Day 176: One of Those Days

I wasn’t having one of my best days, which is odd because the weather was gorgeous and I had my plans all mapped out: breakfast and coffee, relax, take Alex to playwriting, go to the gym, wait a while to pick him up, go to the Impact Store, grab some cheese bagels at Panera, then go home and relax. But somewhere along the line, I hit a snag and emotionally I sank. It sucked because I’d had that problem for most of the week, and it felt like I had to fight my way through every minute. I couldn’t even put my finger on the problem, other than the obvious “I haven’t been on a date, no one asks me out, and maybe I’m just not worthy”.

At one point my mom emailed me so I kinda let loose on how miserable it is being a single mother with challenges and no real hope for better on the horizon. I think my exact words were, “It sucks ass, let me tell you.” It did perk up a little when a friend posted a pic of Bradley Cooper, working on his next film and he gained weight for the role, and at the risk of sounding like a complete idiot, the man could be 300 pounds and I’d still think he’s beautiful.

I felt a little better when I posted this on Facebook

cheer up

…until a friend said, “And it’ll happen when you least expect it!” I saw that from the front seat as I waited for Alex to get out of playwriting, and I fought not to reply, “Lady, that ship has not only sailed but it sank, twice. I’m not holding my breath anymore.”

Instantly I had that “Leave me alone” feeling, which is ridiculous when you consider that I really hate being alone, for reasons already discussed above. I haven’t been on a date in over 18 months, unless you count that one disaster that sent me running for the computer so I could delete my online dating profile from that particular site. Not that he was a bad guy in the grand scheme, I suppose, but holy crap, I couldn’t have taken another 5 minutes with him. Of course, it also makes me wonder if I want to be with anyone. At this point I’m scared I’ve forgotten how to kiss, let alone to just be anywhere with someone else.

ANYWAY…

So I got Alex and his play seems to be coming along for next week’s finale, and we headed for the Impact Store, only to get bogged down in traffic that took 20 minutes to go a mile. I can run faster than that. 🙂 We finally got to the store, but by then I was already in a crappy mood, and then there was no place to park so I had to back all the way out to turn around and go to the rear of the store, and there was nothing there that interested me (which I took to be a good thing; if you don’t want OR need anything, you’re in a good place, right?). Then Alex loaded up one of my shopping bags with videos but he forgot the coupon on the grocery store receipt, so it wound up being $28. Not what I had planned.

We went to the nearest Panera but the parking lot was packed so I walked what felt like a quarter mile just to get there. I was behind a dozen people and I couldn’t see any cheese bagels, so I gave up and walked back out…only to find Alex was checking out all his movies and most of them were on my seat. Traffic was a bear again getting home, and partway there after some muttered epithets about another driver’s lack of driving skills, Alex asked in crystal-clear voice, “Mom, are you you having a bad day?” It didn’t hit me at the time so I just answered that yes, I wasn’t having a very good day, but it was okay because we’d just go to the Panera closer to home.

But then I muddled through the rest of the day and by 8 there was nothing on TV I cared about, so I went outside to knit and enjoy the last of the daylight on a beautiful late spring evening. I also kind of pissed and moaned to myself about how other people are out having fun and here I am, stuck at home, going nowhere. But when the light was gone, I went back in and cleaned up the kitchen and danced a little to some music, and decided to catch up on some TED talks online I’ve been meaning to watch, and I saw a brilliant one on turning the worst experiences in your life into what shapes your identity, and it was wonderful. So wonderful, in fact, that I had to stop it several times to take notes.

Then I saw this music video about autism, and it brought back to me what Alex had asked me. I’m blessed that he can communicate, and not just that he can communicate but he understands emotions. He’s not locked inside himself like some kids. He has a well developed sense of empathy, even if he doesn’t know what to do about it (but isn’t that most men?).

The other day in the middle of my shitty mood, I decided the problem isn’t that I’m not going anywhere; it’s that I’m not doing anything to get myself where I want to be. I posted on Facebook:

TIME TO STOP WISHING FOR WHAT YOU WANT, AND START MAKING THINGS HAPPEN.

That, in essence, was my problem. I wasn’t moving forward, but that was my fault because I wasn’t doing anything to push myself forward. I opened my current work-in-progress and started editing it again, even though I know one of the reasons I’ve been avoiding it is because of the emotions that are going to come to the surface. It’s not easy stuff to write. The funny stuff is easy; I can toss out one-liners or witty banter and it’s no problem, but dig deep for the feelings, and I’ve been balking for months already. I just tell myself, “I need to get back to that,” but I don’t, and I’m tired of it. I’m not doing anything to fix the problem; I’m just daydreaming about what I wish I had.

Well, screw that. I have to DO something.

Day 187: Two for One

The height of laziness: when you don’t post because you don’t feel like doing the math to figure out how far I am from the marathon. 🙂 But it’s starting to get closer. My son’s teacher (and running mentor) asked me last week how my training was coming. I said, “It starts in July, early August.” This being late May and almost Memorial Day, we’re getting there. A little intimidating to think I’ll be training All. Through. The. Summer. Then again, this is why it’s in November: because training in winter SUCKS.

So as it turns out, two 5ks in one day *is* entirely do-able. The first was at Dragonfly Forest, a camp for kids with autism spectrum disorders and other medical issues. Alex would be eligible for the Explorers Program, which is the one camp activity that’s not free, but it would be a week of sleep-away camp. The idea gives me shivers, and not just because of the cost, but at the same time, I know it might be something good for him. After seeing him at the Special Needs prom on Friday, I know he’s fine on his own. He enjoys being with his friends, and he has no problem finding entertainment, either from within or without. (Once he knew I was there, he practically begged me to leave.) It’s all things I need to think about.

The 5k was *awesome*! I didn’t know it was a trail run but it was SO pretty, and I was there with my bestie Karen, who did the 1 mile charity walk. (She’s not into running yet. Yet.) The weather was gorgeous, we had a great time, and I *made* great time despite it being a trail run. My new heel-to-toe stride, as opposed to using a midfoot foot strike, is SO much better. My knee didn’t tweak once and my legs felt MUCH stronger. I have to be careful because most running books advocate smaller strides but this is working for me. A few miles in I thought, “If I use this for the marathon, I won’t have a problem.” So if all the new stride gives me is confidence, that’s fine.

We then went to Downingtown for the Run for Ryan at Victory Brewing Co. Loved it! The weather again was perfect–just 4 hours from the first race–and the location was terrific. Plus my buddy Stacey showed up for it!! I haven’t seen her since her beautiful little girl was 18 months old (she’s now 3) so it was fantastic to get to hang out with her. I knew she’d hit it off with Karen, too; they’re both Tattooed Ladies! And really, Stacey’s just so cool, I can’t imagine her not getting along with everyone on the planet. Once I teach her to knit, she’ll be Perfect. 🙂

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

The funny thing is that Karen and Stacey were having such a good time on the 1 mile walk that I got there ahead of them. I’m still pretty pleased that I finished in 34 minutes and change, considering the hill on mile 2. As I was going down it, I thought, “Cool! I’ll make great time!” until I realized, uh yeah, I have to go back UP the thing on the way back. But I got to the bottom, let out a string of swear words, and then just focused on the road ahead and not on the incline I was climbing. Surprise surprise, it wasn’t as bad as I’d expected and before I knew it I was at the top, and I hadn’t stopped to walk (except at the water station). When I got to the finish line, I poured it on and shot through two people mailing it in ahead of me. 😉 I also collapsed on the grass just past the finish line, but it felt damn good. I really put my heart into it.

The food was great, and even though the lines were long, they moved quickly. The Victory lager was delish, and the portobello sandwich! Yum!! I even told the server, “Thank you for giving a vegetarian option!” He said, “We’re here to serve everybody.” Quite the cutie! 🙂 And I do have to say, there were a lot more good-looking guys at this race than most of the races I’ve been to. Beer, a road race, and eye candy. Trifecta!

Saturday the weather was great (as compared to Friday, which was one giant downpour) so I sat outside with my City Blocks wrap and picked up the stitches for the next section. I needed to do it in broad daylight so I could see the stitches in the black yarn section. It’s SO CUTE, I can’t wait to have it wrapped around my shoulders! Now to hope the yarn lasts. I’m not sure I have enough, and I know I don’t have enough for the edging, and the yarn company changed hands so if I order more, I don’t know if it’ll be the same thing. But where I am now is all decreases, so we’ll see. I love what I have right now, and at last I can add more rows to it!

Day 203: The Day After

Broad Street was a blast! Not without a few hiccups, like the rain and holy cow, the cold at the end, and doofy me forgetting the Phillies tickets, but not realizing it until I’d already sat in the parking lot for 90 minutes. Oh well, I caught a nap before driving home, and the highway wasn’t too crowded, unlike the 2 hour drive my friend Susan experienced, trying to get back to Downingtown.

I got an OAR (Organization for Autism Research) t-shirt on Friday at the expo and immediately declared it my race shirt. It’s not as loose and comfy as what I’m used to, but it’s exactly what I wanted, and of all the crazy things, it matched the pants and shoes I’d planned to wear. It had to be fate. The coolest thing of all was the lady yelling at me during the race, “Running for autism! Good job!” That made me feel like a rock star. 🙂

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Had a really nice time at the expo and after, when I took Ryan to the Reading Terminal Market for lunch. We passed a man who could’ve passed himself off as Steven Spielberg, but Ryan didn’t know who that was. As I ordered our lunch, he looked it up…and boy was he floored! He teased me about asking for an autograph but on the off-chance the guy wasn’t Spielberg, I didn’t want to make an ass of myself. He bet me he could get an autograph if he saw the guy again, so imagine his surprise when we finished lunch and guess who walked directly between us! And yet neither of us moved. 🙂

Ryan fries

I ran with Susan Scott Shelley, and bless her heart, I’m pretty sure she could’ve taken off on her own at any point but she stayed with me. We both held to the silent policy that “If she’s not walking, I’m not walking.” I was only 30 seconds off last year’s time, and I’d have beaten it if not for the great pics we took just before we got to City Hall. My cell phone takes damn good pictures, BTW, but MapMyRun didn’t accurately count the miles. Kinda disappointing to see the mile marker ahead and then see MMR tell me I’m .3 past it. Duh.

City Hall S City Hall C

I’m amazed that I’m walking like a human today, despite a shin splint and leg cramp  in my right calf. (The cramp has lingered off and on since the Love Run.) But watching the scale numbers going down has been terrifically encouraging. Hard to believe that as of Thursday I’ll be two weeks, very limited sugar, but I got groceries at lunch and almost drooled over the scent of fresh strawberries. Whatever I’m doing, it’s working, so I’m sticking with it.

It was fun talking to my mom afterward. She said my pre-race email was so upbeat that she sent it to her friends. Okay, I was excited (and trying to tamp it down so I didn’t burn out; after all, it was 5 a.m.), but I loved that I was carrying my causes with me. I had my OAR shirt, and I had a chain of purple yarn as a hair ribbon so I could take Mom’s friend Becky along on the race. Becky had run Broad Street before, as well as a few other races (including the Philly Marathon, I think), but she passed away from ovarian cancer last year, not long after I ran my first BSR. I wanted to bring her with me, and she was there. Her ribbon is hanging on the picture frame Mom gave me for Christmas, the one with photos from my previous races. It’s the frame that tells me she really believes in me and my running. That it’s not just a passing fad: this is a way of life, and something I truly believe in.

It was a great day, and the medal is awesome; it has sparkle! But it’s the 35th anniversary, so that was probably to be expected. (Though I didn’t notice it at first because I didn’t take the protective bag off it.) Susan didn’t know she got a medal for running the race, so I was delighted to see her get it. 🙂 The guy who gave me my shirt on Friday at the expo, gave me my medal on Sunday. Pretty nice!

To the organizers, the volunteers, and the sponsors of the 2014 Broad Street Run, a gigantic THANK YOU from runner number 36576! You guys ROCKED it! Hope to see you again next year!

finish me finish line signs 3 Walken Temple Owl Ghostbusters BSR sign

I Beat BS

Day 217: Building Up

My running addiction is hitting a fever pitch. The weather is right for running outside, and I’m on my last day of vacation. I want to try out the Schuylkill River Trail; it runs from Philadelphia to Pottstown, so that would give me plenty of space for long practice runs. But I’ve never tried it before and I’m a little nervous about going alone. The park is good too, but I go there all the time. I need a new view.

The Boston Marathon is tomorrow, and that’s adding to it. I’m seeing photos on Facebook of the race expo and the finish line and the teams, and all the excitement. I even saw pics of someone I know who got engaged in Boston last night. (I’m SO happy for her!!) It’s got me thinking I want to be a part of that.

Five years ago if someone suggested I go for a run, I’d have laughed. A year ago you never would’ve heard the words “I can” and “marathon” in the same sentence. Now look at me: I have four half marathons under my belt (or, really, hanging from the curtain rod in my room) and I’m signed up for the Philly Marathon. Today I Googled the qualifying times for Boston. If I waited ’til I turn 50, I’d need a 4:00 marathon time to qualify. Wanna hear crazy? My first thought was, “I can do that.”

Seriously, I said that. It would take a 9:16 mile, but I almost did that for the first mile at the Love Run, with Michelle running next to me. Then she took off and I went back to my comfort zone. But give me three years and some training and marathon experience, and I might just make it happen. Either that or the $4k fundraising requirement for the Doug Flutie Foundation. That might be more challenging than a consistent 9 minute mile. 😉

Yesterday I walked 6.2 miles, and it was tough. I think it was 6.2 miles; I’m not entirely certain. I did a 5k with a friend who’s never run a race before, but it was a “fun run” (not timed) so I walked it with her, though I did also keep a pretty quick pace. We did NOT stroll. I don’t think she believed she could do all 3 miles—she has a thyroid condition—but not only did she do it but we had a great time! I can recommend Run or Dye highly. 🙂 (I do have to have some words with the organizers, though, to please ask that they have freelance vendors NOT block the finish line. NO, I don’t want your overpriced pretzel, water or Gatorade.) She was so excited to have done it that she’s already looking forward to the next race, next month. Way to go, Karen!!

After that, I came home, cleaned up, and took Alex to the Impact Store, his favorite place on earth (maybe even more so than Disney, though we haven’t been there since he was 4). I told him we’d walk it together so that if the time came that he wanted to go alone, he’d know how to get there. It wasn’t an easy walk, let me tell you. The way there was mostly uphill, but he wasn’t to be deterred; he was going, no matter what. It took half an hour, and we probably shopped for most of an hour. I warned him not to pick out too many videos because we’d have to carry them home, but he did fill his bag (and put a few in the bag I picked out), as well as a VHS/DVD combo set. He carried it all without complaint, though I did offer to take the video bag for him; I know the unit was not a light thing. You should’ve heard his excitement when he hooked the thing up in his room and called down, “Mom, guess what? It WORKS!” So now he can watch DVDs and VHS tapes in the same unit. That’s one happy kid, made just a little prouder because he walked to the store AND installed the machine himself.

Happy Easter, all! Whether you celebrate or not, remember that it’s all about new beginnings.

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Tell Me Who I Am

This is a short story I gave to my son’s teachers with their Thank You gifts, on the occasion of his last day at middle school.  I don’t know where four years went, but we made some terrific friends along the way.  

Tell Me Who I Am

 There once was a young boy.  He didn’t look very different on the outside.  He didn’t stand out in the crowd, but he had a problem.  He was lost.  It was through no fault of his own.  Little by little he worked to find his way, but it wasn’t easy for him like it was for other kids.  He needed help, so he went to find it.

 There was a new building with people and rules.  He asked them, “Who am I?”  They worked with him, told him things, showed him what to do, and gave him rules to follow.  All the while he kept asking, “Who am I?” 

 “We can’t tell you,” they said.  “But we can show you.”  They smiled so he knew it was okay.  Over four short years, they watched the boy grow and change.  They knew who he was, and they knew he wasn’t lost.

 One day the people all got together.  They smiled at him and said, “You’re ready.”

 He was scared.  He said, “What do you mean?  I’m not ready.  I don’t know who I am yet.  You didn’t tell me.  Just tell me who I am, and maybe then I’ll be ready.” 

They shook their heads.  “No, we can’t.”

 He was sad.  “You still can’t tell me who I am, after all the time we worked together?  All the things I learned from you?  I only want to know who I am.  I’m still lost.”

 “No you’re not,” they said.  “The things we’ve taught you are the tools you need to help you find your way.  We’ve only taught you how to use them.  Because you’re special—not lost—they were a little harder to find.  Now it’s up to you.  You’re not done yet.  You must keep moving and learning and trying.  Use your tools and you’ll find out who you are.”

 He was scared.  “I will?” 

 “You will.  We promise.”

 He believed them, and he smiled.  He said, “Okay.  I’ll go, but I will miss you.  Thank you.   I’m going to go use these tools you’ve given me so I can learn who I am.  I will be even better.”  He walked away, in search of more tools with which to build himself, and people to learn from, and someone to share them with.

 They waved and wished him well because they loved him for who he already was.  He would never be lost as long as he carried the tools they gave him.  The tools he had all along.

(I apologize for not coming around lately, but I’ve been insanely busy.  I hope to do better but in the mean time, if you’re looking for me, check Facebook.)  🙂

“Burden?!”

Look out; clear a path.  Soap box coming through.  

I just learned this morning that at the last Norristown Area School District Board meeting, the CFO (now identified as Anne Marie Rohricht) called Special Education a “burden” on the school district’s budget.  To my knowledge, the District Superintendent, Dr. Janet Samuels, did not refute the statement.  It’s fairly common knowledge among families with special needs kids that Dr. Samuels agrees with that statement, insofar as the special education department at NASD has been hacked since she took over the school district.  The latest attack came two weeks ago with the unannounced firing of several special ed paraprofessionals in an effort to save money.

As far as I know, and I’d love to have someone clarify this for me, there isn’t a single school board member with a special needs child.  If there were just one, I could say the families of special needs children are being honestly (if not adequately) represented, but to my knowledge, there isn’t.  Safe to say you’ve heard the expression, “Taxation without representation”?  The board is looking at Special Education from the bottom line, and the bottom line only.  What they’re failing to see is the kids behind it.  Perfect or not, these children are our most precious resources, even if they’re considered by some to be a “burden”. 

Trust me, dudes, we didn’t choose this.  If I could go back in time and have a “normal” kid, even if it meant taking 10 years off my life, I’d do it in a heartbeat.  At least then I could trust that my son had a chance of growing up to be a productive, contributing member of society instead of a “burden” on it.  As of right now, because my 13 year old son has the intellectual capacity of a 6 year old, I’m not allowed to dieWho will care for him when I’m not here?  No matter what they say about Special Ed being a “burden” on the district, it’s nothing compared to the rest of my natural life.

Let’s also consider what it would cost if Special Ed weren’t available (and a federal law, if I’m not mistaken).  These children would be a lifetime “burden” on society.  At least with education, understanding, and guidance, they have a chance at a happy life.  Without it, we’ll be going back to the days of Willowbrook.  I lived on Staten Island and I saw it when it was still operational in the early 80’s.  I cry every time I think of the naked 8 year old child standing in an open doorway, watching as my bus passed by.  It’s an image I can’t burn from my brain (and I’ve tried).  If his mother could have seen the lonely, empty shell of a life her child was living, she’d have jumped off the nearest, tallest bridge. 

I’d like for the school board members to realize that regardless of anything else, when these children graduate (such as it is), they’ll no longer be a “burden” to the school district, but my son will be with me for the rest of my life.  As challenging as our lives may/will be, I have never once thought of him as a “burden”.  I’m insulted and disgusted to think that someone who, theoretically, should have my child’s best interests at heart considers him a “burden”.  Shame on you, Norristown Area School Board and Dr. Samuels.  Just you wait ’til the next election.  We will not forget.

My family made an effort to buy a house in Norristown solely for the purpose of keeping our children in the Norristown School District.  In 2002, we were delighted with the curriculum, the teachers, the methodology, and the people.  Now I’m just disgusted, and I’m sorry as hell we didn’t move out of the district and take our tax dollars with us.    We could’ve saved an enormous amount of money on property/school taxes, gotten a bigger house with a bigger yard, been much safer than where we are now (my car was broken into twice since we moved in a year ago) and been just as happy.   Seriously, Norristown Area School District was a great place before Dr. Samuels took over.  Years ago, I went on the Autism Society email loop, extolling the virtues of this place, how wonderful the autism support staff was (I posted a blog about this 2 years ago) and how thorough and child-dedicated the program was.  If someone asked, “Where should I go for the best services?” I waved them on over.  I may be responsible for at least half a dozen families moving here, just to go to the NASD schools. 

Now I’m just sick to my stomach.  Now it’s all about the goddamn bottom line.  “Burden”, my ass. 

I believe in karma.  I hope you do too.

Oh, and if you want a real kick in the teeth, here’s a picture of Dr. Samuels with my son Alex, taken last February after she praised him at the district science fair.  As Bob Dylan said, “They smile in your face, but behind your back, they hiss.”

The Good Old Days…

…weren’t always good, and tomorrow ain’t as bad as it seems.  (Gotta love Billy Joel.) 

Yes, I’ve been absent for a while.  Has anyone missed me?  (Is that crickets I hear?)  🙂  Things have been busy.  Knitting socks has turned into a borderline unhealthy addiction.  There are days I could keep knitting and skip eating, though right now that wouldn’t be a bad thing.  Mixed with this, I had a deadline to get my Golden Heart entry ready, and I got it in but just by the skin of my teeth.  Now to put a final polish on “Comfort Zone” before I submit to an agent I met in NJ.  I’m dying to work with her, but I want to make sure I put my absolutely best foot forward, and working on the GH entry, I found some areas of the plot I need to tweak further in.  I need to put the knitting down and plant BIC, HOK.  (Butt in chair, hands on keys.) 

So last night there was nothing on TV and John flipped the channels for a while, where we landed on “St. Elsewhere”.  I haven’t seen that show in years, and actually I wasn’t allowed to watch the early shows because it came on after my “bedtime”.  For a little while last night, I got to see what David Morse and Howie Mandel looked like with hair.  Honestly, they’re just as good-looking with hair as without, and hair or not, the talent is still there.  We also thought it was amusing that Denzel Washington hasn’t done TV since St. Elsewhere, but he didn’t have to.  Talk about a springboard to fame!  🙂 

We must’ve caught a show late in the series run, because Dr. Chandler (DW) was just leaving his career behind, and Boomer and Fiskus were also on their way out.  I’m dying to know if we’re close to the very last show, because I did see that one first-run.  At the time, I had no idea what autism was all about because nobody talked about it.  (Spoiler alert:  if you haven’t seen the last show, move on.  Otherwise, here’s a reminder:  the last episode showed that the entire series was all a product of the imagination of Dr. Westphall’s autistic son Tommy.) 

Tuesday was the 10th anniversary of Alex’s diagnosis, and as odd as it sounds, that was one of the proudest days of my life.  By November 1999, we’d gone through evaluations, exams, diagnostics, and even a quack neurologist; we knew he had a speech delay but there was also a possibility of autism.  All we needed was an official diagnosis to send Alex to specialized school and start working on reversing the problem.  It never occurred to me that this was a life sentence we were asking for, so I walked into December 1, 1999 blissfully unaware of what was ahead.

Now, one other thing.  Ryan had been diagnosed with hip dysplasia, so I was familiar with the ride from Staten Island to the orthopedist on Atlantic Avenue in Brooklyn, and truth be told, I hated that trip.  HATED it.  I could not think of anything I liked worse than driving the Gowanus, and now that I live in the Philly area, I can honestly say I’d rather ride a bike down the Schuylkill Expressway at 5 p.m. than drive a car on the Gowanus ever.  It’s that bad.  There were nights I’d pray for a safe trip, forgetting that the orthopedist could very well ask for more surgery (and that actually did happen later on, but I’m going off-track here).

The first pediatric neurologist (whose name I’ve forgotten, or I probably just blocked it out of my memory for my own mental safety) asked for a CT scan of Alex’s brain, but to put a very active 2 year old under sedation would require a horseload of tranquilizers, and he wanted no part of it.  I tried several times to put him in 4-point wrestling holds to syringe the sedatives into his mouth, with no success.  Finally the quack—uh, the neurologist prescribed the tranqs in suppository form.  Six of them.  At one time.  I effing think NOT.  I went back to the insurance company and said, “Give me someone else.  I’ll go anywhere.”  And they said, “How about this guy in Brooklyn?”  So I took the name and number and called the neuro in Brooklyn. 

The new neurologist was booked up; the next available appointment was December 28th.  All well and good if we weren’t looking at “a day lost is an opportunity lost”, so I asked if there were any openings, could she call me.  She said, “As a matter of fact, we had a cancellation today.  Can you be here at 3?”  It was 1:00 and I was in my sweats and a ratty t-shirt (white with blue flowers; I’ve since thrown it out), the kids were a mess and we’d just finished lunch so the house was a mess too.  I drew a deep breath and said, “We’ll be there.”  I took the address and froze:  Atlantic Avenue.  Oh shit.  I didn’t even have time to pray for a safe trip; I had to get the boys and me ready, in full winter regalia (because it was about 30 degrees outside), to get in the car and drive to Brooklyn, over the Gowanus, to Atlantic Avenue.  Probably the last thing in the world I wanted to do, but if I was going to get Alex his diagnosis so he could start school and turn this progressive disaster around, it was what I had to do.

And I did it. 

Driving through afternoon traffic like a live-action game of “Frogger”, we got to the office with 10 minutes to spare.  I peeled the boys out of their winter coats and kept them on my lap so no one saw I was wearing sweat pants in public.  The doctor called us in, and in 10 minutes of talking to both me and Alex, he said, “Your son has autism.”  I still think it was the most absurd moment in my life that I was relieved.  Finally our enemy had a name; we knew what we were fighting against.  It was like coming out of the fog and seeing a Star-Wars-type monster facing us, but at least we knew where the rockets were coming from.

I drove home in rushhour traffic, proud of myself for going toe-to-toe with my fears so I could get help for my son.  We’d have lost 4 weeks of progress if we’d waited for the appointment on the 28th, and when you’re dealing with autism and your child is already 3 years old and not getting EI services, every minute counts.  Sadly, I was still blissfully unaware that this was just the first of the many, many demons we had to face, probably for the rest of our lives unless someone comes up with an actual, bona fide cure for autism.  (She says with hands clasped in prayer.)

By the way, when you see me say “we”, that’s actually me.  I won’t give my ex credit for any of this because he didn’t do ANY of the legwork involved.  He did go on one school visit before Alex enrolled, but only because he wanted a day off from work.  All the exams, evals, and appointments, that was all me.  Neener, neener.  😉 

So here we are now.  Alex is 13 and over 6 feet tall; a far cry from the sweet, silent little green-eyed munchkin that walked into the doctor’s office ten years ago last Tuesday.  He talks, sings, writes, does math, fights me on homework and bickers with his brother.  Mostly all typical 13-year-old stuff unless you know that developmentally, he’s about 6.  I love him just as much now as I did then, but I worry about him more.  The future isn’t as far away as it was then.  I want to know what’s ahead for him.  I want to be sure he’ll be okay when I’m not here.  I doubt there’s a mother of an autistic child who doesn’t think she has to live forever to secure her child’s future.  It’s scary stuff.  I know some kids who’ll be okay; they have focus areas they enjoy where they can find gainful employment.  Given Alex’s love of movies, I’m sure he’ll have no problem working at Blockbuster (if they still exist in 10 years; “on demand” movies could phase them out).  The world will change so much, and I’m afraid he may not be able to change fast enough to keep up with it.  My greatest fear is that he will get left behind, and he’s such a sweet, kind, loving person, it wouldn’t be fair to the world to miss out on knowing someone like him. 

If Tommy Westphall can imagine all of St. Elsewhere, what kind of world does Alex imagine?  I may never know, but I bet it’s a wonderful place.

Blake’s Story

We spent the weekend in and outside Canton, Ohio for the Pro Football Hall of Fame enshrinement.  It was one big party and we had a wonderful time, but I’m almost glad to be home, especially since I scheduled myself for a day off afterward.  Eleven hours in the car, either as driver or passenger, will make that necessary.  In one day I went from an hour into Ohio, across PA from one side to the other, and into New Jersey and back.  I don’t want to cross another state line again until I absolutely have to.

On Saturday morning we had some extra time so we slept in, goofed off, and then went looking for food.  Unfortunately our hotel–which was WONDERFUL, by the way–was off the beaten path, so the choices were limited to McD’s, Subway, or the gas station/CircleK.  We drove Massillon Ave for a while but didn’t see anything.  (We did find My Sister’s Yarn Shop but didn’t stop.  Idon’tneedmoreyarnIdon’tneedmoreyarnIdon’tneedmoreyarn…)  Since we also hadn’t made any coffee in the hotel room and we missed their breakfast buffet, coffee was a key priority.  Finally we passed a shopping center with a nice little place on the corner called Blake’s Cafe & Cupcakery, so we decided to give it a shot.  After all, a muffin can be quite filling.  😉 

It turns out the place is fantastic.  It’s decorated like a Starbucks with a much more homey feel.  In the middle there’s a fake fireplace, two overstuffed leather couches and a chair around a coffee table; the volume on the TV was tuned down so as not to be obtrusive but enough to keep our fleeting attention.  The cupcakes looked scrumptious.  We placed our order and they said they’d bring it out to us.  I felt comfortable.

While we waited, I read the little brochure on the table and got an instant feeling of home from this place.  I hope they don’t mind that I’m retyping it but I wanted to share:

“Blake’s Story…

In 2000, we gave birth to our beautiful son, Blake.  Almost 3 years later, he was diagnosed with autism.  He was the one in every 150 kids…the one out of every 94 boys…to have the disorder.  And although we never would’ve wished to have a child with a disability, we can truly say that we feel very blessed to have him in our lives exactly the way he is.  He has taught us how to enjoy the simple pleasures in life and, most importantly, how to love absolutely unconditionally, no matter what.

If you’re a regular customer, you will undoubtedly see Blake in the cafe from time to time.  Though Blake is highly functioning, please know that he has a difficult time explaining his thoughts and may sometimes act differently or say things that are unexpected.  Please be understanding and compassionate, recognizing that these behaviors are simply a part of autism.

When we decided to open this business in 2009, we named it Blake’s Cafe & Cupcakery in honor of him, not only to draw attention and awareness to this disability which affects so many children and adults, but also with the hopes that someday he will (be) capable of running the business.  He often says that after he finishes elementary school, he’ll go to middle school, then to high school, then college, and finally, to Blake’s to work.  We pray he’s right.

He is the reason we are here for you.  Thank you for your business.”

Chalk up another day of wasted makeup.  🙂 

The food was fantastic and the coffee was heavenly!  I really REALLY wanted a cupcake but alas, by the time I’d eaten my buffalo chicken wrap and drank my coffee, I had no room left for a cupcake.  Same on Sunday when I made John take us back there.  (I was not about to leave the state without a copy of “Blake’s Story”, in a holder by the register.)

If you happen to pass through the Uniontown, Ohio area, please make a point of stopping at Blake’s.  I was disappointed I didn’t get to meet  Blake in person but it was the weekend, and he was probably doing what any 9 year old kid does on summer weekends.  I was also disappointed I didn’t get a cupcake, so get one for me while you’re there, please.  I fell madly in love with the place and I’ve already told a few friends, if I win PowerBall, I’m calling the owners, Derek & Marcie Williams, and asking about franchising opportunities.  I’m sure our Alex would love to work in a Blake’s, too.