it because of something he had done?

No ... it was because of his diagnosis.

We had just navigated the minefield of evaluations, diagnosis....prognosis. We were bloodied, but still walking. I had blinked back my tears and swallowed the lump in my throat as my pediatrician told me about treatments that would help keep me baby out of an institution. Treatments that had been well-researched and endorsed by the American Academy of Pediatrics.

I held Jack's warm hand in mine as I pushed open the glass door of the medical office and walked to my car, prescriptions and instructions tightly clutched in my grasp.

Hope was just a few phone calls away.

I started making appointments. On the other end of the line I heard benign voices muttering words like "wait list" and "paperwork to complete..." No surprises there. I was up to the task.

One word I did not anticipate hearing over and over and over: Denied.

But I did. And I met family after family who heard that word over and over too.

Denied. Denied. Denied.

I knew in my heart that this was just plain wrong. People should not be denied health insurance coverage for evidence-based treatments just because they've been diagnosed with autism.

Families should not have to sell all they have and move and empty their savings just to pay for therapy.

People with autism should not do without critical therapies just because of their bank balance.

It is just so wrong.

The irony is that the denials not only empty the bank accounts of families seeking treatment for autism, but it robs them of much-needed time.

Autism is a 24/7 lifestyle. People with autism need constant supervision. Many times they have trouble sleeping. They have seizures. They can have self-injurious behaviors. Their inability to communicate can cause them to scratch and bite and kick in frustration. Families many times are exhausted and broke. They don't have the time or resources to fight for insurance coverage.

And health insurers exploit that and persist with their knee-jerk response: Denied. And they get away with it.

The time has come for the federal government to end this discrimination once and for all. In every state. In every health insurance plan. That is why I am sharing the following with you:

Autism Speaks, the nation’s largest autism science and advocacy organization, announced in a press release today that they have launched a new national television advertising campaign highlighting private insurers’ blatant discrimination against children with autism and calling on Congress to put an end to it as part of the broader health care reform effort. The thirty-second ad, “Neighbors,” will air nationally on CNN, CNBC, and MSNBC.

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"Neighbors” depicts two young boys who are next door neighbors – one, whose insurance has given him access to autism therapies is shown playing with other kids; the other, who has been deprived of access to therapies, sits alone on his lawn, socially isolated. The TV spot ends with a call to action, urging the American public to call United States Senate Majority Leader Harry Reid (D-NV) and House Speaker Nancy Pelosi (D-CA) to tell them that any national health care reform plan that does not include autism insurance reform is unacceptable.

“Short of finding a cure for autism, there is nothing that can have a more significant impact on the lives of people with autism and those who love them than putting an end to insurance discrimination,” said Bob Wright, co-founder of Autism Speaks. “During the presidential campaign, President Obama committed to ending autism insurance discrimination, and the pending comprehensive health reform legislation is clearly the way for that promise to be fulfilled. Now is the time to finally right this terrible wrong.”

Yes it is Mr. Wright. Thanks for saying it.

Please readers. I need your help. Take time to call today. Call (202) 224-3121 and tell Speaker Pelosi and Leader Reid that that health care “reform” that fails to stop autism insurance discrimination is unacceptable.

And for those of you who are frequenters of Autismville, you just might recognize a little guy in a green striped shirt in the ad. More to come on that experience very, very soon.

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For more information about the campaign to end discrimination against people with autism by health insurers, please visit http://autismvotes.org.

Autism: Hope for the Dreaded Haircut

2009-05-30T15:38:00.005-04:00

It's no secret that I'm a fan of Autism Speaks Family Services' efforts. The first thing you'll find when you visit my blog is a link to their 100 Day Kit, which is an amazing resource for families who have just received that mind-boggling autism diagnosis. They also award community grants to service providers that serve to build the field of services for individuals with autism and expand the capacity to effectively support our community. And then of course they have their School Toolkits and the new Autism in the Workplace initiative as well as the Advancing Futures for Adults with Autism ..... The list of resources goes on and on. If you haven't checked it out recently, seriously, you should.

But their newest initiative is one that is especially near and dear to my heart. So many of our kids with autism have such a tough time going to get their hair cut. Parents and hairstylists bear the battlescars of nightmarish visits to the local salon, which explains why so many of our kids walk around with shaggy (although I think endearingly cute) heads. Personally speaking, I put off haircuts until I can no longer see Jack's beautiful baby blues (or my in-laws are scheduled to visit) and then grit my teeth and take him. It is not, shall we say, a pleasant experience.

The good folks at Autism Speaks (many of them parents of kids with autism themselves) have teamed up with Melmark New England and Snip-its (a haircuttery chain for kids that I'm sure many of you are familiar with) to produce a how-to video and haircutting training guide for our families. The guide even contains a social story that you can share with your child before going to the salon.

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(Pssstt... Take a peek at the video. You might just notice a familiar little boy on your screen.)

For additional information about how to make the haircutting experience a more positive one for children with autism, visit Autism Speaks.

Here's to more good hair days and more peace of mind for all of us. Now go forth and snip!

Autism: Yes We CAN

2009-04-26T10:00:00.009-04:00

I was driving in the rain, both kids napping in the back seat, heads tilted, mouths curled in parallel fashion. I smiled to myself.

Such beautiful babies.

The cell rang and "the babies" both simultaneously startled. (Okay, the babies are 8 and 5, but I’ll always think of them as my babies…Just keeping it real....) I glanced in the rear view and smiled back at them, lifting my hand in a goofy wave.

The arch of my hand, the trajectory of the back and forth motion … it was somehow familiar.

A warm feeling swept over me.

It was my dad’s wave. The arch of the hand was his. I could see him in his button-fly 501’s and his flip flops, waving that stupid wave. My eyes welled and I gazed upward. It felt good to catch a glimpse of him. He’s been gone so very long.

Forty.

That’s how old he was when I stood in the cemetery in San Jose. He had turned forty just the week before. He’d been diagnosed with brain cancer eleven years earlier. The doctors at Stanford had worked hard to keep him with us over the last decade. Hospice had finally stepped in.

And now, I focused as hard as I could at the wood grain of his casket.

It was oak.

And he was in there. My handsome, eccentric, engineer dad in his best suit. Looking so perfect. He had just been playing jazz chords on his treasured baby grand the week before. And now this sturdy oak casket was about to be lowered into the California ground.

I swallowed hard, trying to conquer the lump in my throat.

I looked up at the blue sky and breathed in. His mail was still in the mailbox. His car parked in the garage. But somehow I was supposed to convince myself that he wasn’t coming home.

Almost twenty years later, I named my son Jack. After my dad, of course. His legacy. And of course that Jack, much like his grandfather, has led me down the path of love and joy and unanticipated fear and worry.

I’ve memorized moments with him too.

I vividly remember staring at his bassinet stationed by my hospital bed, wondering what this little boy would teach me. The pediatrician walking into my hospital room the following day, closing the door behind him and clearing his throat.

"Ms. Ursitti, we need to talk..."

His mouth spoke words I couldn't quite digest. Cardiologist.. Testing. Possible transfer.

And so I remember spending that first week shuffling up and down hospital corridors, c-section staples aching, going to the special care nursery to nurse him. Sitting in bed with him when he was just three weeks old, watching him smile at his sister. The unanticipated moment a couple of years later the neurologist scrawled the word “autism” in Sharpie across his medical record.

The best memories, of course, are the joyful ones. The moment he said “mom.” The moment he spontaneously stuck a chicken nugget in his mouth and actually ate it. The first juicy kiss he planted on my cheek just a couple of months back. The laughter. And there's been so much.

Still, it’s been a tough road for him. Like his grandfather, he’s spent a lot of time in rectangular examining rooms with fluorescent lighting. We’ve done the MRI’s, read the lab results, hoped and prayed. The white coats, for the most part, have been kind to us. But they can’t even begin to tell us the biology of his autism. They do the best they can, based on the information they have.

And I wish for more.

I wonder how long it will take for us to learn the biology. Science seems to move at the slowest of paces, lumbering along without any sense of urgency.

Just this past week I read an article in the New York Times that reported the death rate for cancer, adjusted for the size and age of the population, dropped only 5 percent from 1950 to 2005. And that is after Richard Nixon waged “war on cancer” and billions of dollars have been invested in cancer research.

Two decades since that beautiful day in San Jose when I stared at that damned casket. Little progress.

Is it hopeless? Is the complex group of diseases we call cancer something we will never figure out? And is the complex neurological disorder called autism that somehow mildly affects some, while devastating the well-being of others, something we will never be able to quantify somehow?

Call me crazy, but I say not by a long shot. Human beings prevail and progress. It’s part of our makeup. We must find the answers. We have to know.

So hope remains eternal. And this week, a much-needed glimmer came my way.

When I first heard about the Cures Acceleration Network, I thought about the oak grain and the smell of that Sharpie. I thought about the worry that clouds the future, no matter how hard I try to pretend it will all be okay.

I feel validated to know that I’m not the only one who worries about the speed of science.

And the needs of those who suffer.

Who deserve to live.

And play jazz chords

And to know their grandchildren.

Who deserve to speak.

And eat chicken nuggets.

And laugh.

And to know their grandparents.

Who deserve a life with fewer white coats and fluorescent lights... and more blue skies.

Who need some help, not later but now.

Call me a dreamer... It’s the ultimate compliment.

If you're a dreamer too, please visit http://www.specterforthecure.com/.

Autism Awareness Sibling Style

2009-04-11T10:17:00.008-04:00

Amy brought me this letter today, asking if we could mail it to the President. I thought it was worth sharing.

She's eight, but she has a lot on her mind, that one...

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Dear Barack Obama,

When you said the thing about the Special Olympics, it really hurt my family. My little brother, Jack, has autism and we felt like you made a joke out of him. He's a great person. Sure, he has autism. But he's the same as anyone else in the world. I think he's the best little brother in the whole world and he shouldn't be made fun of.

I am in third grade and my little brother gets notices about kindergarten but he can't go to my school. A lot of people in public make fun of him, and it makes me feel bad. My brother doesn't even seem to understand that people think that he's dumb or stupid. He is practically normal, but it's just something in his brain that makes him different.

Really, he's not dumb or stupid at all, but he is unique.

Now a lot of people think it's okay to make fun of people with special needs. But I think that people with special needs are strong, because they have a hard time learning. But they're trying their best.

Sincerely,

Amy Ursitti

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We are stamping and sealing and sending this on. Special needs siblings have so much to say.

******

To read more about perspectives from siblings of kids with autism check out the new book from Ouisie Shapiro called Autism and Me. I'm so proud to say that Amy contributed to this beautiful book. I think I'll be sending a copy of it along with Amy's letter to the President.

Autism: April is the Sweetest Month

2009-03-31T11:03:00.004-04:00

The sun is shining.

The snow is melting.

And hope springs eternal....

Time to flip the page on the calendar...

Happy Autism Awareness Month!

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Autism: Sticks and Stones and Presidential Punchlines

2009-03-20T08:44:00.006-04:00

"We must build a world free of unnecessary barriers, stereotypes, and discrimination.... policies must be developed, attitudes must be shaped, and buildings and organizations must be designed to ensure that everyone has a chance to get the education they need and live independently as full citizens in their communities."

-- Barack Obama, April 11, 2008

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This sort of attitude is hurtful.

Really.

I'm not saying it to be melodramatic. I genuinely feel that way.

Hurt that the leader of our country would make people with disabilities, people like my son, a punchline.

On national television.

Not. Cool.

So Mr. President, if you are reading this, I would ask you to take this situation and turn into something good. Look into the television cameras and admit that you screwed up. Tell America that the kids on the short bus are so much more than a punchline. They are hardworking heroes.

That sort of change is the change we need.

Autism: Ladies and Gentlemen ... Your Next American Idol!

2009-03-11T12:47:00.002-04:00

Simon Cowell, eat your heart out...

Autism: Beautiful Dreamers

2009-03-09T17:42:00.003-04:00

For everyone who thought I couldn’t do it.
For everyone who thought I shouldn’t do it.
For everyone who said, ‘It’s impossible.’
See you at the finish line.
~Christopher Reeve

The White House Blog included an entry today that brought tears to my eyes:

"At a time when the issue of stem cell research seemed to be fading from the national consciousness, a number of advocates stepped forward – as the President described this morning -- to ensure it wasn’t forgotten.

None were more passionate than Christopher and Dana Reeve. We asked Peter Wilderotter, who is the current President and CEO of the Reeves Foundation, and who attended the signing today, to tell us what the day meant to him. This is what he told us:

Last Friday marked the three-year anniversary of the death of our beloved Dana and in an instant sadness turned to hope as only she could do when we learned of the President's decision to lift the restrictions. Today in the East Room of the White House to be surrounded by so many allies and friends who fought so long on this -- I was reminded of Chris Reeves’ edict that nothing is impossible.

The eloquence of President Obama and his graceful and stirring remembrance of Chris and Dana shall echo always and be the fuel for our journey to provide today’s care as we search for tomorrow’s cures. Here is that remembrance from the President as he closed out his remarks at the ceremony today:

One of Christopher’s friends recalled that he hung a sign on the wall of the exercise room where he did his grueling regimen of physical therapy. It read: "For everyone who thought I couldn’t do it. For everyone who thought I shouldn’t do it. For everyone who said, ‘It’s impossible.’ See you at the finish line." Christopher once told a reporter who was interviewing him: "If you came back here in ten years, I expect that I’d walk to the door to greet you."

Christopher did not get that chance. But if we pursue this research, maybe one day – maybe not in our lifetime, or even in our children’s lifetime – but maybe one day, others like him might. There is no finish line in the work of science. The race is always with us – the urgent work of giving substance to hope and answering those many bedside prayers, of seeking a day when words like "terminal" and "incurable" are finally retired from our vocabulary.

Today, using every resource at our disposal, with renewed determination to lead the world in the discoveries of this new century, we rededicate ourselves to this work."

So yes, I cried when I read this. I've prayed the bedside prayers. I've kissed my only son's sweet head and worried and wondered what will become of him. On days like today, I'm sustained by the vision of the dreamers.

To Christopher, Dana and all of my fellow dreamers...

Yes ...

Here's to the dream.

See you at the finish line...

Autism: It Actually is a Wonderful Life

2008-12-14T17:10:00.008-05:00

I will honor Christmas in my heart and try to keep it all the year.
~Dickens

It’s a sunny, crisp, December Sunday, perfect for relaxing on the sofa with a cup of steaming coffee.

Ah, peace.

For me, not to be.

Instead, I’m feeling stressed. Behind.

Harboring a case of holiday hopelessness.

It started earlier this week when I went to book club for the first time in months. (We read American Wife. Thumbs up from me, but I, as usual, digress.) The other book club moms were comparing notes on who was hiding what gifts in whose garage, etc., etc. I took a sip of my Diet Coke and sat in failed silence.

Secret confession: so far I’ve purchased two (count them two) Christmas gifts. Hiding, wrapping and planning are so far beyond me. When the book club moms started talking recipes I knew I was screwed.

Sigh.

But the journey of a thousand miles begins with a single step, right? I determined then and there to at the very least get my act together and get my holiday cards out pronto.

Which leads me to this morning.

Amy and Jack were strategically dressed alike in the red plaid pj’s I ordered online last minute from Gap. I’d also ordered some cool holiday cards from Exposures just screaming for a poignant black and white of my two little elves. Those in receipt of the cards, I envisioned ripping open their envelopes, their mouths agape as they simultaneously teared up upon seeing such an elegantly sweet holiday photo.

With visions of sugarplums dancing in my head, I pulled out my trusty Canon and started shooting.

And shooting.

Reality hit when Jack began to roar and Amy started referring to him as

Fart-face.

Pa rum, pa pum, pum… (Seriously, I hate that song. I really do.)

So yeah, I'll admit it. My gifts aren’t purchased. And correct, I don’t have the perfect stockings- hung-on-the-mantle-angelic-children-beaming-at-the-camera Christmas photo.

And yes, five year-old Jack has peed on the rug twice today. His IEP is tossed on the ottoman, waiting for Andy to review. Amy is currently at Sibshop, hanging out with other sibs of kids with autism. She’ll come home and roll her eyes when I ask her how it went, reminding me that “what’s said in Sibshop stays in Sibshop Mom…”

It’s not the life I expected.

But somehow, on most days, all is calm. And all is bright.

We’re together. We’re safe and warm and dry. We love each other in a comfortable, familiar, quirky sort of way.

There's more than one recipe to a truly wonderful life.

Now forgive me as I dash away…

Fart-face just pooped on the floor.

Autism: Simple Gifts

2008-11-22T14:11:00.004-05:00

When true simplicity is gain'd,
To bow and to bend we shan't be asham'd,

To turn, turn will be our delight,
Till by turning, turning we come round right.

I hope today, and every day, you find a reason to dance.

Diagnosis: Hope

2008-11-09T10:47:00.005-05:00

When Jack was diagnosed with autism three years ago, our pediatrician prescribed speech and occupational therapy. She also prescribed applied behavior analysis (ABA) therapy. I walked out of her office fully anticipating wait lists and lots of appointments.

What I didn't anticipate was the blatant discrimination we were destined to receive at the hands of our insurance company. I didn't realize that an autism diagnosis equated a coverage death sentence for those needing treatment.

I had no idea I would hear one word over and over and over:

Denied.

Speech and OT were limited to a certain number of visits. (Seems as though one hour of speech therapy per month and two hours of occupational therapy per month were considered appropriate in the eyes of our insurers.)

Let me say that again. One hour of speech per month...for a nonverbal child.

If I hadn't lived it, I wouldn't believe it.

And as for the forty hours of ABA prescribed: Denied. Denied. Denied.

Hope. Denied.

We turned to our affluent Texas school district hoping they might help. We hired a lawyer. Drafted letters. Attended meetings. And got absolutely nowhere...

Hope. Denied.

Our child was sick. Our doctor prescribed evidence-based treatment. And it was completely up to us to pay for it.

I wish I could say our story was the exception as opposed to the rule. The sad reality is that in the vast majority of homes affected by ASD across our country, children are not receiving services. There are some savvy corporations that have stepped up and done the right thing by covering treatments. (Microsoft and Home Depot cover ABA.) There are also several states that have mandated coverage. (Texas, Louisiana, Arizona, Florida and Pennsylvania to name a few.)

Unfortunately, these band-aids aren't controlling the blood loss. The wound is gaping. Major surgery is warranted.

But today, maybe, just maybe, we have some reason to hope...

Per the Autism Votes web site:

(November 5, 2008) President-Elect Barack Obama's win last night may prove to be a win for the autism community as well. In his campaign statement on Autism Spectrum Disorders, Obama has committed to bringing autism insurance reform to our entire nation.

His statement reads, Obama and Biden "will mandate insurance coverage of autism treatment and will also continue to work with parents, physicians, providers, researchers, and schools to create opportunities and effective solutions for people with ASD."

You can read a draft of President Obama's federal mandate for autism insurance coverage HERE.

Here's to coverage for treatment, no matter what your zip code or your bank balance is. Here's to acknowledging the fact that autism is treatable and insurance should cover that treatment. Here's to doing the right thing.

Here's to hope.

******

To join me on this journey of hope, please register for legislative updates at Autism Votes.

Autism: Howl-o-ween

2008-10-31T22:21:00.006-04:00

Okay. So it didn't go so well this year ...

Click HERE to see more. (Heed my warning. This is not for the faint of heart...)

How were your little ghosts and goblins? Did you medicate yourself with fun size candy bars like this autism mama did? (Blek.)

Dish please.

Autism: Um .. Excuse Me ... Come Again?

2008-10-27T19:53:00.004-04:00

“This kid is moving…”

Those were the words Jack’s neuropsychologist, Dr. C, said over and over today at our annual feedback session. (He has just finished up a round of extensive evaluations on Jack…Our IEP meeting is in a couple of weeks.)

I kept waiting for him to get to the bad part … the inevitable “but” that always ends up in these conversations. But the “but” never came. Instead he used words like “remarkable” and “dramatic.”

He showed me on paper where Jack was fifteen months ago when he first saw him. (The kid just couldn’t do anything.) But after a year of quality 1:1 ABA at Nashoba, he is progressing faster than we ever thought possible.

Yes, he is five and still essentially nonverbal. But he is finding amazing ways to communicate through gesturing and PECS. In the last year he has progressed from testing at a 6-12 month old developmental age to now a 2 ½ to 3 year-old. And Dr. C, who last year somberly told me to prepare myself for the worst, said his estimates were conservative. He also told me I might need to start altering the way I describe Jack to others …

Dare I say the word? Moderate?

Jack surprised us all. He is living proof that quality ABA intervention truly can make the difference in the life of a child.

Is he out of the woods? Not at all.

But the sun is shining through the trees and the future is looking brighter..

This kid is moving alright … And his mom is crying happy tears today.

Autism: October Surprise

2008-10-25T10:31:00.004-04:00

Saturday morning on the couch in my pajamas. I’m sipping coffee and enjoying the luxury of a weekend that has no appointments, events or obligations. I hope to get some work done, laptop cradled on my flannel-laden knees, running Jack to the potty every forty minutes.

Pee. Flush. Cookie. Smiles.

The last couple of months have been a whirlwind. I’ve gone back to work full time which has thrown our family life akilter. We’ll adjust, but it’s very much like starting a long, long run. The side stitches can be painful, but if you just push through them they’ll subside.

Or at least that’s what I’m choosing to tell myself.

This time of year is just busy in general. It’s IEP time for Jack and that means a flurry of appointments with all of the “ologists.” In the last two weeks we’ve been to the neurologist, cardiologist and the neuropsychologist.. (We’ve also been to the pediatrician, but that doesn’t jive with the whole ologist theme…)

In the past I’ve attempted to swallow the lump in my throat, clutched Jack’s warm hand and walked him into ologist’s office after ologist’s office with the same thought running through my head:

How did we get here?

This wasn’t in the whole happily-ever-after plan.

I.Am.So.Alone.

Looking back over the last couple of appointment-filled weeks, I haven’t felt that way. At all. The side stitch is subsiding. I haven’t shed a single tear. The cloud of foggy shock lifted at some point. The ologists have become extended family. The familiarity is a source of comfort.

October 11th, the third anniversary of Jack’s brutal autism diagnosis came and went without a thought. At the time, it knocked me to my knees. Three Octobers later, I’m thinking a corner has been turned.

We’re moving into year four. Finding our pace I suppose.

Do I think the emotionally trying times are gone? I wish I did, but I know better than that.

Do I still long for a cure for Jack’s severe challenges? Every day.

Do I still worry about what will happen to Jack when I am gone? Every moment.

Do I still long for words from that sweet mouth?

What I wouldn’t give.

But I am reminded that the journey has made our family stronger. We’ve built muscle and stamina. We're better as opposed to bitter. I’m at peace in my pajamas with my cup of coffee. Like Susan Senator always says, all happy families are not alike.

I think I’ll head out in a little while for a nice, long run.

Autism: Jacket Weather

2008-10-14T08:27:00.002-04:00

There was a chill in the air as Jack darted past me through the open front door. Our sweet neighbor kids from next door wanted to play with Amy. As I grabbed Daisy, our crazy golden retriever’s collar and simultaneously negotiated play time, Jack saw his opening.

In a split second he was gone.

The kids bounded in and I rushed out, around the corner of the house to the back, ominous headlines scrolling across my brain.

There he was. Short sleeves. Bare feet. Perched in the top of the play set, spinning the plastic wheel bolted into the red wood.

Smiling.

It is postcard beautiful here in New England these days. And it warms my heart that the kids want to be out, breathing in the crisp autumn air. Screaming, running full speed … spinning the wheel atop the play set.

But it’s also getting colder. I’ve already hit Lands End, buying the polar fleece pullovers and light jackets that will see the kids through fall.

I ran inside to quickly grab Jack’s new jacket. I grabbed his Crocs too and rushed back out.

Shoes first, I thought, so I reached up and placed them in front of his stubby feet. He grabbed them, grinned at me, and promptly tossed them over the railing to the ground.

Grrr…

I decided to just roll with it, so I handed him the jacket.

It was one of those moments I have lived over and over and over the last five years.

I handed him his jacket, but I knew that I would absolutely have to climb up and help him. (For some inherent reason, I always have to provide the opportunity for him to surprise me…. To succeed in doing something that I know he can’t do.)

Assume competence.

Jack grabbed the jacket, promptly and appropriately rearranged it, put in his left arm, swung it around and groped for the right sleeve.

The kid made it look easy.

After years and years, exposure, exposure, exposure, repetition, repetition, repetition …

He made it look easy.

Progress. It’s immediately and completely intoxicating. The warmth of it overtook me, wrapping itself around me like cashmere.

I smiled. Jack smiled … and kept on spinning.

Autism: His Sister's Keeper

2008-10-10T18:07:00.005-04:00

All of the people around us they say
Can they be that close
Just let me state for the record
We're giving love in a family dose

~Sister Sledge

Andy shot the Superdad glare across the room at me the other night. A shiver went down my spine. Superdad glares are never good...

Why the glare? It seems Amy had succeeded in tripping me up in one of the oldest parent-child booby traps in the book: playing us against each other.

Like most parents I know, Andy and I have an unwritten rule. We've got each other's back. Fighting about any childrearing differences is a behind-the-scenes affair. It's the whole united we stand, divided we fall parental approach.

But Amy, she's a smart one. She targeted me at a moment of total weakness. I was busy answering e-mail number 10,122 when she sauntered into the office and asked ever so sweetly if she could have a sleepover with her brother.

"Sure ..." I mumbled as I hit send.

What she failed to mention, however, was that her dad had already given her the big N-O. And I hadn't checked to see if she had already asked her dad, which is standard operating procedure around our house.

To be honest, I really like it when they sleep together. It's sweet. I failed to see what the big deal was. But when Andy shed some light on the situation later, he explained that the reason Amy wanted to sleep with Jack wasn't really a noble, sweet, sisterly sort of thing.

Her motivation was fear. She was scared. She'd been watching too much Scooby Doo. And she did't want to sleep alone in her room. She wanted to be with someone...anyone....

The little guy across the hall in the dinosaur pajamas would do just fine.

Of course, Andy thought she needed to tough it out. (I know, I know ... he's right. Tougher is better.) But I felt the need to make an exception, which honestly is rare for me.

It felt good to me that in this case, for the first time ever ...

JACK COULD DO SOMETHING FOR AMY.

He needs that. She needs that.

Okay, who am I kidding..

I need that.

So when I explained that to my tough-love husband, it was an easy sell. He quickly and completely got it.

Amy and Jack had their sleepover. And in this case, the little brother in the dinosaur pajamas got to be the supportive sib for a change.

And we all had sweet, sweet dreams...

******

The Early Show on CBS completely got it this past week as well. Do yourself a favor and check out their piece on autism and its impact on siblings:

Watch CBS Videos Online

Autism: In Case You Wondered About My Feelings On Insurance Coverage

2008-09-16T09:33:00.006-04:00

In case you are wondering what I've been up to lately, check out this front page article from the Boston Globe.

To help in autism insurance reform efforts, please visit Autism Votes and sign up to receive updates. Then ask everyone you know to do the same. Every voice in every district makes a difference.

Back soon, I promise ...

Autism: Political Perspective

2008-09-06T09:58:00.004-04:00

Some day we'll walk in the rays of the beautiful sun
Some day when the world is much brighter
~The Five Stairsteps

It’s funny how the four-year election cycle can truly churn the way one views the political landscape. Four years ago when I was contemplating whether to vote for Bush or Kerry, I had zero interest in the issue of special needs. I have no recollection of it being mentioned.

I.Just.Didn’t.Care.

Four years and one autism diagnosis later, my perspective has been forever changed. Admittedly, I’ve turned into an almost single-issue voter.

And I’m not talking about abortion or immigration or foreign policy or any of that sexy business.

I’m talking about autism. I’m talking about special needs. I’m talking about research. I’m talking about services.

And, much to my satisfaction, the presidential candidates are talking about it too.

It started full-force for me back in June, when I read a Newsweek profile about Cindy McCain that included this reference to special education:

In 1972, Cindy left home for the University of Southern California. Her husband likes to say USC stands for "University of Spoiled Children," and Cindy looked the part. A cheerleader and sorority girl, she drove around campus in a gold Mercedes. But she took her studies seriously. Her father wanted her to enter the family business. Instead, she earned a master's degree in special education and returned home to teach kids with Down syndrome and other disabilities in a poor Phoenix neighborhood. "She took us all by surprise," recalls O. K. Fulton, then the school's principal. "She didn't have to work. Her dad had lots of money, but she went beyond what the job called for."

I had no idea. Score one for the R’s.

Later I read an interesting blog on Autism Vox about Mike Strautmanis, Chief Counsel to Barack Obama and the father of a child with autism. In the blog, Kristina Chew quotes Strautmanis as follows:

Barack Obama and I met, and Michele, when I talked my way into a job to be Michele’s paralegal, just about before I was going to graduate from college. Since then we have all been friends. I am married, have three children, one of whom has autism, on the autism spectrum, has autism spectrum disorder. The struggles I have had with my son as we worked through the healthcare system, education system, through all the services in our community, trying to find out what’s happening with him, how we can help him, Barack Obama and Michele have been right there with us.

Score one for the D’s.

Viewing the actual Democratic and Republican national conventions proved to be a jaw-dropping, standing-ovation- in-my-living-room couple of weeks. Prime-time television coverage of both conventions provided the following euphoric moments of validation:

Senator Hillary Clinton

I will always remember the single mom who had adopted two kids with autism. She didn't have any health insurance and she discovered she had cancer. But she greeted me with her bald head painted with my name on it and asked me to fight for health care for her and her children.

Former President Bill Clinton

I will never forget the parents of children with autism and other serious conditions who told me on the campaign trail that they couldn't afford health care and couldn't qualify their children for Medicaid unless they quit work and starved or got a divorce.

Governor Sarah Palin

And children with special needs inspire a special love. To the families of special-needs children all across this country, I have a message: For years, you sought to make America a more welcoming place for your sons and daughters. I pledge to you that if we are elected, you will have a friend and advocate in the White House.

Senator John McCain

I fight for Americans... I fight for Jake and Toni Wimmer of Franklin County, Pa. Jake works on a loading dock, coaches Little League, and raises money for the mentally and physically disabled. Toni is a school teacher working towards her master's degree. They have two sons, the youngest, Luke, has been diagnosed with autism. Their lives should matter to the people they elect to office and they matter to me.

To both political parties, I extend my heartfelt thanks. Autism and special needs have officially arrived on the nation’s political radar. Call me idealistic, but I believe awareness leads to understanding, which then fosters much-needed change.

I’m also painfully aware that actions speak much louder than words. To both political parties I say this as well:

I’m watching.

And waiting.

We all are.

***

To read the position of both presidential candidates regarding autism, please visit the Candidates Speak page at Autism Votes.

Autism: Fit For A Cause

2008-09-03T22:34:00.003-04:00

The October/November issue of Fitness Magazine features a wonderful article about 16 real women who are changing the world...

Hint: If you look hard enough, you just might recognize a certain forty-something autism mama.

Now go lace up your running shoes and hit the road!

Autism: Beaches

2008-08-28T14:54:00.004-04:00

Three years ago this month, Andy and I snuck away for a few days in Aruba. We hadn’t been away together a-l-o-n-e since Amy was tiny, so when we had the opportunity to spend a long weekend in Aruba, we jumped.

We purchased the trip from a friend whose brother had purchased it at a charity auction. Unfortunately, he couldn’t use the trip because his wife had died suddenly and he was left alone to parent their son, who had autism. (Funny how that word, even then, managed to creep into our psyche.)

I cried when my friend told me about her brother, so far away. Life seemed so cruel and unfair. It made me want to stop and reconnect with my Andy.

Wouldn’t it be nice if tomorrows had some sort of guarantee?

But one thing I know for sure is that life really is just an extended series of hellos and goodbyes.

So we flew off.

Little did we know, in just a couple of months, the word autism would become one that was very personal in nature.

I look at these pictures now and smile. I laugh about what different people we were then.

But then it occurs to me that that’s not really true.

We weren’t different people.

We just didn’t know ourselves quite as well then as we do now.

We loved each other then.

Still do.

Autism has a way of making you dig deep. Look at the world with a different sort of shades…

And yes, the last three years have been filled with dark times.

But they’ve also been filled with warm, sun-on-your-shoulders, sand-in-between-your-toes feeling moments.

Superdad Andy and I are sneaking off again this weekend. It’s been too long since we’ve had some time alone. Next week I start a new job, Amy starts third grade, and Jack starts some new in-home therapy.

Life is about to gloriously implode.

But for now, I’ll take the sand and one of those drinks with the umbrella in it.

And time with the truest of traveling companions….in so, so many ways…

Autism: Is It Just Me?

2008-08-26T15:01:00.002-04:00

Amy has a friend over today. It's her second playdate this week.

And I worry.

I checked in on Amy and friend this morning, just to make sure they were safe and happy.

And Amy was busy making a list.

Playdate Friend watched. Concerned Mom (me) asked, “Amy, what are you writing?”

“A list of Playdate Friend’s Webkinz, Mom…”

She huffed and scribbled on.

And I felt the overwhelming ickiness of worry.

I know. I know it’s silly.

But history has proven that I’m prone to counterproductive episodes of denial.

And Amy makes lists.

Lots and lots of lists.

She made lists of classmates with her other Playdate Friend earlier this week.

I throw away scraps and scraps of paper on a daily basis filled with Amy’s lists.

Did I mention that she also memorizes lists?

Just a couple of weeks ago when we were addressing the invitations to her birthday party, she wrote the address of every friend she invited … without looking up a single one.

She knew all of them by heart.

Is that normal?

Is my worry normal?

What the hell is normal anyway?

Her teachers all love her. Her grades are absolutely perfect. She’s an academic superstar.

But she’s quirky, that one.

And her quirky mom has no clue what normal is supposed to look like.

Adding fuel to the fire, I read a blog post recently written by a mom of a little boy affected by autism. Her older NT son was fine … or so she thought until he tried to commit suicide at the ripe old age of 9. It was then that he was diagnosed with Aspergers. Thank God he’s alive and is getting the support he needs now.

For now, I watch and wait.

And I wonder…Are my eyes wide open?

Or am I the one guilty of perseverating?

Deep in my heart, I know she'll be just fine. I'll communicate concerns to teachers, counselors and physicians. The village will take her.

Now excuse me as I take this next call ...

Miss Amy has yet another friend calling for a playdate.

Autism: Transitions

2008-08-23T07:54:00.003-04:00

Nothing endures but change
~Heraclitus

I first read the words written above in Coach Tim George’s history class circa 1980. Even though he was a coach, he had the reputation of being one of the toughest teachers in school. My freshman heart thumped as I watched him stroll into class on an oppressively hot August day. What would this horrible man do to my GPA? The window units hummed furiously, attempting to ward off the Texas heat. Without a word, he walked directly to the chalk board and scrawled this quote across the dusty green surface:

Nothing endures but change

It was a moment I will never forget.

Because I somehow I knew it was the truth.

Now mind you, I’m not one of those who remember every detail of my educational experience. My beloved husband Andy can still quote Macbeth and Hamlet and Wordsworth. The laws of physics and trigonometry are still easily accessed by his weirdly brilliant computer of a brain.

It possesses total recall….

Mine, not so much. Somewhere along the way, I grew distracted. I lived in the moment of morning sickness and tax returns and coffee and rush hour traffic and dirty diapers…

And autism.

Over the years, I’ve experienced the inevitable brain dump.

“Go ask your dad…” I mumble, over and over.

How did this happen?

Nothing endures but change.

This. This sunk in.

I didn’t lose it. Because, by God, I used it.

And now it’s late August. September is right around the corner. And I find myself thinking about change, wondering where it will take us next.

The months of August and September for some reason are the months of change for our family. Amy was born in August, Jack in September. We moved from Atlanta to Baltimore in September. From Baltimore to Chicago in September. From Chicago to Dallas in August… And finally, from Dallas to Boston in August.

We’ve been here a year now. And I find myself looking around. Assessing our situation. Peering down the road, hoping for a just a glimpse around the corner.

But of course I can’t see a thing.

So I drink in the beauty of my sleeping babies, tangled up in the covers of Jack’s big boy bed.

Amy starts third grade soon. She’ll be standing at the end of our driveway, waiting for the bus in a matter of days. She’s already chattering about the MCAS and obsessing over her class list, e-mailing back and forth with her teacher. Her pencils are sharpened. She's ready to go.

Jack has a fresh battery of appointments and evaluations to get through. Expert neuropsychs and educators will attempt to identify the change in him. Assess the progress.

Fine tune.

As for me, I lace up my running shoes and crank up my iPod. I kiss my sleeping husband as I rise with the sun. I look in the mirror and see a woman in her forties looking back.

How and just when did this happen?

I sip my coffee.

And thank God for the constants.

To Coach George and Heraclitus I would say this: You almost got it right.

Nothing endures but change …

With one beautiful exception:

Love.

Thank God for the Love...

Autism: Shameless

2008-08-18T17:53:00.000-04:00

Is it a bad that Jack is running around in his sister's old Hello Kitty underwear while my in-laws are here visiting from out of state?

The potty training is going well, but it's been a two-accident day and I'm fresh out of clean boxers with the gender-appropriate dinosaur print.

He's wearing an Indiana Jones t-shirt ...

I figure that makes it a wash, right?