Feeds:
Posts
Comments

Posts Tagged ‘autism’

Sunshine and Unicorns and Rainbows

Posted in Uncategorized, tagged , , , , , on September 27, 2012| 8 Comments »

I was going to entitle this post “She believes her farts smell like roses”, but I didn’t really think that would be appropriate.  That being said, there are people out there, in the real world and in the blogosphere, that truly believe that, in a metaphorical sense of course…or at least they are trying to convince you that it’s true – that anything she writes or says is the one and only way to parent an autistic child.  I read a post recently that shouted, “You’re kid has just been diagnosed with Asperger’s  – Congratulations!!!”  It was part of a running theme about how wonderful it is when your child has autism, that an autism diagnosis is all Sunshine and Unicorns and Rainbows, and how we just need to focus on the positives of autism and how if there is stress in your life because of the effects of autism, it’s never due to the autism, instead it’s the parents’ fault for feeling stressed and not loving their child enough.  In a nutshell that there is nothing difficult about autism in and of itself; that any difficulty is because as parents, we don’t love our kids; that if we get angry at autism, that is wrong and we are not accepting our child, that we are rejecting our child; that if we blame autism for some difficult moments, we are failing our child…

…that autism can only be seen as Sunshine and Unicorns and Rainbows.

***

I’m a sunshiny guy.  I love rainbows.  I believe that somewhere in the multiverse, a la Max Tegmark,  unicorns actually exist and dispense “magic” from their horns.  I believe that our attitudes can shape our reality.  I believe in the power of positive thinking.  I believe in the incredible magic of a welcoming smile and an outstretched hand.  I’ve been accused of being Mickey Mouse-ish, Peter Pan-ish, PollyAnna-ish – and I plead guilty, guilty and guilty, with pride.

But here’s the thing: it’s not always Sunshine and Unicorns and Rainbows.  Yes, there are positive aspects to being autistic, no doubt, but there are negative ones as well – just like any other human condition (and I mean that in the are you human? then you have a human condition! way)

My Brooke has autism and along with the autism comes anxiety, sensory issues, scripting, rigidity, social difficulty, teasing by peers, dismissal from adults.  Her days can be and often are hard.  She picks at her skin, she makes unsuccessful play bids, gets overwhelmed by words on a page.  She panics when a baby or toddler cries, she avoids our kitchen whenever someone is cooking…the list goes on and on and on….

…but also with the autism comes a steel trap memory and perfect pitch – she can sing a song back to you after hearing it just once; rule based thinking is allowing her to learn and extrapolate the grammar rules of Spanish just from watching Dora the Explorer; a different perspective allows her to solve certain problems more easily that her NT-peers; what she sees often cuts through the bullshit image we put out there for the world to see, allowing her to see who we really are at our core…again, the list goes on and on and on…

***

I had a friend years back who always insisted that everything was fantastic; everything was great!!!  Even when the shit was hitting the fan big time, she would insist that there were no problems, no issues…in the words of Han Solo:

…everything’s under control…situation normal…everything’s perfectly all right now. We’re fine. We’re all fine here now, thank you. How are you?

This despite meltdowns happening all around her.  I finally stopped asking.

***

Raising kids is not easy.  There are highs and lows, strung together with everything in between.  Being the parent of an autistic child, of any special needs child for that matter, I believe stretches that range.  I tell people that Brooke has made me a better father, husband and friend; that the lows are just that much lower, but the highs can also be that much higher.  Along the way, I think I’ve learned to appreciate the little things that so many of our fellow parents of NT children forget to pay attention to.  Brooke has shown me the way.  She stops, she notices.  While others are whizzing through the world, she is taking in its incredible beauty.

But to claim that there is nothing negative about being autistic or being the parent of an autistic child is, in my opinion, naive at best and extremely harmful and dangerous at worst. The authoritative claim that family stress only comes from the parent and not from what autism can do in terms of anxiety to a child? Misguided at best, hurtful and quite possibly negligent at worst.  What happens to the child whose parents start to blame themselves for everything and decide they simply can’t take it anymore and either walk out, check out or in a truly desperate act, take their own life? – all because when they found out about their child’s diagnosis, they were told that all they had to do was remain calm and that any stress their child was feeling was a direct result of the parents’ behavior – that any problems their child was having was because of them and their inability to accept their child.  I’m not a lawyer, but that sounds like dangerously negligent advice to me, especially when dispensed as if it were the one and only truth, not just the truth for one advice-giver.

There is no one truth when it comes to parenting…any kind of parenting.

We are all on our own path – what works for my family may or may not work for your family.  In fact, what often works for me doesn’t work for Jess and vice versa.  Each person with autism is a unique individual that in some areas has more in common with other autistics than those who are not, but in some cases have such differences that as a layman you would swear there is no way they would have the same diagnosis.  If every autistic person fit into the same description and needed the same kind of response from parents and care-givers, there would be no need for an IEP would there?

Listen, if you are living by the “Everything is Sunshine and Unicorns and Rainbows” philosophy and it’s working, well then more power to you and I wish you well.  Amen! That is fantastic, but understand that you’ve essentially proven only one thing: that Sunshine and Unicorns and Rainbows work for you and your family. Different strokes for different folks…but I would urge you to really take a look in the mirror and see if there is something, anything, that you are refusing to see.  A life that only sees the positive is a life with blinders on, in my opinion, and in the end it cheapens the wonder of the highs.

But if you ARE struggling with your child’s autism diagnosis; if you ARE asking WHY and HOW; if you DO get angry and sad, sometimes at the same time; if you do FEEL stressed please, please, PLEASE don’t read these posts by the Sunshine and Unicorns and Rainbows crowd and then think of yourself as a failure, as a non-loving mom or dad – don’t believe for a second that the pain you or your child feels is your fault, is anybody’s fault.

It. Is. NOT!!!

I am not saying that you shouldn’t read the stuff by the Sunshine and Unicorns and Rainbow crowd, I’m just saying you should accept their philosophy as something that seems to work for them.  If you think it might work for you, well, go right ahead!  But if you try it and it doesn’t work, DON’T BLAME YOURSELF!!!  It reminds me of the churches that say if you can’t pray away whatever troubles you have in life, then you don’t have enough faith.  Sometimes faith alone isn’t enough, because that which troubles you doesn’t go to church.  Sunshine and Unicorns and Rainbows are not the end all be all authority on parenting autism and if it doesn’t work for you, despite what they may lecture at you with unyielding assuredness, that’s okay.

Struggling, asking why and how, getting angry and sad, feeling stressed are all normal reactions to life in general.  Every parent goes through those feelings, even parents of NT children.  If you’re having a hard time, remember that you are NOT alone; that there are places you can go to vent, talk and find support; remember that all parents struggle; we, as special needs parents, may struggle a little more; we may worry just a little bit more.  I would think that not worrying about the future, whether it’s tomorrow or when our kids turn 22, is a sign of denial.

Struggling, questioning, feeling overwhelmed and stressed are natural – it all comes with parenting, whether your child is autistic or not; and in my conversations with NT parents, their struggles are just as big to THEM as ours are to US.  Those thoughts and feelings are what instigate change and progress and hopefully move the conversation forward.

Did your child just receive an autism diagnosis?  This is what I will tell you – it’s going to be okay.  The diagnosis doesn’t change your child.  He or she is still the wonderful, beautiful being you have loved since birth.  His or her diagnosis will open doors, it will give you a starting point, it will give you tools, it will let you know where certain behaviors are coming from and will hopefully allow you to communicate better with your child.  The road will be bumpy; there will be lows, there will be stress, there will be anger and sadness…

…but just remember there will also still be sunshine, there will still unicorns and there will definitely still be rainbows – and those moments will shine brighter than any sun, be more magical than any unicorn and be more colorful than any rainbow.

We are all on different paths, but we are all, ALL, in this together.

Read Full Post »

In Search Of…Katy Perry

Posted in Uncategorized, tagged , , , , , , , , , , , , on September 24, 2012| 1 Comment »

***

If you follow along on Facebook or Twitter, you already know that I’ve started a campaign to capture Katy Perry’s attention and then convince her to donate one of her blue wigs to me to wear at this year’s New York City Marathon.  I started a petition on Change.Org to create a central location to collect your signatures.   If you have a moment, I’d greatly appreciate your signing the petition.  The link is —>HERE<— (or you can click on the image below).  I’ll wait right here while you go over and sign it.

Sign Here!!!

Thanks.

But that’s only one prong of my three-pronged strategy to get Ms. Perry’s attention.

***

Part two also involves you as well, if you are willing.  Members of Team Up With Autism Speaks and I are putting together a Twitter campaign to send a steady stream of tweets to Katy Perry (Twitter handle: @katyperry).  I have no idea how often she reads the tweets that are sent to her.  Based on what I’ve seen on her twitter stream, she receives quite a few tweets – that happens when you have 24 million followers.  Ideally, at any given point during the day, for the next 8 weeks until New York, somebody will tweet to Katy asking her to donate a wig.  Obviously I will be tweeting her on a regular basis, but the more people that do it, the more likely either she, or whoever runs her social media will see it.  If you are up to sending her regular tweets (or even just one tweet), maybe it could look something like this:

Dear @KatyPerry, please let @luau run the NYC Marathon w/ one of your blue wigs for #Autism #Awareness – http://tinyurl.com/c8hf476 #lightluaublue

or

Dear @KatyPerry, please let @luau run the NYC Marathon w/ 1 of your blue wigs for #Autism #Awareness – http://tinyurl.com/c8hf476 #luauisafirework

If you copy and paste either one of those two, you will use all 140 characters while providing her with a link to the petition, with hashtags for Autism and Awareness , which means that the tweet will pop up when people search for either one of those terms.  The link to Twitter is here:

Copy one of the tweets above and then click on the birdie!

The first coordinated Twitter-fest is tomorrow (Tuesday the 25th) at 10:30AM.  Hopefully if hundreds of people send her the same tweet at 10:30AM (EST), it might get noticed.

***

Finally the third prong of my strategy may or may not involve you – do you know Katy?  Somebody out there has to know her, right?  or at least someone who knows someone, whose uncle has customer who once dated a girl who is the sister of a guy who went to school with a girl whose aunt’s best friend’s son dated a girl who is one of Katy’s dancers?  Somebody, somewhere out there could let Katy know, right?  Okay, seriously though.  I’m trying to work through some people who work with people in the music industry, but if you know someone who knows her…or better yet, if YOU know her, I would love the opportunity to pitch my request to her.

…because I would look much better in this wig…

…than in this one!

***

So that’s it – my three pronged strategy: petition, twitter-bomb and finding somebody who might know somebody.  If you have suggestions on how better to reach her, please email me (runluaurun at gmail dot com) – I am open to any and all suggestions.

Don’t forget, 10:30AM tomorrow morning (EST).  I appreciate any and all help…even if it’s just passing this or the petition link or the tweet along.  Whether I succeed or not, I have a feeling that this will make a great starting point for my motivational speech the night before New York.

Read Full Post »

Ballet

Posted in Uncategorized, tagged , , , , , , , , on September 22, 2012| 16 Comments »

Today I cried.

But they were happy tears…tears that have been a long time coming.

***

Five years ago I sat in a parking lot, with little Brookelette sitting in the back of the car, all dressed up in her leotard and tutu; her hair up in a bun; and I cried. I sat there in that parking lot, crying uncontrollably for a good twenty minutes. Brooke had just participated in her ballet class’s final dress rehearsal before the big academy recital the following two days. She hadn’t been able to follow along. Initially she had followed the instructions of the dance instructor, but very quickly decided she was going to do her own thing up on the stage. I was in the balcony recording it and felt terribly for the girl that was supposed to be her dance partner as Brooke started to run circles around the group.

To be clear, the moms that were there were not only understanding, but supportive. They all knew of Brooke’s diagnosis, and as I began to talk aloud of pulling her out of the performance, almost every one of them protested; but I couldn’t do this to the little girls up there on the stage. Yes, kids will be kids, and you never know what will happen when they get on stage, but I just couldn’t put my little one through the craziness of what those recitals are like and I did not want her to disrupt what her classmates had been working on all year.

After the rehearsal, I spoke to the instructor and told her I didn’t think my little one could handle it. Part of me was crushed even further when she agreed so readily. In retrospect, I don’t blame her.

After saying good-bye to the moms and the girls in the class I had gotten to know over the course of the school year, Brooke and I went back to the car, I buckled her in, gave her a snack, told her how proud I was of her, got into the diver’s seat and proceeded to cry…and cry…and cry.

It was probably one of my lowest moments as a parent ever. Had I let her down? Had I sold her short? Did I make the right decision? Over the next day or so, I took the video I had taken of her and made a “Brooke’s Big Recital” movie. I still can’t watch it without crying and so I don’t anymore. It hurts too much.

Flash forward a couple of years. We are talking to someone who runs a dance school and they mention that they would love to have Brooke in the school and they’ll even put in an aide just for her. I am so excited. This is just what she needs, right? With the proper support, she can dance just like all the other little girls in her class.

The dance instructor is absolutely amazing…the aide, not so much.

The “aide”, it turns out, is someone who was to be in the class regardless, and she has absolutely no clue as to how to work with my baby.

That’s okay, I think, I can give her plenty of pointers as to what works best with her!

My heart sinks as I watch the “aide’s” eyes glaze over as I try to explain how best to keep Brooke focused on the class and how best to redirect her. She could not care less. She has no interest in working with a special needs child. Honestly, I don’t like her, but I do not hold it against her. Some people are not wired to handle kids like my little one. The school should have put someone else in.

Despite the incredible efforts of the instructor, after several months of watching Brooke get lost in the class, I pull her. Again it is unfair to her classmates; it is unfair to the parents who are spending an exorbitant amount of money to have their children in the class to keep Brooke in.

Again, I sit and I cry.

All she wants to do is dance. Why isn’t there a place for her to do that?

At the beginning of the following school year, I meet a mom on back to school night. Her daughter is in Brooke’s class. We chat for a little while. I tell her a little bit about Brooke and her autism and even mention the whole dancing thing. She pauses and then mentions the Boston Ballet. I nod. The Boston Ballet always seemed to me to be the serious school – the place where future lifers went. She then mentions a program they are developing for those on the spectrum. My interest is piqued, but I’ve been burned before.

I tell her that I will definitely check it out…

…and then I don’t. I’m not ready. And for that I will kick myself for quite a while. Brooke doesn’t mention dance for a little while, but then starts asking again, “when will I be going to ballet class again?”

Oh, boy!

Finally, this summer, I decide it’s time to explore this Boston Ballet thing. After speaking with the mom from Brooke’s class and then the person in charge of the program at the school, I am convinced. They say all the right things – they’re working with Children’s Hospital, looking for parent input, using their 10 year experience of running an adaptive class for those with Down’s Syndrome. I am so hopeful.

There’s a tryout/placement class in August. Despite the dance saga being my baby, I let Jess go. She is home from work on two weeks vacation – there will be other classes I can go to, I am sure.

It goes fantastically and I am envious. A week later we get Brooke’s placement. Again, Jess goes to the first class and then the next. She sends pictures, tells me about how awesome Mr. Gino is and how well Brooke is doing…but I want to see it for myself.

In my head I still see the defiant kid sticking out her butt at the rest of the class:

Today I got to go to Brooke’s class for the first time this year:

She’s dancing…she’s moving…

…she’s performing for the class…

but most importantly…

she’s happy!!!

…and so today I cried and I cried and I cried some more…but it was so different from that day 5 years ago. Thank you Boston Ballet. You have healed what has been an open wound on my heart and soul for the last five years. To watch my baby dance so freely, so happily is pure joy. Thank you.

Okay, I’m off to go cry a little bit more.

Read Full Post »

Boston 13.1 – The Metaphor

Posted in Uncategorized, tagged , , , , , , , , , , , , on September 19, 2012| 7 Comments »

I often talk about how a race can be a metaphor for life in general – the highs, the lows, the laughter, the tears.  I often draw parallels between the difficulty I face during a marathon and the difficulties Brooke faces on a daily basis – the conclusion always being that if Brooke can fight through her day, every day, on a lifetime journey, then I can suck it up for three and a half hours over the course of 26.2 miles.

But Boston 13.1 brought a new metaphor to light for me.  As I hope most of you know by now, Jess tackled Boston 13.1 on Sunday as well.  She ran/walked it.  You can read her recap on her blog.  I could not be more proud of her.  She did it on absolutely no training whatsoever.  We had a little talk about it the other night – she said she felt like a fraud because she thought all of the “You Did IT!” praise was misplaced, comparing herself to someone getting through a workday with a hangover – self-inflicted difficulty.

But I saw it a different way.

Here’s the thing – Jess handled Boston 13.1 the same way she has taken on life as the parent of an autistic child; she did it with grace and a sense of humor.  When a lot of people would have packed it in (and the organizers of the race were literally packing it in as she passed mile marker 12), she kept going, and this is where the metaphor comes in.  When we, as parents of autistic children, find out that we are on a different path, we discover that we are not trained for the unique position we find ourselves in.

Much like Jess felt toeing the line on Sunday, we can feel overwhelmed, undertrained, and all alone when we first hear our child’s diagnosis.  But if we have the courage to cross that starting line, to move forward, and we manage to keep our sense of humor about us, we discover that we are, in fact, NOT alone; that there are so many others who are running the same race with as little training.

Is it a harder path? Sure. You will never convince me that being the parent of an autistic child is just as easy as being the parent of a neuro-typical kid.  BUT, are there at first unseen blessings along the way?  Absolutely.  I would argue that Brooke has made me a better father to my kids, a better husband to my wife, and a better friend to my friends than I would have been had I not suddenly found myself on this path.

The number of Team Up singlets on Sunday was both encouraging and disheartening.  I would never wish the harder path in life on anyone, but it was so heart-warming to know we were all there together.  And just because the path is harder, doesn’t mean that the path is impossible.

My wife proved that yet again on Sunday – it says so right on the picture.

So proud of you, babe!

Read Full Post »

American Airlines – the Official Airline of Todd Akin

Posted in Uncategorized, tagged , , , , , , , , , , , , , on September 7, 2012| 3 Comments »

Did you see the story about the young man with Down’s Syndrome who was denied a seat in First Class on an American Airlines flight because the pilot considered him a flight risk?

You can find the Huff Po piece —>HERE<— and American Airlines’ public response —>HERE<—.

I found this story to be horrifying, not only as the parent of a Special Needs Child, but as a member of the human race.  According to the news story from PIX 11 (link found at the top of the Huff Po piece) the pilot observed the young man and determined he would be a flight risk up in First Class.  Since 9/11, the doors to the cockpit have been remade to withstand attacks from terrorists.  How does a person with Down’s Syndrome fall into the same category as a terrorist?  If he is truly a flight risk, how is that they then moved him to the back of a United Airlines flight? I imagine that if a person is a flight risk they are just as much a flight risk in First Class as they are in Steerage.  How does this happen?

The answer is simple – ignorance.

The pilot made assumptions when he saw Bede Vanderhorst.  Whatever it is he thought he knew about people with Down’s Syndrome, he applied that to Bede, without so much as trying to understand any of the alleged behavior he says he saw him displaying, and made his decision.

This combination of ignorance and assumption is what keeps me up into the wee hours of the night – until there is a critical mass of awareness and understanding in the world of those with disabilities, ANY DISABILITY, how will my Brooke get by once she is an adult?  Will I always have to be there to explain to every ignoramus why his assumptions about her are wrong?  If this can happen to Bede, it can happen to my Brooke and any other child or adult who doesn’t fall under what others might consider typical.

Admittedly, there are two sides to every story, and we may not have all of the information available.    The Vanderhorsts have been very vocal in their complaint.  American Airlines on the other hand has handed out a simple statement and left it at that.  The airlines responded to a tweet of mine by directing me to the Facebook page.  Apparently the Department of Transportation is opening up an investigation of the incident.  I imagine that closed-circuit video of the gate will bear out the truth.

But I come back to the bigger topic at hand, and that’s the concept of making assumptions based on ignorance.  One of the greatest weapons against ignorance that we, as a caring society, have is awareness.  Awareness is the first step toward understanding and acceptance.  The thing is, this awareness thing, it IS working.  I see it in the halls of my daughter’s school and in the window panes of local shops.  People, every day people, are starting to shift.  Sure there is going to be the inevitable asshole who will find pleasure in making fun of those he doesn’t understand, but to some degree, I see change happening…slowly, but happening.  Heck, President Clinton mention both Down’s Syndrome and Autism in his speech on Wednesday night at the DNC.  Progress – it’s happening!

But what really frightens me is that some people who are in positions of power, say like this pilot or a congressman speaking on women’s reproductive rights, will decline the opportunity to truly understand the science or psychology of a situation because they do not want to appear weak.  They will ignore facts and push on with what they “believe” is right without listening to what’s really going on.  Guess what?  That is the action of a weak minded, weak willed person who is afraid that reality could shatter their long held views of the world.  Declaring something with authority doesn’t make it right – in fact, it is often a sign of inner weakness.  Yes, Bede’s mom was sobbing and his father was in shock.  Yes, sobbing and shock don’t lend themselves to allowing a person to be particularly articulate, but it is the duty of our leaders to lead and to listen empathetically  to those in pain, not bristle and put up walls.  It takes a strong man or woman to open themselves up to the possibility that they are not only wrong, but grossly wrong.  The bittersweet thing of it is that I find that strength more in the neighbor, the friend’s mother, the grocery bagger than in those who hold positions of power.

If we’re going to move forward as a nation, our leaders, both nationally and at the business and community level, are going to have to learn that admitting they are wrong, no matter how hard it may be, is not a sin, and is often the path to a better place.

Read Full Post »

New York – Here I Go Again

Posted in New York City Marathon, Uncategorized, tagged , , , , , , , , , , on August 27, 2012| 2 Comments »

I finally pulled the trigger last week – I officially signed up to run the New York City Marathon for the third year in a row.

And for the third year in a row, I will be running as a charity runner – raising funds for the organization that is particularly close to my heart – Autism Speaks.  I had held off signing up for so long this year because I was busy recruiting many of you to run Boston 13.1 on September 16th (also for Autism Speaks – If you haven’t signed up to run, there are still spaces available.  Sign up —HERE—).

I could go on and on about why I am running and why I need your help, but it really comes down to this:  Autistic people like Brooke face a wide range of challenges both as children and as adults.  Autism Speaks tries to take these challenges on from several different angles – funds raised go to scientific research, social services, development of employment opportunities, and raising awareness.

They work tirelessly to make the world a better place for my Brooke and all autistics who are both like and not like her – that’s how wide the spectrum is.

So I come to you, hat in hand, asking for your help.  I have agreed to raise $3000 by November 4th (that’s on top of the $500+ I’ve already raised for Boston 13.1).  Whether it’s $5, $10, $20, $50, $100 or even the whole darned $3000, I’m asking for your help.

Every dollar counts.

Last year, because you put Jess & I over $10,000 for the Boston Autism Walk, I dyed my hair blue for the marathon.  I figured it would be pretty boring if I did the same thing again, so I’m going to mix it up a little while maintaining the theme.  This year, if you get me to my goal of $3000 by October 15th, I will run in this:

It should make me easy to spot along the way.

Now, if you all really go crazy and get me to my goal of $3000 before September 15th (that’s only a few weeks away), I might just be convinced to run in this:

Come on…you know you want me to do it!  And the truth is, I do owe Katy Perry something for nudging me in the direction I find myself (free training session for you Katy should you ever find yourself in the Boston area).  If it does come to this one though, I may reserve the right to put it up in a ponytail if it gets too hot.

Speaking of Ms. Perry, you may know I am currently working toward a CSCS certification that will allow me to officially work as a personal/team trainer.  My plan is to be certified by the end of March 2013.  How is this significant?  For every $25 donated, I will put the donator’s name into a hat (so $100 would be 4 entries).  On November 1st, I will have Brooke draw out a name.  The winner will receive (after I am certified) 3 training sessions that will include on top of that a full nutritional and physical intake evaluation and a long term program to get you where you want to be.  Hopefully, after three sessions, you will still want to work with me!

If you live outside of New England, I could use some credit card miles to fly to you for a weekend or we could do something via Skype – we can work out those details later.

Okay, so here’s the link to my donation page – http://events.autismspeaks.org/nycmarathon/runluaurun – donate early and often, and remember, every $25 buys you one raffle ticket ($200= 8 tickets!).

You know you want to see me running through the streets of New York with a Katy Perry wig!

Read Full Post »

Boston 13.1 – Just Do It

Posted in Uncategorized, tagged , , , , , , , , on August 9, 2012| Leave a Comment »

Boston 13.1 is a little over 5 weeks away.  Team Up with Autism Speaks has 270 runners/walkers running/walking themselves into race day shape.  Are you one of them?  If so, I applaud you.  Thank you for taking your time and energy and devoting it to something that is so close to my heart.

But if the answer is no?  Well, why the heck not???

If one of the reasons is that you aren’t in shape and can’t handle 13.1 miles, I am begging you to reconsider.

13.1 miles is a daunting distance.  Calling it a half-marathon makes it sound even scarier, but I want to tell you something.

Finishing 13.1 miles has more to do with what’s between your ears than what’s in your muscles.  You may think that you are physically unable to cover 13.1 miles, but I will tell you that in most cases you are wrong.  And remember, this is a running and WALKING half-marathon.  They welcome and accommodate walkers!

If you can walk and are in mildly good health, YOU can cover 13.1 miles.  The marathon?  That’s a different story.  26.2 miles will physically take you to empty before the finish line if you are not careful, but at half that distance, it’s more about overcoming the mental hurdle of that word – half-marathon.

For almost all of us, the point of the race is not to finish first.  There are only a handful of people who can truly claim that goal.  No, the point of the race for you and me is to have the best time we can and finish – it doesn’t matter if you get there by running or walking or some combination of the two.

The best time – that can mean many things to many people and does not necessarily mean “clock time”.  The best time I ever had during a marathon was at last year’s New York City Marathon.  I finished in my worst time ever, just over 4 hours, but I had the BEST time ever as you can see —>HERE<—.

Do you have the mental strength?  I know you have the physical ability; and I’m pretty sure you have the mental fortitude.

***

Whether you are a novice runner, an avid marathoner, or a power couch potato – I want you.  I need you.  My daughter Brooke needs you.  My family needs you.  The entire Autism Community needs you.  You can read my pitch to you from back in March —>HERE<—.

2012 Team Up! with Autism Speaks benefits include, but are not limited to:

  • Race Entry (which means you don’t need to worry about the $65 – $100 entry fee)
  • Team Up! with Autism Speaks Runners Tank or Long Sleeve, and an Autism Speaks dri-fit hat
  • Pre-Race private team dinner for you and a guest, location TBA
  • Customized fundraising page
  • Team Up! Facebook Page
  • Virtual Coaching by a certified running Coach Chris Fales
  • Fundraising Tips and Opportunities
  • Dedicated Autism Speaks staff
  • Race Day Cheering Section at Mile TBA
  • Race Day Team Up! Tent for pre and post race usage
  • Team Handbook- In a PDF form and downloadable for reference at anytime.

You get all those things, plus (if you’re local) Sunday training runs with me, and double-plus I’m bringing Jess from Diary of a Mom along to the Team Dinner (she’s the real attraction and is gonna be walking the 13.1)!

***

September 16th is a little over 5 weeks away.  Even if you can’t train regularly between now and then, you CAN sign up to walk the distance and support a wonderful organization – an organization that is making an effort to approach this autism thing from so many different angles, both scientifically and socially.  Are they perfect?  No way.  Do they have faults?  Sure.  But who among us, both as individuals and as organizations can claim perfection?  No one.  Autism Speaks is working hard to make the world a better place for autistic people young and old.

***

So now we’re left with the fund raising issue.

$500.

Though small compared to some charity race entries, $500 is still a lot of money.  The good news is that you still have 37 days left to do it.  That’s less than $95 a week, less than $14 a day.  Raising the funds may be challenging, but with a little creativity (did you see my blue hair for New York? Money raiser!!!), it can be done with room to spare.

So please, PLEASE consider joining the team.  We need 130 more runners to fill the 400 slots we promised.  If you can’t do it, you might know someone who might know a guy whose brother has a girlfriend whose uncle has a co-worker whose son’s best friend has a sister that is trying to figure out how she could run a half-marathon in Boston in September while raising money for Autism Speaks – please pass this post along.  The more people that see this, the more likely we will find runners who want to join us but just didn’t know it yet.

If you are from out of town, Boston is beautiful in the Fall and you can use the race as a springboard to doing a little touring of New England.  Football season will be just starting – you could run/walk the race in the morning and then watch the Pats destroy the Cardinals in the afternoon at Gillette or you could come into town earlier in the week and catch a Red Sox-Yankees game at Fenway – shoot!  I’ll come out and have a drink with you beforehand!  Any way you slice it, the trip would be fun and for a good cause.

I hope to see you on the 15th at the team dinner and then on the 16th on the course.  I’ll be bringing my camera along so who knows, maybe you’ll end up here on the blog or on the Run Luau Run Youtube Channel!

Join the Team —>– HERE –<—.

Because I’m pretty sure, with the right support, Brooke and those like her can walk on water…join the team today!

Read Full Post »

Bitter Sweet

Posted in Uncategorized, tagged , , , on July 28, 2012| 52 Comments »

I just got back from the bookstore. Brooke has been a bit of a mess for the last 48 hours because she had been unable to find one of her favorite books. It got to the point that bedtime last night got a little hairy. This afternoon, while hanging out in the den, she started crying. I asked her why she was crying and she gave me one of her scripted answers. I dug a little deeper and she said she was sad that she could not find her book. I became determined to find it. After 20 minutes of tearing the house apart, Jess made the ingenious suggestion that I take Brooke to the bookstore and buy another copy…the $7 would be money well spent.

And so we went to the bookstore.

And we picked up a copy of her book…that is, after the nice, well meaning info desk lady helped us find it.

“You do know this is a little kids book, right?”

Yeah, believe me honey, I KNOW!!! “Yeah,” I simply sighed.

“I mean REALLY little kids.”

I suppressed my flash of anger, calmly took the book from her and went off to go pay.

Brooke could not have been happier and she began reading her book in the car and asking me questions about it:

Is it so wrong that as happy as I am that she has her book and is reading, that a part of me is bitter too that the book is this:

I know we all go at our own pace…we all do…but sometimes it’s hard to remember that.

Read Full Post »

Vigil

Posted in Uncategorized, tagged , , on July 25, 2012| 54 Comments »

20120726-100206.jpg

Even as I am having a completely inane conversation with this mom I just met I am watching. She has no idea where her child is or what her child is doing, and the truth is, that is okay. Her child is 9, maybe 10 years old, and despite being a bit of a spoiled brat, can handle herself just fine with all of the other kids here.

Meanwhile, I am watching, half turned away from the droning mom, half listening to what she is saying, fully aware of where Brooke is, what she is doing and gauging the immediate potential pitfalls that surround her.

Brooke starts to move toward another mother and her baby, I take a step away from verbal diarrhea mom before Brooke moves in a different direction. I relax my shoulder and nod at some senseless question the yapper has asked. She says, “right?” with a lilt at the end, unawares I have no idea what she has asked me, but thinking I must be in total agreement.

I finally excuse myself as Brooke starts to wander off to a new location.

“So good to see you, thanks for listening” she says, “I feel much better about that situation.”. I nod again. I have no idea what she is talking about.

***
Katie wants to show me something.

“Look,” she says, “watch me do this.”. She dives under the water to perform some sort of gymnasticky move, but I am only half paying attention. I am watching Brooke as she bounces through the water in a different part of the pool, weaving her way in and out of the crowds of kids.

Each time she bounces particularly close to another child, I can feel my body move slightly toward her, at the ready to help facilitate conversation or diffuse inappropriate behavior.

“Did you see it Daddy?” Katie asks as she pops out of the water.

“Very good,” I say, not sure what she did or how well she actually did it.

“How would you rate it?”

I pick 7 because it gives me an opportunity to ask her to do it again to see if she can do it better, never mind that I didn’t see it the first time. She looks disappointed.

“Do it again,” I say. This time I fight the urge to turn my head toward Brooke the moment she goes under the water and watch as she does a perfect underwater somersault. She pops back up.

“How was it?”

“A 10 baby, definitely a 10.”

She beams with pride and says, “now watch this!”

The moment she goes back under water, I frantically scan the entire pool for Brooke. It takes me less than a second to find her, but it is the longest sub-second of the day. She is working her way to the edge of the pool to go down the slides.

“How was that Daddy?”

“Pretty good Kat! Listen, I’m gonna go over and make sure Brooke stays in the line for the slide, okay?”

“Oh-kay,” she says, making no effort to hide her dissatisfaction.

***
I envy parents of NT kids sometimes. Sure, they have their worries about their children, but honestly, when I’m at the pool or the park or a birthday party or any place with a plethora of children, I see them turn off their Kid-dar (closest thing I could come up with for Kid Radar). They fall into deep conversation because, well, they can. Their children can navigate the social seascape with little or no problem.

Meanwhile, I watch. I always have one eye on Brooke, and if I need to take my eye off for more than a second, I am fighting the urge to turn back. I can’t give my older daughter full-attention for Christ’s sake. Even when Brooke has a playdate with an NT friend, I feel I must be paying attention to every word, every action.

It is so tiring. I’m so tired. Tired of watching, tired of listening, tired of not being able to take part in inane conversation, tired of pretending to be paying attention, frantically trying to piece together bits and pieces of a conversation into something coherent.

***

The only time I don’t is when she has a playdate with either one of two of her friends who are also special needs kids. They get each other, like REALLY get each other. When her friend L comes over, I feel perfectly fine letting the two of them play alone in the play room or in Brooke’s room, because, well they play. The same with her friend D.

***
Last week I spoke with another dad. His child is much older than Brooke and swims at the deeper end of the Autism pool. His child has very few words. Were she neuro-typical or only mildly brushed with autism, she’d be getting her drivers license this year. There is no rest for him or his wife. I could sense his constant vigilance even as his voice conveyed defeat and weariness.

***
A lot can happen in 5, 10, 15 years. Between advances in science and changes in societal views, the world could be a much different place for Brooke when she reaches driving age than for that dad’s daughter, but I know I will still be watching…I will still be weary…I will still only be half listening…

Read Full Post »

Dashed

Posted in Uncategorized, tagged on June 11, 2012| 14 Comments »

There were so many highlights, so many wonderful moments this past weekend…but, as what should have been one of those highlights played out on a screen, autism reached out and clamped its heavy hands around my throat and squeezed.  I didn’t say anything for fear that maybe I was seeing something that my wife did not.  I wanted her to turn it off.

I didn’t say a word until it was done.

That was…hard, I said.

And then I broke down.  I broke down and cried.  I cried like a young child who has been told the brand new puppy his family got must be returned.  I cried like a young teenager who just found out her crush likes the girl who terrorizes her.  I cried, wanting scream, It’s not fair!!! I wept like I have not wept in a long time.

***

This moment happened over 24 hours after the actual event.  We had traveled south for a cousin’s Bat Mitzvah.  The cousin and her family (and even her friends) had gone out of their way to make the event user-friendly for Brooke.  Brooke herself had a wonderful time, dancing the night away on the dance floor, even when no one else was dancing.  She got her cousins to join her; she got her cousin’s friends to join her.  To say she was seamlessly blending in would be a tremendous over-statement, but the truth is, those around her were accepting her for who she was and as parents, it felt great.

Before the party began, all of the kids were called into the ballroom to learn a flash mob style dance that would take place on the Bat Mitzvah girl’s entrance.  Honestly, it was pretty darn cool!  While in the cocktail hour I got a text from Jess saying that Brooke was getting right in there learning the moves.  Half an hour later, as the family members were being called in, I was beaming, watching my little Brooke stepping from side to side clapping, watching the people around her to make sure she was doing the right moves.  At the big entrance, the kids mobbed the floor and went into the routine.  Brooke went right along, watching, imitating, even anticipating.  I was so proud of her.

The rest of the night, she flittered back and forth between the kids table, the dance floor and occasionally just checking in with us to make sure we were there.  It was by far the easiest large scale party we have done with her – ever!  I am so grateful to our cousins and their friends for making it so easy.  On the way back to the hotel, both Jess and I told both of our girls just how proud we were of them, how well they handled themselves.

***

But then last night I helped Jess upload the video of “the Grand Entrance”.  I had been eagerly anticipating watching the video, reliving the awesome moment of Brooke participating in a flash mob; excited to see her dance with a group; waiting to exorcise the demons of the ballet recital that never was so many years ago that left me weeping in a parking lot for 20 minutes.

When the video finally came through, I pressed play.  I was so excited.

And then the wind simply died.  My anticipation was rewarded with a slap, a dose of raw reality.

I wanted to turn it off.  Yes, she was in there.  Yes, she was trying to keep up. But nothing was in sync, turns were in the opposite direction, occasionally she’d jump ahead.  I did not want to feel this way about something I had felt such pride about not 24 hours earlier.  But I can’t deny that it hurt to watch her; I can’t deny that my heart broke; I can’t deny that fear of the future got the better of me – what happens when she’s 13 and wants to go to a school dance?  Will her friends be so accommodating?  Will she always be “out of sync”?

And so I cried, weeping into my pillow like no man ever wants to admit.

God, I hate autism; any disability; though I know having to deal with it has made me a better man, husband and father, I still fail to see why God needed to brush my baby, anybody’s baby, with autism.

***

I know this pain will pass – at least on the surface.  I know there are more victories than defeats ahead of us.  I know the world is becoming a friendlier place for those like Brooke.  I know, selfishly, that I will recover.

But for now, it hurts.

Read Full Post »

« Newer Posts - Older Posts »