End of an Era

I was stunned to see the new online fan membership area, chock full of the same ideas I had presented to Rick just two weeks prior, there online without any notice from Rick or his team. There had been no indication that this was coming, no “thanks, but no thanks” from anyone on Rick’s team.

Without thinking much about it, I fired off an email to Rick himself.  After all, it had been him whom I had spoken to about my idea, him who had given tentative approval to it.  I was sharper than likely I should have been, asking him directly why he hadn’t told me of this plan, which had surely have to have been in motion, when I spoke to him in Atlantic City.  I waited for the answer, checking my email far too often in between volunteering at my daughters’ school and scouring eBay for a costume that would be appropriate for her kindergarten Halloween parade and party.

Rick must have forwarded my note to his manager, who called me later the same day to break the news.  I parked the kids in front of Noggin and retreated to our first floor bathroom to have what I anticipated to be a difficult conversation.

“You have to understand, Amy, that with all of the new things Rick is doing, like General Hospital and other TV appearances to promote it, that we can’t have a lot of different things going on at once.  It gets confusing to the fans.”

I listened, nodding slowly, although the guy in New York City couldn’t see me.  “I suppose I could see that,” I offered to keep the conversation going.

“So here’s the deal. The new area of the website is going to be handled by Jim.  It just makes sense for all the web stuff to be done by one person; then we just have one point person.  With the old fan club closing, it just makes sense to close the circle.  You can of course continue to inform fans of different things of course, but we won’t send you updates any more.  It’ll all be on the official website, and then you can take it from there….with attribution, of course.”

I was stunned.  Less than a year ago I was standing in front of this same man collecting accolades for my ability to rally fans and focus their efforts to accomplish great things.  Now I was being kicked to the curb.  “So…the street team?” I asked, struggling to keep my cmposure.

“Well obviously if we’re pulling everything together, that means fan based promotion, too.  So any contests, projects, initiatives will go through the official website.  You can still use your team to do things to rally the base, but we won’t be contributing any materials or incentives as we did before.”

The writing was on the wall.  I could hear Blue’s Clues on the TV in the playroom.  Steve was taking three random pieces of evidence and putting them together to figure out a mystery.  I stood in the bathroom, seeing it all clearly for the first time, seeing all the clues laid out in front of me.

I didn’t know why I hadn’t seen it all before.  This was the way it would end, of course.  First there was the phone call from Rick’s tour manager over a year ago, telling me that the website would be going in a new direction.   Then the new web guy had peeled away most of my duties. Of course there had also been the  anonymous chatter had come into my RS chat room calling me a “housemom” and complaining about how I’d run Rick’s site during my tenure. I had solved the puzzle, put together the clues:  my time had come and gone.

I told Rick’s manager that I understood. I ended our brief conversation by thanking him for his kindness the few times I’d met him, and that I wished him well.

Nov. 9, 2005

Just wanted to give you a head’s up on the note I’ll be sending out to the Shock Team tomorrow. Per our conversation several weeks ago, we agreed that more of the promotional efforts previously discussed on the team will now be moving to http://www.rickspringfield.com. While I think that the team will continue as a fan based online community, I wanted to let the group know that the change of focus is taking place. I have discussed this already with my regional managers and they are revamping their local groups as we speak.

I will continue to send out updates to the group as I see them posted to http://www.rickspringfield.com and obviously if you have anything you’d like passed along that will be done as well. Please know that my door is always open if you need anything.

If there is anything you’d like me to change in this letter, please let me know.

Thank you all very much for your kind words and support. It has been an honor to be trusted with the management of this team.

Amy
____________________________________________________________________________________________________

Dear Shock Teamers,

I wanted to write all of the street team members and give you a bit of a head’s up on the status of the Shock Street Team. After many conversations with members of Rick’s team and with the regional managers of the group, it’s been decided that the focus of this group will be changing.

For the last two years, the Shock Street Team has worked very hard with its membership to help promote Rick Springfield and his career. We’ve used a grass roots approach to help increase visibility of Rick and his music and career. We have gained press, radio interviews, radio adds, prominent displays in media outlets and booked shows. You, the members, have worked unpaid hours talking up Rick to passers by at malls, movie theaters, at work, on the internet, to disc jockeys and program directors; often with little incentive other than to give back something to the man whose music has a place inside of you. You’ve changed the focus of your fandom from “what can I get” to “what can I give” and it’s been astounding to watch.

As all of you know, Rick’s visibility has increased dramatically over the last year. Rick has a new team at the helm guiding the course of his career and big changes have already been put in place. Rick’s new management has vastly improved on the previous efforts towards promoting Rick and his career. Therefore, at this time, the Shock Street Team is pulling away from a promotional role as part of that team. For information on how you can continue to help Rick and his career, as well as the latest news on him, please continue to visit http://www.rickspringfield.com.

What will happen to the Shock Team? This mailing list will continue on to send out updates and help enhance your fan experience when we can. Your local regional groups may stay open, they may close, or they may move to a different location to be more of a discussion group than a working team. What that means for you as a member is that you will be directed less towards “work” and more towards ways to interact with each other and hopefully expand your experience as a Rick Springfield fan. Look for announcements from your regional managers for what that will mean for your local group.

The best part of being a Rick Springfield fan for me has always been the energy that is created by the fan community (obviously besides the music!). It’s why in my nearly ten years as part of it, I’ve tried to contribute in some way to moving that energy moving forward. The direction that what has been known as the “Shock Team” is entirely up to you, the members. You represent the most fervent, the most die hard, the most active of the Rick Springfield fan base. Most of you love interacting with other fans nearly as much as the music and the shows. When we were all experiencing Rick for the first time in the 80s (and 70s!) it was mostly a solitary experience. The great thing about being a fan now is the ability to share it. I’m not sure the direction the new Shock Team will take, but I hope that somehow it’s legacy will live on in new ways for fans to come together to share their energy and excitement for Rick Springfield.

Right now is a terrific and exciting time to be a Rick Springfield fan. With General Hospital, upcoming concerts, an overseas promotional tour, two new CDs in the last two calendar years and much more on the horizon, fans have more to look forward to with Rick and his career than any time in recent memory. You’ll want to talk about it, you’ll want to gather together both online and in person, and you’ll want to share those experiences. However you choose to do so, I hope you’ll continue on with the spirit of coming together for a common cause. So sit back, take a deep breath and enjoy this resurgence. All of what is going on now is what all of us came together to work towards.

It has been an honor and a priveledge to have worked with so many amazing people. I am proud of the work we accomplished, and I am proud of the team we created. Thank you to all of you who have been a part of it.

Sincerely,

Amy
Shock Team Manager

Know When to Hold ‘Em, Know When to Fold ‘Em

I couldn’t believe my eyes.  Two weeks after I’d had my conversation with Rick in Atlantic City, and handed over my detailed, well thought out business plan which delineated levels of payment for differing levels of exclusive content, I found a new web link on Rick Springfield’s official website.

“Access is official Rick Springfield advanced fan access! Exclusive member only content, presale ticketing opportunities, members only contests for prizes from Rick’s personal collection, exclusive multimedia content, members only merchandise, members only ‘Ask Rick’ feature, access to Rick’s online diary with text, photos and audio!”

I couldn’t believe it.  Just two weeks ago I had sat right next to Rick and given him my business plan with much of this written right there on the page.  He’d told me it was a great idea, but that he would need to run it by his managers in New York.  I hadn’t felt great about that, because it was so unlike his responses to previous ideas I’d had; before, it had always been more like “sounds great, let me get my manager to contact you about that and get you what you need to get it going”.  Still, Rick had new people in place who were making things happen; he’d been on TV this fall and was now returning to General Hospital in his role from 20 years ago, Dr. Noah Drake.  These new managers were serious contenders, and I appreciated that they might have a different way of doing things.

Still, as the days had passed and I hadn’t heard from management or Rick in response to my idea, I wondered what was going on.  When Rick was home from touring, a question would be answered quickly; he must check his email multiple times a day.  And since he’d practically begged me this summer to stay on in some capacity, I figured he would see my idea as the perfect way for me to be a part of things.  Ever since the new web guy had come along, the line had been drawn and the fan experience had always been seen as my domain.  Even after last summer’s tussle, Rick made it very clear in his emails that fan contests, thank yous, all the silly stuff that die hard fans love but isn’t really applicable to mass market appeal were my specialties.

I couldn’t even begin to imagine how this had happened.   Rick had agreed I should run the thing, intially saying  “I sure wouldn’t want it to go to anyone else.   It could get sooooo wacky,” via email.  I’d given him my business plan, which had much lower price points than what I was seeing on my screen today, but with most of the same ideas.  Two weeks had gone by and now this slick, new addition to the official site had gone live.  Had Rick lied to me that day, nodded and gotten away quickly because he knew this was happening?  Or had he been truly in the dark and given me the green light to something already being cooked up by someone else?

I would have to find out.  But regardless, I knew one thing for sure.  There was no way I would be involved in this thing, because the new web guy had made it clear that, for whatever reason, he wasn’t willing to work with me.  And since most of the perks of this exclusive fan area were the same types of things that the street team would offer, this new Access thing likely spelled the end of that as well.

Wow.  Just, wow.

Gambling in Atlantic City

“OK I have just a few minutes before I have to get back up on stage.  Let’s hear it,” said Rick Springfield, leaning back in the cushioned seat back.

My friend Helen had brought me here to the Borgata Casino in Atlantic City to speak to Rick.   It had been the first time since all the Katrina efforts that I would see him.  The last time I’d seen him, before Katrina, had been during his promo swing in New York.   Rick had promised to speak to me then about the new lay of the land on his team, but it never happened.  At each event I waited for the eventual touch on my sleeve by Rick’s manager or whisper in my ear by the keyboard guy telling me that I was supposed to wait over there so that I could ride in the van to the next thing, or go to lunch with them.  That chat Rick had promised in his emails evaporated before my eyes as I watched him leave the last event, a CD signing, with his entourage surrounding him.  An entourage, I had thought bitterly, that once had included me.

While I had been busy raising money for hurricane victims, Vivian quietly decided that she would be closing the fan club she had run for sixteen years.  I had known it was coming; Vivian was in her sixties, and it had been difficult for her to keep up with the technological leaps and bounds of the world she found herself in.  Her newsletters, which had been newsbreaking and the only source of information for longtime fans when she started her club in 1989 were now full of news fans had found on the internet months prior.  We had added a great deal to the club experience with the website, ticket sales and our mailing list, but it was still very hard.  When the new web guy had come on board, our cooperation for news and information between the fan club and the official website ended, and the focus of her work changed.  Used to being the authority on Rick Springfield news and information, Vivian found herself now in the position of trying to recreate what her club would be to fans.  She tried for a year of creating a CD and electronic version of her newsletter, but her heart never seemed to be into it.  What the club had meant and represented to her was over.  She was closing the club.

I could understand her feelings.  I hadn’t been in the fold nearly as long, but it was hard to watch the role you enjoyed playing being taken over by someone else.  Vivian’s closing of the club sent shock waves through the fan community, with the sharks looking for a way to seize the opportunity to start something new.  Vivian sent me email after email of this fan or that approaching her looking to take over, and we both laughed about how awful and obvious they were.

The only way to stave off the fan wave of splinter groups, I reasoned, would be to have something new in place quickly.  I asked Vivian if she would be upset if I broached the subject of a web based initiative, and she was fine with it. I had long thought of making an area of our website a paid area, a password protected area where fans could get their hands on a whole new level of fandom.  The things fans wanted these days were videos from Rick, anything straight from him (my Ask Rick columns were always popular on rs.com, and now the new guy had him writing a diary.  Rick had asked me, “What do the fans want me to write?” and I made suggestions to him).  Special memorabilia available only to them, ticket presales, exclusive photography, inside information, early access to new music.

I had bounced my idea off of my friends Helen and Renata, and they thought it was solid.  I sent an email to Rick with the basic premise and asked if he would be willing to talk to me more specifically about it in Atlantic City.  His response was:  “Yes I sure wouldnt want it to go to anyone else. It could get soooo wacky.”

And so I had a business plan in a folder, ready to give to him, sitting there next to him in the theater he would perform in later that night.  But somehow, I was hesitating.  It felt wrong, somehow, as if he was in a rush to get somewhere else; I hadn’t experienced that before with him. Helen, whom I had asked to sit with me, started talking up the idea, which bolstered my confidence, and so I opened the folder and pulled out the business plan.

“Wow, you’ve put a lot of thought into this,” Rick commented, glancing at the paper.

“Yes, I have,” I answered.  “You’ve always said I had my finger on the pulse of what the fans want, and I think this is what the fans want.  The days of the fan club are over, and I would never try to replace or replicate what Vivian offered to the fans.  This is more my niche, the web stuff, the things that I have heard over the last eight years of working on websites for you – ”

Rick stopped me.  “Eight years?  You’re joking.”

“No,” I smiled.  “I started doing the fan club site in 1996.  I didn’t start working with you until later, but I’ve been trying to give fans content that they would keep coming back to for eight years.”

“Wow,” Rick said.  I could see him glance over to the stage, where his manager was giving him a look that said it was time for him to get to work.  “OK, well let me take this and look it over, give it to the guys in New York.  I can’t imagine anyone will have a problem with it, but I can’t commit until I get the word from everyone on board.”

It should have been a red flag.  Rick had always made decisions for his own career, for himself.  I’d never had to get manager approval for anything before; Rick had always had them come to me to talk about a good idea and had them work with me, not the other way around.  But in the moment, I took it as a form of approval.  Rick gave Helen and I the requisite hugs and promised to see me backstage later that evening after the show.

“He really seemed to like it,” she gushed in between Rick belting out a few full songs to test the sound equipment.  “I think it is going to be really exciting.”

“You think so?  I’m not so sure.  Something just felt a little off.  I can’t say for sure what it is, but it isn’t a done deal yet.”

I had no idea, that day in early October, how right I was.

What We Did

Thursday, September 1, 2005:

I can’t tell you all how amazed I am at the response to the Hurricane Katrina Relief Project. I am sure you’re all watching the news as much as I am, and what I’m seeing makes me feel even more strongly than ever that we must do whatever it is each of us has in our hearts and talents to help these people as soon as we can. The stories we’re seeing look like they come from somewhere else, but they’re here, in our backyards, they’re our brothers, neighbors, family members…and I only wish that the tides turn soon on the hopelessness and chaos that has followed this devastating event.

I wanted to give everyone a little update and overview of what we have accomplished so far:
Nearly $6,000 donated already to various relief organizations
Many pints of blood already donated
Clothing and food drive organized for the Lake Charles, LA shows on 9/9 and 9/10
Donations of food, water, clothing to various relief organizations all over the country
I am amazed at overwhelming response. Thank you very much to everyone.

I have also gotten emails about children organizing car washes, donating their toys, organizing bake sales at their schools, water drives at their schools, working with their employers for donor matching and all sorts of great things. There are so many great ways to help. Thanks to everyone who is doing something, no matter how big or small, to make a difference. Nothing is small to someone who has lost everything.

Tuesday, September 13, 2005

Well it’s been an amazing two weeks to watch the Hurricane Katrina devastation, loss and glimmers of hope and recovery. If you’ve followed the journey on the news you have seen first hand the amazing images that I’m told don’t even touch the surface. The RS community has once again stepped in to try and help and we are amazed at the results.

The donation drive that has been ongoing since Wednesday, August 30 has raised $27,391.41 so far. Those that participated in the raffle drive to win RS related prizes, thank you. Thank you to everyone who donated prizes and to everyone who donated to the cause. We have stories of lemonade stands, car washes, blood donations (nearly 30 that we’ve been told about and we’re sure there are many more that we haven’t), volunteering at the Astrodome and many, many people who donated time, money and goods to help those who really need it right now.

Later press releases from Rick’s management touted the fan efforts for Katrina Relief which eventually topped over $40,000 in goods and monetary donations.  Fans worldwide donated blood, adopted families, pets and even helped fund the reconstruction of the Ronald McDonald House in New Orleans.  It was an all hands on deck effort that helped us not feel totally helpless in those dark days after Katrina hit.  My work on the Katrina relief efforts was by far the proudest I have ever been of any work I did in Rick Springfield’s name. The webpage I used to corral efforts (minus the .css file which seems to have been misplaced and gives the page an odd, amateur look) is still online at www.rickspringfield.net/katrina.htm.

Difficult Days

(this post will appear slightly chronologically out of order)

I wrote each of these to thousands of Rick Springfield fans in the aftermath of Hurricane Katrina.

Sent:  Wednesday, Aug. 31, 2005
Subject:  Katrina

I have spent my morning counting my blessings while running my two youngest children to their first day of school.  I spent the morning waiting for busses that never came, in the rain, explaining to a barely verbal special needs three year old why his bus never arrived and to a way too over excited five year old why hers didn’t, running each one to their different schools and bitching mostly the entire time.  At some point during all this, I had to stop and think:  you know what?  These are little things.  They have a school to go to.  They have a bus that will come…tomorrow.  They have food in their fridge and snacks to come home to and new clothes for their special days and a house to walk into that has a roof and toilets and water that runs and electricty too.

These are small things.

This is about humanity.  This is about human decency.  This is about our fellow Americans who are living in conditions (if they are lucky enough to be alive) that most of us can’t imagine.  I keep watching the New Orleans news pages and the warnings get more dire every time I pull them up.  I watched the mayor talk about telling his officers to “push aside the bodies and try to save the living”.

Those are big things.

Today was declared a day of prayer by Governor Blanco in Louisiana.  I can’t say enough prayers for these victims of this tragedy, of those beautiful towns and places that are no more.  I can’t wrap my brain around my anguish and fear.  I hope at the very least that all of us, in whatever religion or belief system you have, are offering up prayers.

Yes, we are challenging most of us here to do more.  I will probably upset some people by saying this, but it is truly my belief that many of us can do more.  If you can afford a concert ticket, a TDAY CD, a T shirt, a trip to see Rick, if that was OK to put on your credit card, but this isn’t, I think that you need a reality check.  I think that a good many of us have five dollars to spare.  I don’t want it, it’s not for me…watch the news for a minute and please tell me that you can’t afford another five dollars on that credit card.  I can’t truly wrap my brain around THAT mentality either.  If you’re sitting in a house with electricity, with a closet of clothes, some boxes in your basement of stuff you don’t have a use for anymore…I think that most of us could do something. These are our friends, our neighbors, our countrymen.  This could have been you, or me, or your brother, or sister, or aunt.  If it were them, you’d want someone to help.

That being said, there are so many non monetary ways to help.  Of course prayer, but also donating blood (it is SO important to do this).  Call a local hospital if you don’t have a local Red Cross.  You could call and see if they need help at your local hospital or Red Cross; so many of them are sending people down to the affected areas that they need replacements in your hometowns.  You could organize a water drive, or a food drive, or clothing drive at a local grocery store, WalMart or another place of business.  Use your time if you don’t have money.  Each of us has something to give.  Donate your services if you have a skill, and take the funds raised and send that along.

There are so many creative ways you could help.  Money is easy for many but not for all, but instead of using all of our creativity to find ways to attack each other and argue, how about trying to use that energy to find a different way to do something good?  I’m tired of the arguing.  I’m tired of people trying to find fault wherever they turn.  I’m tired of people never offering to help but always offering a criticism.  Why is this?

Take your talents and your light and your heart and put it towards the good.  Please.  Please stop hating each other and using good things to create bad.  You may not like this, that’s fine.  You may not like me, that’s fine too.  You may not like Ally or Anna or Vivian or the man in the moon.  I don’t care.   I don’t care if you send in a note to me about our drive or not.  I care that you please, find it in your heart, a way to do SOMETHING for these people.

I leave you with this quote:

“It is vital that people ‘count their blessings’ to appreciate what they possess without having to undergo its actual loss.”  Abraham Maslow.

I pray that each of you can appreciate what you possess and choose to share your life, light and love with those affected by this terrible tragedy.

Sent: Tuesday, August 30, 2005 5:04 PM
Subject: How to Help: Katrina Relief Efforts

Hi Everyone,

Here’s how to help:

  • Donation of money to Red Cross, Salvation Army or a host of other organizations.  There are even animal rescue organizations that need donations right now.  Money is the biggest thing because it helps the survivors with lodging, food, just about everything you can imagine.  There are links on our page to places you can donate to (both online, phone or in person).
  • Donation of goods and/or services to various organizations.  The Red Cross and other organizations desperately need donations of bottled water, diapers, baby formula, personal care items, first aid items, insect repellent, clothing.  They also can use your time in doing all manner of things….here in NYC they are asking for help just answering phones, but also putting together personal care packages and shipments that will be sent down to the affected areas.  Contact your local Red Cross or other service organization to see what they need.
  • Donation of blood.  There is already a blood shortage right now and there will be much of this precious resource needed.  You can contact any local hospital or Red Cross to see about where and when you can donate.
  • Red Cross is looking for volunteers who can be away from home for two weeks or more to be trained to assist in disaster relief.  Our local Red Cross is offering training in the next few days for those who can assist in this most needed way.

If you do any of these things, you can be entered into the Shock Team raffles that are being held for those who help this cause.  We have had lots of great prizes donated, from CDs and posters, to the rare RS Image Lamp that was sold on ricksmerch a few years ago, to a coveted meet and greet for two to be used at a future show.  We are still getting donations all the time (thanks to all who have donated items), so we will keep our raffles open until September 12th.  If you buy a ticket today, you’ll still be eligible for any of the added prizes.  Each $20 increment you donate gets you a raffle ticket.

Here’s how to enter:

  • Monetary donation:  It’s as easy as buying anything else online to donate to the cause.  Just send in your donation.  They’ll send you a receipt back.  Cut and paste that receipt (removing your credit card and personal info) and send that to me.  I’ll send you back a confirmation with raffle ticket numbers.
  • Donation:  Scan a copy of your receipt (either goods purchased and donated or your estimated value of donated items) and send that to me.  I’ll send you a confirmation of your raffle ticket numbers.
  • Donation of Blood:  Scan the back of your donor card (or just any paperwork you received when you donated) and you’ll automatically be sent five raffle tickets.
  • Volunteers for the disaster zone:  contact me for details.

Thank you to everyone who has written in with ideas and feedback.  We’re still adjusting this as we go along and hopefully getting some more things in place soon.  But I cannot encourage you enough…please…please help.

Even if you don’t want to participate in our particular initiative, I cannot urge you strongly enough to try and find a way.   A dollar, some old clothes, something you could sell on eBay…if you’re in your own home or your place of work and you’re looking at a computer screen right now, you’re luckier than millions of people down in the Gulf Coast.  Most of us have more than we think we do…please, I cannot urge you strongly enough to put yourself aside today and please help, however you can.

Remember, we have set up our page at www.rickspringfield.net/katrina.htm.

Never Normal

It was time for our monthly meeting at Michael’s preschool.   To keep tabs on Michael’s progress, his school scheduled family meetings once a month to update the parents on the progress of their special needs child.  It was at these meetings that they would make suggestions about what could be done at home, if there were any suggestions for additions or deletions to the program at school.  We’d had several last school year after Michael started the program, culminating with the Planning and Placement Team meeting, where all of the teachers, therapists and anyone else delivering services to my son would come in with suggestions for his program the next year.  It was at that meeting we discovered that our son would be going to summer school at age three, to make sure his progress would not stall with empty weeks during the summer.

“So it is official then,” I said with a heavy heart to the team assembled today.  “After your suggestion that we should see a neurologist, we booked Michael an appointment with a doctor in New Haven.  It took him about forty minutes to diagnose him as PDD-NOS.”  No need for an explanation of the acronym at this table; they lived every day knowing what all the different words on the spectrum meant.

My husband looked around the table.  “I know you’re not surprised.”

The speech therapist chimed in.  “No, we’re not.  We see it so much, we knew that he was definitely on the spectrum.  But this is a good thing,” she said encouragingly.  “The diagnosis is the first step to addressing his needs.”

The school psychologist nodded.  “So we’ll need the paperwork to put in his file,” she said.  “Can I take it now and get a copy made?”

I hesitated.  “I need you to answer me this question honestly.  Do we need to put the diagnosis in his records?  I mean, your program addresses his needs, not his diagnosis.  So his services won’t change based on putting the label on him.  I just worry so much about the labeling, and what that will do to him later.”

Michael’s classroom teacher spoke up.  “You’re right, his program won’t change.  However, we can be freer to add things to his program if he diagnosis is in his file.  It’s hard sometimes to get services when the budget gets tight; kids who don’t have a diagnosis on file will be the first to be removed from say, a speech therapist’s caseload, if we can’t point to a piece of paper and say this is why this child needs this.”

I nodded.

The speech therapist continued.  “And you’ll find as he gets older, especially when he leaves this preschool and goes into the regular student population, the diagnosis is even more necessary to get your child the services he needs.  We get some other funding for our program here, so we can offer more services to children who may or may not have a diagnosis, but once you get into the regular school, it is much harder when they don’t have a documented need.”

I looked at R.  “Well, I guess then that we should add it into his files,” I said slowly.  He nodded in agreement.

“Plus this will help you get coverage for outside services.  We definitely think that you should consider adding physical therapy and occupational therapy outside of school; Michael’s needs are so great that he needs more than we are able to provide.  Plus there are so many things, especially in the physical therapy, that we don’t do in a school setting that he needs to work on.”

I sighed.  How could there be so much my child needed that I didn’t know he needed?  I felt stupid, lazy, a bad parent for not recognizing it all before.  Michael was nearly four years old and already so far behind his peers.  How would he ever catch up?  “How long do you think,” I began, my voice catching.  “That if we add all of these outside things in, plus with the full day program you’re giving him, will it take for him to catch up to his peers?”

The speech therapist looked at me, very serious.  “I’m so sorry,” she said firmly.  “But your son will never catch up to his peers.  He’ll never be normal.  His brain just isn’t wired the same as theirs.  It’s not a matter of catching up.  The best we can do for your son is to get him to the point where he can maybe live independently.  But you need to prepare yourself.  He will never be normal.”

I wanted to run from the room, but I couldn’t.  This wasn’t a game, this wasn’t an argument. This was my son’s life, and it was time I grew up and started figuring out whatever it took to make the statement I’d just heard patently untrue.

It’s Official

It was September, and I was sitting in a small chair in a doctor’s office not far from Yale University Medical Center.

It had taken exactly one week of school before I begged the teachers and therapists for advice, help, something that I could be doing for my son that I wasn’t already doing.  He was starting to talk now, one word at a time, with a total vocabulary of maybe 50 words.  But he still wasn’t toilet trained at almost four years old, and showing no signs of being ready for it.  His meltdowns were increasing in frequency, and R and Z had struggled when I had spent three days in New York on the Rick Springfield promo tour.   Without me there to anticipate his needs before Michael hit the red zone, the days had been a struggle from this trigger to that one.  Keeping peace in Michael’s world was all about anticipating the triggers.  But how could we remove them from his world?

The therapists suggested we see a neurologist to finally get a concrete diagnosis on paper for Michael.  While his needs were clear and well documented, before the age of three no one would actually give him a specific diagnosis.  If we were to indeed get the diagnosis they anticipated, they could offer him more services and then insurance might cover out of school services as well.

I sat silent in my chair, watching the doctor go through the tests again with my son, the same tests I’d seen done on him a year ago.   The questions were slightly more advanced, but all in the same vein.  I watched with a quiet sadness as one time after another, Michael either didn’t respond to the doctor at all or responded inappropriately.  It wasn’t going to be good, I thought to myself.  I could feel the heaviness in my chest.

“Boy, they always are this cute,” started the doctor.  I must have looked puzzled, because he continued.  “Kids on the spectrum.  They are often the most angelic looking kids.  That’s part of why it’s so hard for them.  They look like everyone else so no one really understands how much they are struggling inside.”

I nodded slowly.  “So he’s on the spectrum then?”  A  year ago I didn’t know what that statement meant.  What a difference a year made.

“Oh, definitely,” he answered quickly, maybe too quickly.  He turned around his clipboard where he had been marking Michael’s responses.  Michael grunted at me, which was his way of asking for the Cheerios he knew were always in my bag.  I absentmindedly reached in and handed him the round, yellow container and handed it to him.  “Look, here’s the range of scores on the spectrum.  0 to 29 is normal. 30 to 50 is on the spectrum.  Down here, in the lower 30s, are where you’ll see Asperger’s or PDD-NOS.  Go into the 40s and you’re looking at full blown autism or low functioning autism.”

I gulped.  “And where does Michael land?”

“He has PDD-NOS, pervasive developmental disorder, not otherwise specified.  It means he has some of the classic symptoms of autism, such as the speech delay, the lack of eye contact, the oral sensitivity.   That’s here in the low 30s.  It’s good; he may end up being higher functioning with a score like that.”

My heart sank.  The therapists at school had mentioned Asperger’s.  Dr. Google had told me that outcomes for children diagnosed with Asperger’s were much higher than for kids diagnosed with PDD-NOS.  But I also knew that he wasn’t talking yet, and Asperger’s kids often talked incessantly, amazingly showing knowledge they should be too young to have, like knowing all 50 states before age 3, and being able to list them in alphabetical order.  That wasn’t my kid.

“So what does this mean for him?” I asked, looking down at his tousled, long blond hair.  Haircuts were a nightmare; he kicked the last stylist three times.

“It means you need to work harder to get his neurons to connect with each other.  The more you can do early, the better chances he will have.  You already have him in the school, which is a good place to start.  You might consider adding some therapies outside of school too, as much as you can afford.”  I made a mental note to ask the school for recommendations on what therapies would be the best to add to his already rigorous in school program.

“Will he ever be normal?” I asked.  “I mean, will he ever catch up to regular kids?”

The doctor looked at me with sympathy.  “His brain is disordered, not delayed.  It works differently than yours, or mine.  That will never change.  But yes, you can figure out how to work with his brain to help him learn.  He can learn.  And I’m sure he will.  As to his prognosis, we’ll need to see him back in a year and see how far he has progressed; that will give us a gauge as to his potential.”

His potential.  Meaning, would he ever be able to be an independent, typical adult.

I could literally feel my hopes and dreams, not only for my son but for my self as well, slip away.

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