Autismville

I Just Felt Like Running

2012-06-06T18:35:00.000-04:00

Running is the answer to every question.
~ Judith Ursitti

Random blog post I know, but Happy Running Day! For you non-runners out there, please, please continue to read. I know you might think that running is not your thing. But please .. hear a girl out. I only blog like once a year. Surely you can suffer through..

The nerdy girl who is writing this is a non-athlete .. a total band nerd. I was actually voted "Most Studious" one year in high school. I have no athletic ability whatsoever. None.

But even studious girls can be vain. Fifteen or so years ago, as I hit my thirties, I noticed that I was beginning to put on some pounds. So I made a New Year's resolution with a friend of mine and we decided to meet at 5:30 in the morning to walk. And walk we did. We walked, talked and started to become stronger. Not long after that, we heard of a 5K in town and decided we were going to go for broke and run it.

I never, ever in a million years thought I could run 100 yards, much less 3.2 miles. But we took our training slow. (We did the run one minute/walk one minute approach until we worked our way up to running 30 minutes without walking.) When I ran that 5k, it was one of the hardest things I had ever done. The last half mile or so I was convinced I was going to drop dead. Obviously, I didn't. I went home with a medal and a new found realization that even slow, nerdy girls can get out there and run.

Fast forward to today and I can honestly say that I don't know what I would do if I couldn't run. True, I'm at the back of the pack. The older I get, the slower I become. But who really cares. Running is my therapy .. my drug of choice.

The experiences are too many to list, but here is a sampling of my favorites:

I have laughed out loud while listening to David Sedaris podcasts.
I have belted out show tunes.
I have problem-solved. Work. Personal. Doesn't much matter. Time to think really helps.
I have seen coyotes and snakes and beautiful sunrises. (Never mind the road kill.)
I have experienced all four seasons.
I have seen the finish line of the Boston Marathon -- three times.
I have raised thousands and thousands of dollars for autism charities.
I have run with my daughter.
I have run with my sister.
I have lots of really cool t-shirts.
I always come home in a better frame of mind. (Well, almost always.) It's standard practice in our household that if I'm cranky, Superdad Andy raises an eyebrow and asks, "Ahem .. Did you run today?"
Bonus: I can still squeeze into my prom dress. It's tight, but I can get in it. And I'm old. Like almost 46.
I have prayed and prayed and prayed.
I have found peace in a world that is often stressful and overwhelming.

I suppose what I'm trying to say is that, if you haven't tried running, don't rule it out. You don't have to win or be some superstar athlete. You just have to put your shoes on and get out there. It could really change your life. It certainly has mine.

My next run is the Autism Speaks Half Marathon in September. It's a great race for a good cause right here in Boston. They are welcoming walkers and runners. Think about it!

To get started with a nerd-friendly running program, visit Jeff Galloway's page for beginners.

Three Little Words

2011-03-19T12:44:00.008-04:00

Thank you everyone.

Those three little words were Jack's first as a public speaker. (You can see for yourself right here.) And although for most of us, they come so easily, that hasn't been the case for my sweet kid.

He's spent three years working on those three little words.

As most of you already know, three years ago, our Jack was considered a "non-verbal learner." Fortunately, over the last three years, he has spent every school day in the tender loving care of Nashoba Learning Group.

Nashoba is a place like not other, with devoted professionals who know how to help children with autism reach their full potential. They are committed to sweet Jack and that beautiful mind of his. As he tumbles out of the car every day and grabs the hand of his teacher, I know in my heart the sky is the limit. He's in the right hands.

Not only do they work with children like Jack, they also work with adolescents and young adults with autism. The work is hard. The pay is minimal. But the staff at Nashoba continues to break new ground, believing in kids that pretty much everyone else has given up on.

To express my gratitude, I'm lacing up my running shoes and hitting the course of the historic Boston Marathon on April 18th. To be honest, I'm a little nervous about the run. I'm not getting any younger and have just a few short weeks to train.

But on race day I'll grab a Sharpie and scribble the names of those beautiful Nashoba students all over my arms and legs. When fatigue inevitably hits, I'll glance at a name ... and put one foot in front of the other heading up Heartbreak Hill. (It's nothing compared to the hard work they put in every day...)

You won't see Jack's name scribbled on my arms or legs. I'm saving a special spot for him right over my heart....

I hope you'll consider supporting my run for Nashoba. You can do so right here. Any donation, big or small, would be incredibly appreciated.

Or as my sweet Jack would say ...

Thank you everyone!

Because Everyone Needs to be Heard

2010-05-20T17:24:00.002-04:00

Love NBC's "Parenthood"..

Love this!

The Day They All Said "Yes..."

2010-05-19T06:17:00.007-04:00

I'm guest blogging this week over at the Autism Speaks Official Blog.

Please stop by and read my latest post, won't you?

Jack's Big Talent Show

2010-05-18T09:57:00.004-04:00

Jack closes out the Nashoba Learning Group talent show by thanking the crowd ...

Progress is a sweet, sweet thing...

Autism: The Joy of Christmas Present

2009-12-24T11:15:00.014-05:00

So this is the one that gets me...

Like a knife to the heart...

It.Just.Kills.Me...

And I feel terrible about feeling terrible. God, I do.

Those cherub faced, pajama-clad kiddos deserve their moment of joy.

Judge me if you want, but I'll admit it.

Yes, I grieve.

I love Christmas. I love my son. I do.

But December is particularly difficult, reminding me of the life that might have been.

You know the one... where we would all joyously deck the halls while baking cookies and drinking hot cocoa just after seeing the Rockettes and ice-skating at Rockefeller Center, but only after attending church, lest we land on the naughty list. The children would then nestle all snug in their beds ... yeah, you get the picture...

Our Christmas morn plays more like this: Andy and I will wake to the BANG! BANG! BOUNCE! sounds of Jack jumping up and down on his bed. His room is directly above ours, so we hear every bump and thump. (Yes, I like it that way... Andy, not so much.) Then Amy's door, directly across the hall from her brother, will creak open. She'll retrieve Jack from his room and will say sweetly something like "Merry Christmas, Cuddlers!" She'll coax him to try to say "Merry Christmas" in response as they thump down the stairs, hand in hand.

Once they hit the bottom, Amy will run for the tree. Jack will run for the kitchen, scrounging for gummies, or possibly to the family room looking for the stuffed monkey whose long arms he likes to stim with, oblivious to the whole holiday affair.

Camera in hand, the never-ending debate about which way to go will bounce around in my foggy head... Which world do I walk in? Do I ignore Jack's requests and celebrate with Amy under the tree? Or do I let her fend for herself, as I know she can, and make sure Jack gets what he needs.

It's not an exaggeration to admit that I've struggled with holiday-induced depression over the years since Jack's autism diagnosis. But this year, I've finally come to realize I don't necessarily have to choose a world to walk in. I live in our world. It's not necessarily Hallmark commercial-worthy... I do feel like a human ping-pong ball a lot of the time...but it's wonderful in its own head-spinning way.

I knew I had turned the corner the other day, when Andy asked me, "So ... are you in the Christmas spirit yet?" I smiled to myself, thought for a moment, and responded "Why yes. Yes, I am..."

It's strange. I can't attribute it to any sort of Christmas miracle per se. Rather, it's the accumulation of the everyday miracles over these past four years.

Maybe it's because Jack seems so happy and at peace this year. He's finally able to talk just a little. (Fifty-five words at last tally, but who's counting.) He attends an amazing school, where they believe in him and work to meet his individual needs. He receives the best of care from medical professionals who are dedicated to helping him.

And Amy. She's a thoughtful, intelligent, well-rounded kid. She asked for books for Christmas. Books! She's growing up. I couldn't be prouder of the person she is.

I'm thankful that my family is together. We're healthy. There is food in our cupboards. We are warm and safe and dry. From my vantage point, although it's far from typical, all is calm and bright.

I do still feel the knife in my heart on occasion. That's a given that I don't think will ever subside. But I'm thankful for the unique brand of joy and satisfaction I feel, living this life I didn't expect to live.

After all, isn't this holiday about a child born in a stable to a Jewish teenager who claimed to be a virgin? I'm sure Mary wasn't really living the life she expected either.

I love the way Luke put it when he wrote in his Gospel:

But Mary treasured all these things and pondered them in her heart.

Me too, Mary. Me too....

Autism: The Numbers Speak for Themselves

2009-12-22T10:13:00.006-05:00

It's one out of two in my family...

And we're far from alone...

Autism: Fast Forward Four Years

2009-12-18T13:38:00.015-05:00

Just four years ago, everything changed for my family.

Diagnosis: Autism Spectrum Disorder

Come again? I gazed down at my blue-eyed toddler, sucking his thumb.

God, I loved that kid. His smell. His smile. My baby. The last I would have.

No known cause. No cure.

He lounged in the red all-terrain, super-cool mountain buggy. I liked to jog with it. I had researched it on-line, obsessing about finding just the right configuration.

I loathed the stupid travel system stroller I had used with his sister. I was a novice when I ordered it. It was way too heavy. Way too complicated. This model was light. Easy to manipulate. I had it all figured out, this mothering thing..

Jack was happy sitting in it. He liked to go, go, go…Gazing out at the great big world whizzing by.

Scribble. Scribble..

I couldn't comprehend the gibberish the hurried neurologist was writing and the glib delivery of it all.

And I just knew he was dead-wrong.

No way.

No known cause.

No cure.

Not my baby.

Hot, heavy tears rolled down my cheeks and splashed on the page.

No known cause. That’s what he wrote.

Really? My head swirled in confusion. The words now smudged with my tears.

No cure. A life sentence delivered via a four by six memo pad.

No way.

Not Jack.

Autopilot on, I kissed Jack’s sweet, warm head and wheeled the fancy red stroller out the door of the examination room, navigating the cubicles, bathed in florescent light …

and despite my best efforts, fell apart.

Calm, collected, Judith ... Lip gloss still perfect. Standing up straight. Pushing forward.

Spontaneously combusting...

We would never be the same.

Dammit.

Jack had just been diagnosed with autism.

He would very likely end up institutionalized.

Institutionalized.

I just couldn’t bear it.

No known cause.

No cure.

$50 copay. Just come back in four months so we can tell you the same thing again.

No hope.

Your child has autism. Yes, it’s severe.

No known cause.

No words. No friends. No independence. No answers.

No cure.

No hope.

No. No. No.

Four years later, the red stroller hangs on the wall in the garage. Stroller-cruising has now been replaced with an IEP goal of “riding a two-wheeler with training wheels across the gym... twice…”

At age six, Jack can now spontaneously say “I want cookie.” He runs into the bathroom when the urge hits.

He eats a variety of foods. In fact, I almost drove my car off the road the first time I gazed into my rearview and saw him stuffing a chicken nugget into his mouth.

He gives juicy kisses.

He whispers … “I love you..”

He means it.

He’s grown bigger. And he's so much better. Thank God.

We've pushed through. In spite of the dire predictions of the neurologist, we've put one foot in front of the other, believing that there are answers. We've found treatments that have dramatically improved Jack's quality of life. We've assembled a team of educators, medical doctors and therapists who operate on never-ending hope, incredible expertise and a commitment to individuals with autism that is truly inspirational.

The heartless neuro has long been fired.

Jack's a happy dude.. See for yourself.

And four years later, according to a report released just today by the Center for Disease Control, the number of kids like him with an autism diagnosis has grown rapidly too.

Autism Spectrum disorder is now diagnosed in:

1 out of every 110 children.

1 in 70 boys.

750,000 children in the U.S. alone.

Yet some things remain the same

Still no known cause.

No cure.

If only the federal government could find the wherewithal to push through.

Stand up straight. Navigate.

Work to find the answers the millions of people impacted by autism need and deserve, not later, but now.

No reason to stop hoping. The sweet boy in the red mountain buggy is living proof of that.

Autism: Mail Call

2009-12-11T09:41:00.004-05:00

I'm passing this information along from my Rhema's Hope blogger, autism mom, hero, friend, Jeneil.

The autism community is a tight, crazy, wonderful group of diverse human beings. Our kids are affected in many different ways. We fight with each other. We celebrate the hard-fought victories.

And above all, we hold each other up....no questions asked.

I know you are all incredibly busy. I know it's the holiday season.

But please ...I ask you to please honor her simple request.

******

Friends, I have a request.

During our last conversation, my husband casually mentioned on the phone that there’s this huge box – like the size of our kitchen table – in his unit in Iraq, and every day it’s filled with mail.

But there has not been one single piece of mail for him.

Sniff. I’m. so. bad.!!!!!!
.
As you are dropping beautiful holiday cards or family newsletters in the mail, would you address one to him??? If sending a card, all you have to do is put a stamp on it and drop it in the mailbox (-no need to go to the post office).

Believe me, he loves this stuff. He hasn’t lived in his hometown since he was eighteen, and he still receives the town’s 4-page newspaper and every Sunday church bulletin. And he actually reads them. (I’ll be boxing all those up and sending them to Iraq).

His address:
MAJ Brandon Russell
STT/HHC/HBCT/
3 IDFOB Sykes
APO AE 09351

(He told me what all those letters stand for. HBCT stands for “Heavy Brigade Combat Team.” Ugh. Sounds… heavy.)

Anyway.

Can you help a sista out?

*****

Yes we can, my sister ... Yes, we can...

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.

****

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.

You tube

"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.

******

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.

You tube

(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...

******

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

******

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!

YouTube

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

YouTube

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.