autism | Run Luau Run

Posts Tagged ‘autism’

Out of Focus

Posted in Uncategorized, tagged adult, autism, autism parent, autistic community, friends, parenting, parents on January 17, 2014| 9 Comments »

Parenting can be tough…any kind of parenting. We worry about their safety, their development, their…well, everything. When I look at Katie I worry, but I know that it’s the same worry that every loving mom or dad feels for their kiddo.

But for those of us with special needs kids, sometimes some moments can be especially hard. The other day while walking Brooke to school, we fell in behind a couple of girls in her grade. They were chatting away about this and that. One turned to ask why I was wearing shorts while it was snowing and so cold. I laughed. Meanwhile Brooke was running through a few of her morning scripts. The girls went back to their conversation and Brooke continued with he scripts.

That’s when it really hit me (for like the millionth time) just how big the gap between Brooke and her classmates is and, even harder to take, the fact that there was no exchange whatsoever between these two girls and my daughter…not a “hey”, not a “hi”, not even a nod of acknowledgement. One of the girls had had a few play dates with Brooke over the years, and is one of the nicer, sweeter kids in her grade, but on that day there was nothing. It wasn’t intentional or mean-spirited; it wasn’t an active blindness, but it was a blindness nonetheless. It was as if she and her friend didn’t see Brooke at all.

Brooke herself didn’t seem to notice or care; she simply pushed on with her morning scripts. I, on the other hand, was devastated.

With Middle School looming not so far away, and then High School and beyond, I am having a harder and harder time imagining what Brooke’s adult life will be like. I used to be able to see it. It was as clear as HD TV in my mind; but with each passing year, month, week, day…the picture loses a little focus and what I see in my mind becomes a little more foggy, a little more murky, a little more unclear.

I did find some hope this past weekend. I was lucky enough to be invited to a dinner of young autistic adults. Some were more talkative than others. I chatted with several people on varying topics. Most importantly though, Brooke seemed comfortable with the people there. They all acknowledged her presence – they all saw her (and she saw them).

So as cloudy and as murky as my images of the future may be, it is comforting to know that out there in the real world are autistic people who support each other, cheer for each other, but most importantly, see each other. As long as I know that Brooke will have that when she grows up, I can live with the picture in my head being a bit out of focus.

Read Full Post »

Sadness…

Posted in Autism, running, tagged autism, autism awareness, Autism Speaks, Charity Miles, Charity Miles App, running, sad, sadness, suzanne wright on November 16, 2013| 33 Comments »

I went out for a run this morning. 5 miles, 39 minutes on the nose. I went out with no particular plan, but I eventually found myself at the local high school track. While there, for no apparent reason, I decided to do a couple of Fartleks at 5 minutes a piece, averaging at about a 6:20 pace. The run itself really is nothing to write about; it is rather how my run started that has me sad.

For over the past year I have been using the Charity Miles App for almost every run I do outside.

It is ingrained into my routine – step outside, put in earbuds, start my playlist, start the Charity Miles App, swipe to the Autism Speaks page, hit go, run. For almost every single run over the past year and a half, this has been my routine, whether it be a training run, a fun run or a race.

The same thing, over and over.

Every run was inspired because I knew every extra mile was a little extra money going to Autism Speaks…every extra stride was money being spent on awareness…every step was improving the lives of autistics and their families…

With the family out on various errands and activities, I decided I needed to go for a run. I went through my routine – step outside, put in earbuds, start my playlist, start the Charity Miles App, swipe to the Autism Speaks page, hit g…

I stopped.

I thought of Suzanne Wright’s call to action.

I stared at my screen.

I thought of Suzanne broadly painting every family with autism as lost.

I sighed.

I thought of Suzanne making it clear that their focus was on children only.

My thumb hovered over the start button…wavering just so.

I thought of the countless autistic adults who are being left behind by Suzanne Wright’s call to action.

I sighed and looked away, hanging my head.

I thought of the fact that Brooke is only a handful of years away from being an adult.

Sadness overcame me as I realized I just couldn’t bring myself to pressing start.

I swiped through the other very worthy charities that Charity Miles has teamed up with. I finally settled on Achilles International, an inspiring group that helps disabled athletes compete in events like the New York City Marathon. Although I did not cry outwardly, I was doing so on the inside.

…feeling lost and sad after 5 miles…

I am sad.

Read Full Post »

Painted Into A Corner…

Posted in Autism, running, tagged autism, autism advocate, autism awareness, autism diagnosis, Autism Speaks, autistic adults, autistic daughter, diagnosis, painted into a corner, running, self advocacy, suzanne wright, throw me a bone on November 14, 2013| 12 Comments »

There is a certain freedom I feel when I run – the rhythmic beat of my feet, the wind in my hair, the straining of my muscles and lungs, all contribute to a feeling that I am free to go, at least for a short while, wherever my feet may take me. For a while, running served solely as my version of therapy. Along with the everyday struggles we all experience in life, our family also has an autism diagnosis. I will readily admit I struggled with the concept that my baby girl was not going to lead the life I had imagined for her. It took me some time to adjust my way of thinking…evolve, if you will. Initially running gave me an outlet, a place where I could funnel all my frustration and anger and return physically spent but mentally refreshed and recharged. It wasn’t long thereafter that I realized that I could use my running, the activity that had given so much to me over the course of a year or two, and use it to help my daughter and those like her. Running would not only help me deal with my daily struggles with my daughter’s autism diagnosis, it would help make the world a better place for her.

In the very beginning of our family’s journey with autism, my first thoughts were focused on a cure. I was scared, not for me, but for my baby. How on God’s green Earth was she ever going to make it without being cured of this…this…thing? My initial reaction to Brooke’s diagnosis was because there was so little out there in the way of awareness and accommodation. For months I would cry when nobody was looking, whether it was in the bathroom in the middle of the night or during the day when I was home alone.

Eventually I came to understand that what was best for my baby was autism awareness. What would a cure mean anyway? Who would I be left with? Through our initial interactions with Autism Speaks, I became enamored with their awareness campaign and their dogged pursuit of health insurance reform on a state by state basis. In 2010 I began running for Autism Speaks in support of these two things, knowing that awareness and health insurance coverage for autistics would make my daughter’s life easier, better, more accessible.

Since Fall of 2010 I have run three New York City Marathons, two Boston 13.1 Half Marathons, one 100 Mile Ultra-Marathon and streaked 167 straight days while using the Charity Miles App, raising thousands of dollars, all in support of Autism Speaks because I believe in awareness and I believe in health care coverage for autistic people.

Awareness leads to understanding which in turn leads to compassion and empathy which hopefully evolves into acceptance and inclusion. Health care coverage means families worry less and have more time to focus on what is most important – their family.

Suzanne Wright has painted me into a corner. She has made it clear that her focus is on children and on a cure. She has chosen to ignore self-advocates and the whole of adult autistics. I understand that the autism she and her family experiences may be different than that of mine. I even understand why some families seek a cure – I was one of those people once upon a time. There’s a reason why they seek it, and for some, it has nothing to do with autism and more to do with how society, and certain advocacy groups, views autistic people – there is a difference.

Some day, Brooke will be an adult. She will still be autistic. My hope is that she will be able to advocate for herself and others like her if she so chooses. I hope that people will listen to her just as intently then as they do now.

Suzanne Wright has painted me into a corner because in her plan, there will soon be no room for Brooke; there will be no place for her in Suzanne’s world view. Why does this matter? Because Autism Speaks has the biggest platform, the loudest voice and the most money.

Throw me a bone, Suzanne. Tell me you understand that there is more than just one autism. Tell me that you understand that our children will grow up to be adults. I know many parents mourn the child they thought they were going to raise. Honestly though, how many parents, of any children, actually end up raising the kids they imagined they would have.

There are times, Suzanne, where I and my family feel lost. That doesn’t mean we are lost. There is a huge, HUGE difference. Throw me a bone, Suzanne. Tell me that the opinions of autistic adults, no matter how they communicate, matter. Tell me that you’ve gone back over your last op-ed piece and realize that your words were too harsh, too exclusive, too narrow. Tell me you want John Robison back and that you promise to add several more autistic adults to your board so that you can better direct what it is that Autism Speaks stands for. It’s right there in the name, Suzanne. Autism Speaks. Please, throw me a bone.

Running is where I find freedom – it is a joyful experience for me. You can see it here after 26.2 miles of spreading autism awareness.

The New York City Marathon 2013…after 26.2 miles of spreading awareness…

Where does that energy come from? My daughter…my autistic daughter who will someday be an autistic adult. Someone who is only about 10 years away from not fitting into your model anymore.

What am I supposed to do Suzanne? What am I supposed to do? Throw me a bone, please, because you’ve painted me into a corner.

I leave you with this thought that came mind this morning:

Read Full Post »

Oreo Cookies and Milk

Posted in Uncategorized, tagged autism, cancer, health gurus, healthful eating, inorganic food, internet health gurus, moderation, obesity, oreo cookies, organic food on November 5, 2013| 4 Comments »

I have a friend, MK. He doesn’t know it, but I often call him my reality check. I call him this because very often, when I write something without fully thinking it through (which is most of the time), he is there to intelligently present either an opposing view or even better put, a wider, more global view. I’ve thought of him over the past several weeks as I’ve watched several friends write posts on Facebook that have essentially said, “if you eat processed food, you will die!” While I fully encourage the concept of healthful eating, and I also believe that eating solely processed, packaged foods is not good for your long term health, I have trouble with statements like these. They fit right in with the “worried about the cost of organic eating? how about the cost of getting cancer? Now THAT’s expensive!” I can’t tell you how many friends have posted that one. The issue I take with statements like these is two-fold:

1. Making an absolute statement like, “eating that Oreo will give you cancer, make you obese, turn you into an addict and give you diabetes” is very much like handing out “You’re Fat” notes on Halloween to kids you perceive as fat. It’s not bullying per se, but it is still meant to make the Oreo eater feel guilt and embarrassment. It’s not nearly as brutal nor as clumsy, but it still paints with broad brush strokes that reveal only a surface understanding of the more detailed biological mechanisms. It is just as incomplete and can be damaging to those who blindly follow. Let’s be clear, eating an Oreo is not going to give you cancer or diabetes or make you obese. In fact, eating a whole package of Oreo Cookies will do none of those things either. What “eating Oreos will make you obese, give you diabetes, turn you into an addict and kill you with cancer” lacks is the second half of a statement, something along the lines of “if that is all you eat” or “if you eat a whole package every day for months and years on end.” There is nothing wrong with occasionally enjoying four or five Oreo cookies smashed at the bottom of a glass of whole milk…just don’t make a regular habit of it. The phrase sugar addiction will often come into play in these discussions – the argument being that sugar is more addictive than cocaine or morphine. Sugar addiction IS real, but again, the second half of the complete thought is almost always left off…for some. There have been studies that show sugar addiction is real in rats, and to be honest, even though there may not be specific scientific studies that show the same in humans, the unscientific (albeit occasionally misleading) eyeball test tells us a different story. That being said, not everyone is predisposed to sugar addiction or even the side effects of sugar intake – that is something that many “experts” will either forget to mention or don’t know or even worse, willfully omit.

2. Organic and fresh food is more expensive. It just is, there is no way around that. But to try to appeal to people through the “well imagine how much cancer is gonna cost you when you get it eating all that cheap, packaged inorganic crap” doesn’t take into consideration the fact that A. not all people actually have access to organic food (heck, some people in this country don’t even have easy access to fresh veggies and fruits – see Detroit) and B. some people simply can’t afford to buy all organic all the time. For some people it becomes a choice of eating and going to bed with a full belly or eating a lot less and going to bed hungry. I can’t claim to know what the numbers are but I’m pretty sure that constant hunger doesn’t do the brain or the prospects of longevity any favors. What’s the cost of an underdeveloped intellect due to near starving conditions? What’s the cost of growing up with a weak body because you couldn’t get enough calories into it due to an insistence on buying only organic?

Now don’t get me wrong. If you CAN eat fresh veggies and fruits, and you CAN afford to buy organic, you probably should – the less chemicals and fewer packaged foods we put into our bodies the better. But you have to balance that with a little common sense. Our bodies are incredible biological machines. Our cells turnover every 7 to 10 years. Our bodies do a fantastic, albeit not perfect, job of cleaning out the waste. Some Oreo Cookies and Milk here or some McDonald’s there or a few Snickers bars at Halloween or feeding your kids some prepared chicken nuggets now and again are not going to kill you or them, make either of you fat or cause cancer. Occasional treats, if truly treated as treats you have occasionally, can actually be good for you mentally, and we all know that our mental health is just as, if not more, important as our physical health.

You do what you can with the budget and resources you have available.

Ultimately I believe it comes down to moderation. If you eat a healthful diet in general, don’t let the internet health “gurus” and “experts” out there make you feel bad about hitting Burger King on a road trip or jamming a few candy bars after a big race. Again, just don’t make it a regular habit. I’ll admit right now, I swiped a mini Kit Kat, a mini Baby Ruth and a mini Almond Joy from my daughter’s Halloween bag to have as a snack while I wrote this blog post. They were tasty but honestly, they will probably be the last candy of any kind I eat before Thanksgiving. It’s not because I have some incredible will power. I’m not fighting some urge to have chocolate. I simply don’t crave it, and having it every now and again never changes that.

As my father has always told me, “everything in moderation” remembering of course that moderation will not work for some.

The bottom line for me is that those who write, tweet, or blog about health and fitness issues need to be careful with the size of the brushes with which they paint. If there is one thing having an autistic daughter has taught me it is that we are all on a spectrum, and what may work for some may have the exact opposite effect on others. Blanket statements rarely hold up under scrutiny because we are not carbon copies of each other.

We are all different.

***The one caveat I will put here is this – if you know that you have an addictive personality, or have problems with self-control, then it is probably good to avoid the cookies or the fast food altogether or at the very least keep them out of your home so you are not regularly tempted by them. You have to know yourself – working with your strengths, protecting yourself from your weaknesses.

Read Full Post »

Dear CNT Parents…

Posted in Uncategorized, tagged autism, C.N.T. Parents, Disney, motherhood, parenting on September 26, 2013| 10 Comments »

Dear C.N.T. (Clueless Neuro Typical) Parents,

I hate to admit it, but I agree with you. This Disney thing about the lines and the waiting? Yup, we are on the same page. I agree that the issue is bratty, ill-behaved kids and their lazy parents. I’m with you that it’s about people who feel like they are entitled to go right to the front of the line. I agree that it’s about parents who have no control over their children and take advantage of a system to cut in line in front of everyone who is patiently waiting for their turn to ride It’s A Small World or my personal favorite, the Haunted House. The parents don’t want to do the work necessary to teach their kids the lessons of patience and expected public behavior. The kids are fidgety and noisy and have an absolute lack of self-control. Your kids push and shove. They cut people off, pushing others out of the way and you just smile or shrug your shoulders as if to say, “what are ya gonna do?”

Oh, wait, what? You thought I was talking about parents of Special Needs kids?

Um, no.

This debate about special lines for Special Needs families is actually not all about those families. This debate is about you, the C.N.T. Parent. Why is there a special line for Special Needs families? In part, it’s because of your clueless looks of disdain and horror when our kids flap or squeal in line. It’s because you jump to the conclusion that if our child is flapping their arms or screaming in response to every time your child says, “Mama, Mama, Mama, Mama, Mama,” while you ignore your child, my child must be a brat or misbehaving. It’s because your child will walk up to our child and say, “what the hell is wrong with you?” and you do nothing. It’s the complete lack of empathy on your part and your inability to teach it to your own misbehaving, bratty children.

So when a place like Disney makes an effort to ease the discomfort for everyone (you included) by giving us our own line, you decide, “well, I deserve that too.” So you actually go to guest services and game the system. You actually go to guest services and say, “my child has a disability, give me my fucking guest pass.” This, despite that fact that your child is completely typical.

This debate is not about letting Special Needs families “cut” in line. It’s about giving them their own line because C.N.T. Parents like you didn’t want us in your line in the first place.

But it’s also about safety. If my kid flaps to calm down, isn’t safer to let her flap in a line populated by people who understand to give her a little space as opposed to packing her with you and your unempathetic brood?

So, you’re right – these parents have to get off their asses and actually discipline their children and teach them how to behave in society, but those parents are you, the C.N.T. Parent, and those kids are yours.

Come walk in our shoes for a week during the school year and you’ll see what hard parenting work really is.

Thanks for nothing,

Luau

Read Full Post »

Why?

Posted in Uncategorized, tagged autism, why on September 20, 2013| 6 Comments »

So yesterday was curriculum night at Katie’s school. I’ve gotta tell you, I really like the group of teachers she has this year. They are energetic, dynamic, eager and they seem to genuinely care about their kids. The night was fantastic, except for one little blip.

Those of you who follow Jess may have seen her post this on her Facebook page:

From the very moment the social studies teacher said “three” and “why” I knew the tears were coming. I was sitting behind Jess so I put my hand on her shoulder, hoping that I could help her keep the tears in. It was a tough moment.

But there was something that I had forgotten to share with Jess over the past week; something that really didn’t register until that moment, sitting in the classroom; something that I had inadvertently brushed off three times.

On three separate occasions this past week, Brooke began to relentlessly ask me “why?”

We need to go to speech Brooke.
Why?
Well, because it helps with your communication skills.
Why?
Well, Ms. A helps teach you how to use certain tools so you can tell me and mama what you need or like or want to share.
Why?
Because that is her job.
Why?
Because that’s the field she chose…

Time to take a bath.
Why?
Because you need to get clean.
Why?
Because you’re dirty.
Why?
Because you played out in the sun today.
Why?
Because you’re teachers let you all out for recess.
Why?
So you could get the jigglies out…

…and on and on it went…on three different occasions…from my 10 year old daughter…and it was wonderful!

Read Full Post »

Memory Loss

Posted in Uncategorized, tagged "Those who cannot remember the past are condemned to repeat it.", autism, blinders, bombing, chemical weapons, citizens of the world, colorful history, dusty pages, George Santayana, history, lip service, military intervention, syria, vaccinations, vaccines on September 12, 2013| 1 Comment »

“Those who cannot remember the past are condemned to repeat it.”
~George Santayana

We are all mortal. Eventually each and every one of us will die. The only way our thoughts and beliefs will carry on once we are gone is through recorded history, whether that be in the form of the written word, photographs, digital media or even our most ancient of methods, word of mouth. Although the world is constantly changing, seemingly hurtling headlong toward the future in faster and faster bursts, it would behoove us to look back and truly study our past. It seems that in this day and age, when access to humankind’s rich and colorful history is the most accessible it has ever been, available to all with access to a computer and the internet, that more and more the citizens of the world give only lip service to those who came before us.

We have been charmed by soundbites, headlines and narratives fashioned by others, by those who should know better, who should act better, who should be better. They focus on the now without truly understanding that “now” only exist because of “then”; that without “then” there would be no “now”. But their biggest folly in ignoring the dusty pages of history is that mankind is essentially stumbling into the future with blinders on. Though no one can truly “see” the future, studying the past can at least reveal some of the pitfalls that lie ahead and help us avoid repeating the same mistakes.

The focus in the news for the past week or so has been whether or not we should bomb Syria in response to their use of chemical weapons. It would seem that our President has stumbled through this “crisis”. Polls show that the majority of the US is against any kind of military intervention – it’s not our business – stay our of Syria – we don’t want to get into another quagmire. I don’t know what the right answer is, but I do wonder this – do any of the people who are so adamantly opposed to punishing Syria for its use of chemical weapons have any idea of just how horrific chemical weapons like mustard gas are? People of my generation do not remember the horrors of soldier suffocating in the trenches; the unpredictability of a gas let loose to the wind, sometimes bringing the gas right back to the armies that had deployed it or into towns and villages in the surrounding area.

It is possible that President Obama was bailed out of this mess by an off the cuff remark by Secretary of State Kerry and an opportunistic move by Russian President Vladamir Putin. Opponents of President Obama are howling that he has been shown up by Putin and now Russia, that paragon of diplomacy, has won and the USA has lost. To paraphrase Jon Stewart from the Daily Show, who cares? As long as those chemical weapons are being taken off the shelves and locked up for good, we ALL win. Up until this point, no one else was willing to take a stand on the use of chemical weapons. All war is horrific, but it was decided long ago that the use of chemical weapons were beyond the framework of the battlefield, were much too unpredictable, much too uncontrollable.

On the surface it might seem an odd segue to bring up the topic of vaccines, but this is the very topic that came to mind while I was watching the news coverage of the opposition to bombing Syria. So many have begun to eschew vaccinations for fear their child might get autism or some other neurological disorder – the knee jerk reaction to a study based on bad science continually spread by bubble headed celebrities. It has left us, all of us, more vulnerable to the horrors of disease. People of my generation and younger do not remember little Johnny or Janey disappearing in the middle of the school year, sometimes returning with a disfigured leg; sometimes never returning at all – victim to the crippling, often lethal effects of polio. People of my generation and younger do not remember the near 30% fatality rate of measles or the sometimes resulting infertility from mumps. We don’t see these horrors anymore because science found a way to protect us from these diseases. Many of those horrors have been relegated to the pages of history. We have rid the world of smallpox. We are close to eradicating polio.

They are history.

There is a reason why those who come before us feel compelled to record their time in history.

A parent will inevitably tell his/her teenage child, “trust me, I’ve been there, done that and you don’t want to repeat the mistakes I made.” What will the teenager do? Exactly what the parent doesn’t want them to do. It is the natural order of things; the circle of life – but mankind is not a teenager; governments and communities are not teenagers – they are run by adults who should know better, who should act better, who should be better.

George Santayana’s quote is worth repeating – Those who cannot remember the past are condemned to repeat it.

Read Full Post »

The Moon

Posted in Uncategorized, tagged autism, class lists, school, september on August 23, 2013| 5 Comments »

Phones are ringing all around me.

Social Media is abuzz.

Conversations between mommies,

Did you see we’re in the same class?

Oh, our kids aren’t going to be together!

We should see if they can share a locker.

Did you hear that Johnny ended up in Mrs. Jones’ class?

How awful.

How wonderful.

I can’t wait to send them back to school.

they fly back and forth,

by phone,

by text,

by Facebook.

Except not in my house.

***

Class lists came out.

It has become a tough time of year for me, and as Brooke has gotten older, it is becoming more so. The conversations go whizzing by my head. Occasionally I do the equivalent of who me? only to turn around and see that the person they are talking to is the cool kid behind me.

I used to love this time of year.

I used to be one of those moms.

Read Full Post »

Dear Brother…

Posted in Uncategorized, tagged acceptance, autism, band of brothers, brother, daughter, denial, diagnosis, father, fathers, mother, son on August 20, 2013| 10 Comments »

Dear Brother,

We are not wired for this. Our problem solving skills do not match up well with this unexpected challenge that has been unexpectedly thrust upon us.

What do you mean it can’t be fixed?

What do you mean there is no cure?

I know exactly how you feel. Even though my head knows better, my heart still wants to fix it…fix her, just like I know you want to fix him.

It is what we do as men – we fix things. If something is broken, we fix it. If we can’t fix it, we probably know someone who knows someone who can. Flat tire, broken hose, leaky pipe? No problem, pass the tools. If it’s something bigger? Pass the phone, I know a guy…

***

Dear Brother,

This is different. Our kids aren’t machines. It took me some time to come to the realization that our kids aren’t broken; they are simply different. Can that difference make life harder? Yeah, right now it can; but difference, whether it be race, gender, orientation, height, weight or autism can do that.

But different doesn’t mean bad.

***

Dear Brother,

Don’t be afraid of labels. It took me time to realize that when Brooke received her autism diagnosis, she was still the same girl she was before the doctor said, “autism”. The label doesn’t change our kids dear brother. In fact, the label empowers them…empowers us. The label gives us a powerful tool in helping our kids get the services they need. The label can turn resentment of strangers into compassion, helping them understand that when our kids have public meltdowns, it’s not because they are bratty or that we are bad parents, but rather because the environment has overwhelmed our kids’ capacity to cope. The label is not about pigeon holing our kids…it’s about setting them free.

***

Dear Brother,

It takes time for us to get to the place where our kids’ mothers are. Truthfully, we will never occupy the same space. We are not wired the way they are. Intellectually we will know, but a small part of our hearts will always betray us. But that’s okay. Just like our kids, we are different.

Autism is part of who our babies are. Admitting that doesn’t change them. Admitting that doesn’t hurt them. Admitting that doesn’t mean you love your kid any less. Admitting that doesn’t mean you will stop searching for ways to make his life easier. In fact, admitting that will in all likelihood hasten the influx of tools that are available to you, your wife, and most importantly, your son.

***

Dear Brother,

It’s okay to feel the way you do…it is how we are wired, but ultimately, denial only hurts the one, beautiful creature we are trying to protect.

Sincerely & Respectfully,

Luau

Read Full Post »

It’s Not Just Scaffolding…

Posted in Uncategorized, tagged autism, fitness, Goals, health, healthy living, lifestyle, scaffolding on July 22, 2013| 3 Comments »

I recently read a blog post of an acquaintance of mine where the poster came clean about having gained back nearly the 100 lbs lost over the previous few years. This was particularly hard for the blogger because the blog had become a source of inspiration for so many trying to lose weight and get fit. What was the main reason for the weight gain? After watching food intake and running regularly, the blogger stopped doing both. Having reached the goal weight, the “scaffolding” was put away.

***

Recently it was suggested by some people who have a direct impact on Brooke’s education that certain support services be phased out or removed. The argument was made that she didn’t need them anymore, evidenced by just how well she was doing; that the scaffolding was no longer necessary.

***

There are short-term projects, there are long-term projects and then there are life-long projects. In both the short- and long-term projects, eventually, usually with some hard work, one will reach a goal, bask in the glory of achievement and then move on to the next goal. The supports used for attaining that goal can either be passed on to others or put away for the next time they become necessary.

But then there is the lifetime-goal or maybe more appropriately, the lifestyle-goal. I don’t mean Robin Leach’s “Lifestyles of the Rich and Famous” kind of lifestyle, I mean the “way you live your life” kind of lifestyle. These kind of goals, if different from the way we currently live our lives, demand changes in the way we go about doing things. They require us to buy into a system so to speak; to drink the kool-aid.

***

A few years ago I set a goal of qualifying for the Boston Marathon. Using a variety of tools that included core work, interval training, tempo run and many others, I accomplished that. For quite some time afterward, I did not feel the need to push myself as hard. I still ran marathons (halves, fulls and ultras), but my approach to them changed. I simply wanted to be able to enjoy them and spread the enjoyment of them to those around me. I was able to put away some of those tools that I had used so intensely during BQ-training because I no longer needed them. I will pull them out again, in the near future, as I attempt to qualify for Boston again in either 2014 or 2015.

In the meantime, I do continue to run on a regular (and currently daily) basis. Why? Because I know that unlike qualifying for Boston (which is a specific point in time goal), I also want to live a long, healthy life and be physically able to care for my wife and children as long as I can. Physical fitness is NOT a “point in time” goal. It is a lifetime goal. Therefore that “scaffolding” that helps me build my fitness is not just scaffolding – it becomes part of the permanent structure.

***

Brooke has autism. She will always have autism. She will acquire skills and develop the ability to adapt over the course of time, but autism will always be a part of her. Those skills and ability to adapt come from the scaffolding that is put in place around her. It’s true that eventually she may not need all of the supports she receives and someday I hope that she will be able to live as independently and be as societaly productive as any of her neurotypical peers, but the tools will have to always remain present in one form or another.

I don’t see the logic in taking away support because the support is working as some administrators might suggest.

The same goes for fitness and health. It’s one thing to join a gym, take a class, change the way you eat or whatever works for you to achieve a fitness goal – just remember what got you there.