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

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

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

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

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

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

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.

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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

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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