For Susan Dominus of The New York Times

An Autism Awareness Message for reporters like Susan Dominus from The New York Times, who feel they can trivialize anything for a good spin...

The above picture is my son.

I didn't take this picture for the purpose of sharing it anywhere, except for my own personal documentary of my "Life with Autism".  The picture was sweet and peaceful to me, taken right after he had yet another chaotic seizure in the tub.  I texted that picture to my husband at work so he would know to pray for his sweet son that day.

But in light of the recent story in The New York Times, by Susan Dominus, (read here), I felt this picture would go well with my reply to what she implied.

Apparently my warning to her at the event my Autism organization co-hosted where Dr. Wakefield was a featured presenter, that she quoted, wasn't clear enough.  She had come up to me and asked about our "armed guards" and my thoughts of Wakefield's work, and shared that she was following him to do an in-depth article about him...  I half-jokingly but totally seriously said, "Great, be nice to him or we will hurt you!".

I was honored to receive a call from her a couple times over the next few weeks asking more about our son and how we came to know of Wakefield, (er, should I now refer to him as: The Autism Guru), and subsequently get treatment for the very things he found in his research, for our son.

But now, sitting here after having read that article, I could very easily have that ruin my day.

But it won't.

It's sad, yes.  But not surprising.  In fact, thought processes like hers, that I'm sure she felt was good journalism that might earn her an award of some sort, are a dime a dozen, if worth that much.

All one has to do is refer to Brian Deer's "journalism award" for confirmation on that....

Wording something to have readers infer that my son would have miraculously "matured out of" those horrible daily bouts of diarrhea, after a decade of suffering from it already, is not provocative, it's pathetic.  And it shows a total lack of knowledge about what Autism is and how it affects a child in so many debilitating ways.

Let's take my son's seizures as another example, Susan, et al.

For oh, the last six years now, he's had Grand Mal, Atonic, Myoclonic, and Absence seizures off and on, occurring in cycles ranging in severity.

This last cycle started in September 2010.  It is severe, and hasn't stopped.  He's been to the emergency room twice now because they were so bad he was dehydrated from them.

If a doctor actually took the time to relate the cause of those to a viral infection or result of vaccination, and actually found a treatment that helped them, and he recovered, would you as well conclude that he "just matured" out of them? That if I was just patient enough, waited long enough, they would go away?

Like you seemed to imply with the GI Issues he had for a decade?

We haven't been so lucky thus far.  No one has helped us determine the cause or potential trigger.  No one. And we've tried everything and have seen the best our medical center and insurance can offer us.

So do I just give up Susan?

Do I just take it on your authority that "he will mature out of it"?

Hmmm?

Tell me Susan, and all others like you --- when my son was in the tub like he was right before that picture was taken, and went into a Grand Mal seizure, to slip under the water if I wasn't there to potentially drown, what would you have me do?  What is your answer?

When would you start giving credit to a man who would dare be different, be brave enough, to help a child like mine no matter how controversial his theory?

It's reporting like yours, that keep children like mine in diapers all their lives, with incredible stomach pain, and dozens of bouts of diarrhea daily.

It's implications like what you wrote, that will keep my family on constant "red-alert" for seizures where we don't know if this one will be the last.  When he drowns in the tub in the split second we leave the room. Where he falls down the stairs during a seizure and breaks his neck.  When he is laying face down in his bed and has a seizure and suffocates because he can't breathe.

Where he has to lay on the bathroom floor naked because all the strength my aging-self had in lifting up my soaking wet, soapy, 145 pound dead weight son, was spent in just getting him out of the tub and onto that floor where all I could then do was wait until my son came home for lunch to help me get him dressed and on the bed.

Wakefield is not a guru.  He is not the leader of some misguided cult.  He is not some charming maverick that parents are smitten by.

What he is, is the sacrificial lamb for a group of people with nothing better to do than discredit one of the few physicians/researchers who have ever brought anything useful to the table of autism research.  You, the reporters who value their paycheck and career advancement opportunities over daring to sway a story against the tide of mainstream cover-your-ass-at-all-cost politics.  The physicians whose very reputations would be ruined if that truth came out.  The vaccine manufacturers who would have to find another way to fund their posh paychecks if they were ever held liable for the damage they have done.

Wakefield is simply a man who dared to tell the truth.

Who dared to listen and do something about it when a mother told him her son was in pain and no one else could tell her why or help him.

Wakefield is a man who believes in the Hopeism us parents cling to, because some days that's all there is to cling to...

That belief that through the muck and mire of reporting like yours that we must wade through daily, that Tuscany is indeed out there. We can see it clearly.  It is within our reach.  

And that someday we too, might actually get to stop fighting for a moment, sit down on our back porch, and enjoy it.

You want to call him something?  Call him a brave Knight who was not afraid to have given his life for the cause.

Or in American words, a hero.

Welcome to Autism...

Welcome to Autism!

I guess I should explain. This is my version of "Welcome to Holland!" or "Welcome to Beiruit!" -- two very different "Welcome's" floating around this National Autism Awareness month, describing what it's like to have a child diagnosed with autism.

I actually love both versions.

(links to both at the end after signature line)

In my role as facilitator for an autism organization, I get many calls and e-mails. Parents telling me their child was just diagnosed with autism and asking what they should expect. I hate that. I love that they found my group as a resource to ask those questions, but I hate trying to figure out what to say. How to say it. Do I tell them  the "Welcome to Holland" gentle story? Do I tell them the "Welcome to Beiruit" -- war-torn-country story?  How do you be politically correct to the rookie, get them to the neutral zone of Switzerland, when as a veteran you know their "Fantasy Island" was just nuked by that diagnosis of Autism?

Sometimes it seems nothing can be easy or clear-cut with autism.

Whether living with it, or writing about it, there is much criticism.

If you write too honestly, too provocatively about the hardships of life with autism - you are interpreted as being manically depressed needing medication. If you write to figuratively, too spiritually about autism, you are interpreted as wanting people to feel sorry for your child and needing them to throw you a pity party. And if you write too positively and too naturally about autism making it seem like a slight hiccup that will go away, you are convicted as being a false prophet needing to be crucified on the cross.

It really is sometimes, the epitome of a no-win situation.

But losing has rarely stopped me in life. I guess that's where the term "Warrior Mom" comes in, in describing mom's of children, youth, or adults with autism who simply refuse to give up.

We don't let praise make us prideful; and we don't let criticism cripple us.

At least I don't.

I write about the true, in your face reality of autism. If that seems negative, it's because autism sometimes is. I write about the true, spiritual, positive aspect of autism as it has impacted my life. If that seems too good to be true, it's because the Hopeism and Spirituality autism brings to me is sometimes out-of-this-world-crazy-too-good-to-be-true-yet-is.

Autism is not black or white. It's black and white. And to convey that it's neutral, gray, - is not a real picture.

Autism is indeed Holland or Beiruit, most definitely not Switzerland.

It's bittersweet irony at its best, and I cannot believe I've been on this roller-coaster for fifteen years now. In some ways it seems like yesterday, and in other ways, a lifetime ago. My son has come so far and yet has so very far to go!

It's mind-boggling really. In how I went from a young woman who at eighteen years of age said she’d never get married, much less have children, to a forty-something wife of nearly twenty-five years, and mom to two boys, – one of which has autism. Certainly not the yuppie life I had envisioned; and yet certainly not a life I would ever trade for all the yuppie status in the world.

Yet even though I wouldn’t trade this life, it is overwhelming….

The overwhelming unconditional love and devotion you can have for someone who doesn't even know what love or devotion means. The overwhelming heartache in watching that someone have to daily struggle so dang much to do the things others take for granted.

The whiplash of ping-ponging between those black and white emotions of life with autism.

Life with autism will sometimes make you scream, except this kind of screaming will not mean you are on "Mr. Toad's Wild Ride."  No, you'll be too exhausted for that most nights....

It'll mean instead, that some days, especially with the additional insanity autism advocacy brings, screaming is all you can do. It means that some day's, screaming will be all your child does.

I think the greatest disservice we can do for another parent is to portray autism as one size fits all.

It doesn't.  There's high-functioning, low-functioning, and the ever amusing PDD-NOS ----autism. The Asperger's and Rainman autism. The verbal autism, the non-verbal autism. The constipated autism, the leaky-gut autism. The autism a'la'carte' - with side orders of seizures, immune dysfunction, allergies, food issues, etc. There's those who will overcome their autism, and those who won't. There's those who want to cure their child's autism, and those who don't. There's those who see it as a blessing, and those who view it as a curse.

There is both the heartache of autism and the hopeism in autism.

To say that someone is not living in the reality of autism because they choose to see the hopeism, is no more false than thinking because someone shares about the challenges of autism they must be depressed and need anti-depressants.

Trust me, if anything is depressing about autism, it's the people who say that...

Autism is accepting that it is a cycle of anger, outrage, denial, discouragement, love, hope, and joy - that make no mistake, every parent goes through at one time or another, often all at once, and again and again with each stage of autism.

Autism is..... as my friend put it: ".... not the end of the world – but the beginning of a new one – just open your eyes and see….”

Of course I didn’t do that at the time. In fact, when my son was diagnosed, I shut my eyes so tight in denial that the jaws of life couldn’t have pried them open. I didn’t want to face it. But eventually, I did. I had no choice. And now that my eyes are wide open - I do have to say again, that there are many things in this new world I would not trade for all the "perfect-ness" of having the child I dreamed of while living on Fantasy Island long, long ago before being welcomed to Autism myself.

And finally, autism is humor.  Often in its most sadistic form, but humor nonetheless.

No, there’s nothing funny about this disorder that unites us in this club we never filled out an application to join. But I often use humor to characterize certain aspects of my life with autism. I do realize that a new diagnosis of autism, or any disability or disease, is far from humorous. I do not trivialize that aspect. I do remember very well what my emotions were the day, week, and month after I received the diagnosis of autism. Anything but humorous. But when your house is locked down tighter than the Pentagon so your child with autism won’t flood it, destroy it, or escape from it, – you have to look at that situation with laughter in order to keep your sanity. At least I do, being that my house has been flooded five times, my neighbor has on more than one occasion found that my son has flung open their front door and marched inside for an unexpected visit, in his underwear; and I can't begin to count how many full grocery carts I've been forced by a sensory melt-down (his not mine) to leave in the check-out line of the grocery store.

Yet on the serious side, I've also somehow made it to Washington, D.C. twice now to march with hundreds of fellow warrior moms, dads, doctors, legislators, & advocates - all for the cause of autism.

Depressed, self-pitying mom's don't do that.

Nor do they laugh as much as our family has over the years.

All of this gives me the authority, the wisdom, to welcome anyone to Autism. Or Holland. Or Beiruit. Or wherever the heck it will be for them, because of one thing I am most sure --- it's different for all of us.

Yet one thing is the same no matter which country.

You will never find yourself in the company of more acceptance, more love, more help, more support, more knowledge, than in this community...

(Even considering the things we don't all agree on.)

This community that I love so very much.


In good warrior mom and now Navy mom form -

              HOOYAH!
        Michelle M. Guppy
 MichelleMGuppy@yahoo.com

Welcome to Holland 

Welcome to Beiruit 

When there are no RSVP's to the Pity Party...

Autism awareness is interesting, I'll give it that!

In my fifteen years now of "Life with Autism" -- I've learned a lot.  It makes me not so regretful that I never finished college.  I could have never learned half of what I've learned since autism, with a degree, no matter how many letters preceeded or followed any title I would have had upon such graduation.

(go to, and finish college Matt.... or else!)

I instead, have what you would call one of those "Life experiences" doctorates.  Or whatever is the highest degree nowaday's.   I don't keep up.  No time.  Too busy living for the moment, and sharing those moments with others in hopes of putting a bit of inspiration, encouragement, and realism into the mix.  And if I happen to plant a seed or spark an interest in what gets me through those "Life experiences" -- my Faith, - then I consider myself to have done good.

With all that said, there does come a bit of ..... negativity sometimes about what I've written.  And that's ok. That's what makes America,  -- America.  That we can share different opinions.  We can disagree.   I have actually learned the most, from those who have criticized the most.  Which in itself, goes contrary to everything I've experienced at times.   That criticism is bad, avoid it at all extremes!   Blech!

I've never understood that.  The criticisms I've experienced have shaped me.  I've learned from them where I've needed to, and though I didn't like them at the time, grew to appreciate them.  I've gained resiliency from them when they were just that, bitter criticisms that had no merit and were made in ignorance of the situation.

Which brings me to the ongoing debate in the autism/disability community, of pity versus realism.

I think we, the autism/disability community, get this confused the most.

We aren't to say anything negative about anything. We aren't to let on that it's hard.  We aren't to admit that perhaps some parts of "Life with Autism" are not in fact, natural.

(Most of those mantra's by the way, coming from those whose children who have disabilities, are now in college and weren't smearing poop on the walls for a decade.)

We are to simply be like the complacent church, sitting sweetly in their pews each week, peacefully spreading good cheer.  Not ruffling any feathers for fear of ... whatever.  Because if we do, we might been seen as radical or not really a Christian because we dared step outside the norm.

Daring to write how things are, is radical.  It is outside the norm.  And it is why those who do that, are the most criticized.

So thank you.

You have helped to solidify the fact that women who behave, rarely make history.

And that to indeed make autism history, we need to NOT behave and go with the norm, the status quo. Instead, we need to be as justifiably angry as Jesus was when he turned over the tables in the temple in outrage of how it was being desecrated!

I am truly humbled by the dozens and dozens of comments I've received on my "Life with Autism" blog about "When Autism Awareness isn't so Cute".

And I am equally amused by those who feel it was "woe is me"....  "my life with autism sucks".

Actually though, at times it does suck.

But woe is me?  I think not.  Not me, not anyone I know.

If that is what people think, then they haven't a clue what "Life with Autism" is, and need to drop everything, sprint to the nearest family's house who actually has a child or two with autism, and spend a week.

The autism community is the strongest, bravest, most dedicated and driven community I've ever had the priviledge (yet unfortunate member card) of being a part of.

If the Christian community had half that drive and determination, there would be no one going to hell.

The misperception of interpreting reality to mean pity, is simply ignorance.

We do no one, let alone autism awareness, any favors by sugar-coating everything to the point that it's just natural and no biggie.

That we just need to deal with it and get over it.

We have and we are conquering it.

Every. Single. Day.

Because...

Autism. Is. Not. Natural.

Nor are the very real hardships that go along with it.

And I'll not ever sugarcoat that.

Ever.

So yeah, some may think reading about realism is merely a pity party, and that we are depressed, suicidal idiots who have nothing better to do that bring the rest of the world down with us, --- but you will be choosing to think that by yourself.

This pity-party has an R.S.V.P. of  Z.E.R.O.

There's a time and place to share the beauty of autism, and there's a time and place to share the realism of autism.

But never, ever, have any of us ever thrown a pity-party for autism.

We have no time.

We're too busy fighting it!

Woe be to that!

HOOYAH!

(smile)

When Autism Awareness month isn't so cute.

On this Blog, on my Facebook page, in any e-mail or conversation, -- I am very open and honest about everything in my life.  The good, the bad, and most often as others seem to take that honesty lately, - the ugly.  I simply know no other way to live.  Having a son who is non-verbal and who has autism, the real kind, not the cute Rainman kind, has taught me to be nothing less than real.  My son knows no other way to live, and therefore that's how I choose to live.

Granted, I make mistakes, do not live politicially correct, and many in my own Christian community probably frown on my forthcoming'ness.   Be that as it may.  Refer to opening paragraph for explanation.

And so for this month of April, National Autism Awareness month, I have upheld that standard of honesty, no matter how imperfect, no matter how.... inappropriate.

I'm just tired.

Tired of cutsie-campaigns for this month that do nothing but contribute to the crap.

And it makes me down-right cranky!

I'm tired of people thinking "Life with Autism" is something to just be aware of or accepted.

I'm tired of people thinking that if we all just "Light it up Blue" or "Walk Now" or any other cutsie-campaign like that -- the problem will be solved.

Well it won't.

You can light it up blue all you want, but it will take green to put that awareness into action. Not giving green by walking for those who light it up blue, but giving green to those local autism organizations and programs who actually help families all year round, and not just take from them and leave, one day a year.

This picture above can seem like a "cutsie" picture.   But it's anything but.  It represents what this month represents.  Autism. Awareness.

My husband and "other son" are at the Blue Lagoon in Huntsville, TX for Matt's Open Water Diving Certification. While I would have loved to have gone with them, I couldn't.

Autism awareness fact:  Many families have "other" son's. "Other" daughter's.  "Other" children. You know, those "other" children who are seen, who are there, but who are lost in the demands of autism.  Those who like my "other" typical son did for two solid years, which was to sit in the back of the car early mornings and late evenings, with his "cutsie cup of cereal" as we took the child with autism to special schools an hour away and special therapy appointments after a full day, etc.  The ones who give you Senior Graduation Announcements one day, causing you to sit there staring at them wondering how the hell that happened.  When that happened.  Guilt-ridden that finally in the life of the child with autism things have calmed to controlled chaos, instead of the uncontrolled chaos of the early years, and that you can finally spend time with that "other" child and get to know him. But then Wham! the Graduation Announcements stare at you as if satan himself is sarcastically sneering at you with a smile, saying ... it's too late.  

Autism awareness fact:  No respite, no trained attendant care provider to call upon for a day. And because of the non-cutsie brand of Autism Brandon has, it is not practical to take him with me, unless all I want to do is chase him away from the cliffs where he could fall in the water he's so enchanted by, and then drown.  Drown because I can't seem to teach him how to keep his mouth shut in the water, it's too powerful a sensory thing for him to 'feel' the water with his tongue.  That, coupled by the fact that he has spontaneous, unpredictable seizures, - and our every 45 minute "habit training" toilet training regimen, - and you see further why bringing him would not be fruitful. It would be nice to all be together, but then once again, the attention is on the child with autism, and the "other" child is just ignored.  Again.

Autism awareness fact:  My son is 17 years-old and still cannot be left alone.  He requires constant supervision. Every second, every minute, every hour, every day, every week, every month, every year, for his lifetime.  Parents with my son's non-cute kind of autism, might never get a chance to 'enjoy' empty-nest. 'Enjoy' their leisurely golden-years.... 

So, while it's just Brandon and I at home alone for yet another such weekend of "tag-team-family" -- I thought I would do some cleaning. Top on every family's list for a fun-filled weekend.

While I was downstairs cleaning one bathroom, Brandon apparently wandered to the upstairs bathroom that was inadvertently left unlocked.

Autism awareness fact:  Families live in perpetual lock-down.  Cabinets locked, Refrigerators locked. Stoves locked. Windows locked. Closets locked. Bedroom doors locked. Bathrooms locked. Windows locked. Doors locked. Gates locked. Pools locked. Garage doors locked.  That's not cute by the way, if you were smiling at that. We're not parents, we're freaking custodians walking around weighed down by ginormous keychains with keys to unlock everything.  Again, that's not cute. Try living your life wondering every waking moment if you remembered to lock something.  Try living your life having to unlock something to get anything. Try living your life with the guilt of being the one who perhaps in a moment of normal-ness which is not a luxury autism families can have, left the gate unlocked and the child wandered out and got lost. Or left the bathroom door unlocked and the bathroom and whole house was subsequently flooded.... (our house has been flooded five times now due to such 'normal' forgetfulness)

So when I heard the water running, I went upstairs. And the picture you see, is what I saw. Brandon, drawn to water, standing in the shower.  Now, while I did have a chuckle at that since I choose to laugh versus shoot myself, --- it was not in fact, very funny, or cute.

Autism awareness fact:  Children with autism are inextricably drawn to water. I'm not sure why, but the numbers of children with autism who have wandered off and drowned in someone's pool, a lake, etc -- are ginormous. Ginormous.

His non-cute brand of autism doesn't allow him the reminder to maybe take off your clothes first.  His non-cute brand of autism doesn't even tell him until after the third-degree burn because of his sensory dysfunction, that the water is on hot and will burn him.

Autism awareness fact:  Sometimes despite how many hours of Applied Behavior Analysis you've applied, they don't ever remember to take their clothes off before getting in shower.  So no, autism is not bad parenting, lazy parenting, or no parenting.  Sometimes despite how many thousands of dollars and thousands of miles you've spent on getting help for your child, your child is still autistic.  Better, but still autistic.  And that only covers those of us who do have a house to mortgage five times for those treatments.  Those of us who do have insurance and are lucky enough to have found the non-autism code that gets autism treatments paid for.  What about those who can't afford any intervention? 

His non-cute brand of autism doesn't tell him to tell mom if he wants to play in the water, so I can be there with him if he has a seizure and falls backward in that tub with perhaps water pouring in his mouth thus drowning him. We actually did experience that non-cute kind of autism a few years ago when he was playing in the backyard in the sprinkler and had a seizure, fell backward, where the water from the sprinkler filled his mouth, throat, lungs, - essentially drowning him.  The saving grace was God who allowed us to find him, do CPR, and revive him.

Autism awareness fact:  Autism is a deadly disorder.  I'm haunted by that anytime my son wanders from our locked-down house, anytime he's not supervised and could potentially run in front of a car he doesn't know to look for, anytime he has a seizure, and anytime he's near water.


So while I do think it is kinda neat to see pictures of all these buildings being lit up blue, it does little to highlight why we're actually doing it.  It makes this month of Autism Awareness seem nothing short of cute.

And autism is many things, but cute is not one of them. It's anything but special. It's irritating.  It's annoying. It's heartbreaking. It's enlightening. It's empowering. It's educational. It's Spiritual.  It's both heaven and hell.

Autism awareness fact:   Autism, again, is not Rainman. It's not special, nor is it a gift. The child may indeed be special in the blessing, the child is indeed a gift from God, - but make no mistake, the autism part isn't. It's not special to be the one home alone on a tag-team-family weekend, going stark raving mad by every light in the house being turned on and left on, by the incessant hummmmmmm of a child trying to re-set his internal rhythm disrupted by for him, seizures of the past week. It's wanting to sit down and watch your movie or read your book, but instead having to rewind Barney over and over. It's not being able to start, let alone finish a conversation with the voices in your head since there's no one else here to talk to, all because of the constant redirection needed.  "No hands when eating!" "Let's go to potty time!" "Turn off lights!"  "Shut door!" ....

Autism awareness fact:  Because of all the autism awareness facts listed above, and a whole slew more that I could add and add and add, it's no wonder why the divorce rate of families living "Life with Autism", is so stinkin high.  Heck, the thought has crossed my mind a time or two.  I mean really, for many, that would be the only way they get a break!  Get respite!  By the child with autism going to the other parent's house every other weekend!

 But no, thankfully an equally compelling autism awareness fact is that that which does not kill you, makes you stronger.  Same is true for many marriages.  The Autism, as in our marriage, highlights what truly matters in life. Making you focus on your faith, on your God, and on what a marriage is more than anything... a commitment.  For better or for worse. For richer or for poorer. In sickness and in health.  (Thank you Todd for honoring that commitment, even during the times when more than our love and my hotness, that commitment is what holds things together.)

I think that's why I love and fully support the National Autism Association so much.

They "get" autism.  They "get" what Autism Awareness month should mean.  Their Public Service Announcement for Autism Awareness is anything but cute.  It is provocative.  It is real.  It leaves you feeling like you were aware of a tragedy that you must do something about.  And while doing that, it shows us perhaps the most profound thing of all about this month:  Hopeism.

The Hopeism all of us in this tight-knit community of autism share.  The grit and determination that despite all the sucky and tragic things portrayed in that video, and that we each live with daily, there is hope.

We are not alone.

We will never give up.

It's what gets me through each day.

It's what puts into perspective this month of National Autism Awareness.

Please watch this video:

National Autism Association: Never Give Up

While the individual with autism may very well be cute, as my son is extremely ginormously cute, his autism isn't.

While you may think you are helping the cause by lighting something up blue, or wearing blue, or giving your green to that organization that's lighting it up blue, you're not.

Watch that video, and then find a local autism organization near you, in your community, who will use your green to directly help a family, again in your community, who needs some help, and the Hopeism that help provides for.


Thank you.....

Michelle M. Guppy

Light this up Blue..........

My friend Lenny had this picture on his Facebook profile in reference to autism and money wasted on genetic research.

I like it. Probably too much.  I keep staring at it and smiling.

Especially in light of April being National Autism Awareness Month, where a prominent autism organization has once again organized a "Light it up Blue" Autism Awareness publicity stunt, er, campaign.

I know I shoot my own foot by saying anything negative about a fellow autism organization.  I can hear people gasp and caution me that I shouldn't be "ruffling feathers".

No, I don't want to ruffle anyone's feathers.

No...

I want to pluck the damn things!

Another fellow disability advocate put on his status an interesting reflection about the "Light it up Blue" hoop'la, er, campaign, that will descend upon us like unwanted toxic-filled multiple vaccinations given without regard to safety or caution.  He said that years ago if he heard the term, "Light it up Blue" he would have immediately thought that K-Mart was having a Blue Light Sale.  But that now, he thinks of Autism.....

Yes, we have come far in autism awareness in that respect, but we've stagnated.

It's now nothing but awareness.  It's about spending so much time and effort and money on making everyone aware of autism, that we forget to fund the things the parents need for their children with autism, who everyone is being made aware of!

Where's the action?  It's one thing to know about autism, it's a totally other thing to actually do something about it.

I wish I could brag about that part of it for once.

All I think about in reference to the "Light it up Blue" event is the Vanish toilet bowl drop-in's that I use in my toilet.  And as it flushes and all that pretty blue water goes down the crapper, er toilet,  I think of all the money that organization raises from families like mine, struggling to even help our own kids, and how it's doing nothing but being flushed down the toilet bowl of someone's exorbitant salary, some lame genetic research that does nothing to help our kids today, (doubtful to help anyone tomorrow either) some outlandishly expensive office, marketing budgets, travel expenses, and salary after salary.

All I think about are the families who think they are walking for a cure, when instead they're walking to fund a corporation that gives little, if nothing, back to the state or city or community where the money was raised from.

If I seem angry at that, good.  Because I am.  Being angry and living angry are two different things and I think it's time a whole slew of autism parents start getting a bit angry about where their money is going when they give it.

Writing this as a mom of a 17-year old non-verbal son who has autism, bowel disease, and epilepsy, as well as being the founder and facilitator of a local autism organization -- gives me the right to be angry at that.

Just tonight, on the eve of this "Celebratory month" of "Lighting it up Blue" and "Being Aware" -- I was very aware that the thump and jackhammer sounds of my son's head and limbs repeatedly banging the wood floor during a Grand Mal -- could very well have been his last.  I was very aware that we found him in the middle of that Grand Mal seizure with the side of his face covered in blood, his head repeatedly hitting the floor in that small pool of blood from busting his lip as he hit the floor when the seizure started.  I'm aware that I have no more answers to any of the "autism issues" he has now, than when he was diagnosed.  I'm aware that every waking moment for a couple of years I've had to fight the public school system and eventually leave it because they were not equipped to educate him. I'm aware that it took me a decade to find a GI doctor who would, who could, properly evaluate, scope, diagnose, and treat his bowel disease. I'm aware that when, not if, my son manages to break out of our locked down house and wanders off, I will have no means, no equipment, to find him. Even though the technology is out there. If you can afford it. I'm aware that my Pediatrician still tries to get me to give my son shot after shot with every new-fangled not properly researched vaccine out there.  And I'm being made more aware that if I refuse to do so, I could be arrested for not complying. I'm aware that I still cannot get his seizures under control.  I'm aware that I have no consistent respite reprieves or attendant care to help do one of the three 8-hour shifts I've done non-stop for 15 years now.  I'm aware that I don't know what the hell to do when he ages out of the private school he's in. I'm aware that there are not nearly enough day programs that my son, being lower functioning, would qualify for, let alone if I could even afford it if I did find one and if he does qualify for it. I am aware though, that I could give him up to the state school or state institution, where he would get all the services and round-the-clock care he needs, too bad though that it would most likely mean he's being neglected, abused, or most likely as many others like him, murdered. And I'm most aware that I can never, ever die because the thought of who will care for him when I can't, or when I'm gone, is something that I simply cannot face and something that will simply have to defy the laws of nature.

So, somehow knowing that a few dozen buildings across the world are going to be lit up to represent those things I'm aware of, does little to comfort me, let alone help me.

What would comfort me, especially as a facilitator of an autism organization who works as a volunteer, no salary, just an office in my house,  --- is knowing that I could have a scholarship fund for parents like me, in my community, to draw from for ABA therapy for their child, an educational advocate to help them fight the public school, a chance for their child to go to a camp, a respite opportunity for the parents, a tracking device, etc.

Even though the parents that speak to me about what they need say one thing, whomever is speaking to the autism organization that says they speak for us, is hearing another thing in thinking we would rather have "Light it up Blue" than "Show us the Green".

I just don't get it.

Such opportunity.

Such waste.


So yeah, go ahead and light it up blue, wear blue, or be like me and flush blue, just please be very cautious and research where you give your green this month.

And do give your green this month.

Lot's of it.

To local autism organizations.


If you're in Houston, ask me which ones!

I'll tell ya!


Written by Michelle M. Guppy --
     ....because if Brandon M. Guppy could write this himself, he would.

The fine print in life with autism....

150 days...

On January 3, 2011 when as a family we spent the entire day, my Birthday, downtown as our son Matt went through the enlistment process for the U.S. Navy, - that casually remarked August 16th "Ship off to Boot Camp" date seemed so very far away.  But now, 150 days is awfully close to only 100 days. Then 50 days. Then 10 days. Then 1 day.

And so I find myself both laughing and crying on this "150 days to go" day, about all that "150" symbolizes to us, to me...

We, Todd and I, - refer to Matt lovingly and jokingly as "GT-150".

The "GT" being how gifted and talented he truly is.  Academically, physically, mentally, emotionally.  His IQ test results in the superior range, athletic ability in the amazing range of  how effortlessly, beautifully, and fast he swims through the water.  In how he is so much more mature in so many ways than his peers, and in how he just gets things.  I have always been truly confident that you could take Matt and dump him anywhere in the world, and he would find a way to survive.  He just has that much common sense and McGyver'ism about him.  If he were captured or kidnapped, he would talk them to death about anything and everything, and then he could escape.

The "150" being well....the other end of that.  The goofiness, those moments when we wonder if the IQ test person somehow got some numbers mixed up or something. Those moments when he's his father's son and not mine! The time at a swim meet when he was swimming the 200 freestyle, in first place, but for whatever reason when the million other things he thinks about while swimming a race distracted him to where he lost count of what lap he was on, caused him to think he was done after swimming only 150 meters of the race. Where he proceeded to take off his cap and goggles and wait for the others to finish.  When he realized what he did, he turned around and swam the last 50 meters and still placed.

That's when "GT-150" was born.  He can, and did, score in the top 95% of the nation in academic tests for the Navy, scoring high enough to qualify for the highest job there, Nuclear Engineering; - but yet forgets how many laps are in a 200 meter race, or where he put his wallet.

Yep, that's our son.

The one I love, we love...

The baby who was a joyous miracle to me. The toddler who exhausted me with his energizer, inquisitive self. The child who amazed and amused me. The teenager who (how much space do I have?) angered me, sharpened me, taught me, bewildered me, had patience with me, - made me proud, made me want to hang on tighter when I knew I should be gradually letting go,  - and the young man now at eighteen years old and enlisted in the Navy, who in 150 days and counting, will dare to test even further the limits of my mental and physically abilities to recover from him leaving for longer than he's ever been away from us in his entire life to this point!

All I can think about is whether or not in the time I had with him, I impressed those whispers of wisdom deep enough in his mind, in his heart, in his soul, -  for him to hear when I'm not there to remind him?

Did I focus too much on the times we yelled at times like when he and his friends threw a gatorade cap into a room full of testing students making them think a grenade just rolled in and was about to explode?"  (These and other brilliant spur-of-the-moment antics recorded on "The Chronicles of Guppy" at Goodson Middle School)

Did I tell him enough how proud I am of him in that he isn't someone disturbed who would actually throw a grenade in a classroom?

The culmination of eighteen years of parenting coming down to the last 150 days, until like it or not, that switch from being parent, to hopefully friend, is forever flipped.

Did I do it right?  Did God really entrust such a precious, perfect life, to someone as imperfect as me?

Did I focus too much on him being at church versus ensuring my house and how we lived, was a church?  So that wherever he finds himself with the Navy, or as a Seal, he will know and feel God's presence outside of a church he may not have the opportunity to attend?

More than whatever scripture he may or may not have memorized, did he memorize faith?  That when he's seemingly a lifetime away, perhaps feeling homesick, things aren't going his way, he will have that to cling to when no words come to mind?

And in this fast approaching adulthood, did we talk enough about the fact that you marry not just someone your flesh may desire, but someone who your heart cannot beat without?  A woman so closely connected to God that you would have to more fully seek Him to find her?

Somehow worrying if he would go to Kindergarten in pull-ups or whether or not he had on clean underwear and remembered to wash behind his ears -- seems so silly now!

How could I possibly pass a parenting final exam when there never were any "Parenting for Dummies" guides to study from?  I'm thinking that's where the Bible comes in as the ultimate parenting manual.  We have tried to convey to Matt to live for God, do as God did, think as God would.  Because if he tries to live for anything or anyone but God, do anything God wouldn't do, think as the world not God would, - then he'll find himself in more trouble than his Seal instructor or boss could ever dish out!

In wondering if eighteen years is enough time to do all a parent must do, I'm comforted by the fact that I've had just enough time to do it.  Each day with my son, is just enough time to make the most of.

And I'm equally comforted by the fact that for as many mistakes as we may have made as parents, me as his mother especially, I feel we did some things right.

Going against those standards of rush, rush, rush....have, have, have....

Choosing simplicity over complexity.

We held him back from starting school just as soon as the state said he could start, giving him an extra year to be a boy. Figuring he had the rest of his life to be a man!

Teaching him to not be so materialistic in thinking that things matter, but rather knowing just how much people matter.

Not allowing summer school to keep up with the standards set by....someone's standards.  In that life is all about academics and graduating with the most credits, the highest GPA.

Those things are important, but they're not everything.

Especially when you start viewing them as the only thing.

No, there's more to life.

There's the exploration of being a Tom Sawyer in the summer at Grandma's, - playing in the creek, laying on a log dangling over the creek.  There's the summer school of life.  Taking apart a washer to see how it works. Helping his dad fix cars, computers, plumbing, electrical outlets - so that he will know how to things other than take tests and do book reports.

I like to think we, meaning his father, did that part really well.

But even with that, I feel that the most credit for the man our son has become is of course God, but perhaps a close second to that, his brother's Autism.

It's taught him everything we never would have known to.

It's taught him everything he will need for the rest of his life.

It's taught him what even the most academic of academics can't!

It's taught him how to view others, who matters, what matters, how to overcome challenges, and most importantly it's taught him how to survive and how not to quit.

His brother has never, ever had the opportunity to quit autism.  His brother has never, ever had the opportunity to wake up thinking, "Screw this, it's too hard, not gonna do it, I quit...."  It's taught him that there are no mental health days for autism, no sick days from autism, no vacation away from autism, and no opportunity to just go AWOL from autism.

Knowing that right there, separates him from most adults who think they can just leave a financial burden, job, marriage, family, even their own life, -- when the going gets tough.

And so I feel confident that 150 days from now, when Matt's father (and the military personnel there that day available to help him), attempt to rip him out of my arms when it's time for him to walk out that door -- he too will know that no matter what situation he is in, no matter how many mistakes he's made, no matter how bleak the outlook is, no matter how many times he's tried and failed, and no matter how much pain he's in causing him to want to give up and quit --- he won't quit.

Funny how that fine print of autism is something that much like every other fine print, you don't ever notice or pay much attention to when you first read it.

How for us it has prevented one from possibly ever having the independence to leave home, while being the one thing that has truly equipped the other to live independently.

Damn you autism, thank you autism.

Tick tock, tick tock....

Ding!

  ~

The Fundraising Blues...

The Houston Autism Disability Network took a school-year off this school year.  Kinda.  We only stopped our monthly meetings for a time of regrouping, and for me as the facilitator, to spend this last Senior year with my son before he graduates and leaves for the Navy.

We did organize a special event here and there, and still answered as many e-mails and phone calls as we could. We still share information and attempt to keep our website current...

But as inspirations are supposed to do, they inspire you.

Recently being given "The Jefferson Award for Public Service" for our autism work in our area and our network for Texas -- has indeed been the inspiration needed to continue on in what we do, and to see if perhaps we could do it even better.

We are planning our meetings that will resume in September, we have worked out with Desperate for Respite, for that organization to provide childcare so parents can attend, --- but all that and more requires funding.

Our "Show me the Money" Scholarship Fund has been drained for a couple years now, and oh how I would love to resurrect that committee of community folks to resume awarding funds for parents who need ABA training, parents who need Advocates to attend ARD's with them, students with autism who need to go to social skills camp, - or even for the first time ever, - camp!

And that has me banging my head on my desk while singing the fundraising-idea blues!

Let's see....

I could have my staff research and write grants in attempts to apply for and be awarded money... But no, that won't work.  We don't have staff and all our time is spent in trying to keep up with helping parents who need help now and not an answering machine because those organizations who do have staff and money with which to make more money with, are too busy off making that more money!

Or...

I could organize a "walk" for Houston, where I brainwash everyone I know to form teams to raise money to cure autism, when it's really mostly for me to send to New York to pay for enormous salaries and offices and travel expenses; and only maybe if anything, return 10% of that back to helping the people, the community, the state where it was raised from.

But no, nope, - can't do that one.  Wouldn't do that one!   It's already being done by someone else!

(shameful sarcasm)


Let's see what else I could do...

I could organize an event and bring in an inspirational speaker, charge money to parents of children with autism and disabilities so they could be inspired, because if there ever was a group needing to attend an inspirational event to be inspired, it would be therm, ---  to cover the cost of that, and then hope they were so inspired they will give me even more of the money they don't have in the first place because they are parents of children with autism and disabilities and all their spare money goes toward that!

That was one of the better ideas I've had recently.  And I knew who I wanted.  Marcus Luttrell.  My typical son Matt loves him.  Marcus is his hero.  Marcus Luttrell is the lone survivor of a Navy Seal team mission. He wrote the bestselling book "Lone Survivor" and speaks all across the nation.  He's even featured in the video "The Shape I'm In".  An awesome inspirational song and video, you really must watch it.

He would have been a great fit.  The stress autism parents experience, has been linked to the stress of combat soldiers in war.  So who better to speak to warrior parents than a true veteran of war!?

But, when I finally got in touch with his talent agency, I found he was booked for a solid year already!
The guy asked me what I was wanting Marcus for, and when I explained, he said he was also the talent agency for the family the movie "Blind Side" was made about.  And that they were available!

Great!  Until he told me how much.  While choking between the laughter, I thanked him but said on our budget the best I could do was just rent the movie "Blind Side" and sell popcorn for $5 a bucket as a fundraiser!   Assuming that is, that there would be people out there who haven't already seen the movie.

So yeah, I'm not getting very far on the whole fundraising thing beyond just saying, "Folks, we need your donations to do what we do...."

Somehow it shouldn't be so hard for a community to understand that...

It definitely shouldn't be that hard for National Autism Organizations to understand that.

That it's not so much about throwing all our money toward the big picture of a cure for tomorrow, that we forget that in the meantime there are people in the little picture who need funding and help to simply survive today.

The Jefferson Award was all about just that.  It was about community.  It was about helping someone today. About one person doing what they can. About bringing everyone together to pitch in where they can and how they can.  And if they don't have time, how they can still be a part of it by giving their money. As little, or as much, as they can.  I've had two checks come in this month...  They both exemplified just that.  One from a company that could give $1000.00.  Another from a parent who could only give $35.00.  Both made an equal impact on what we do.

Then there's the issue of there being so many organizations that do good, how do you get past competing with them?

That was the basis of making our chapter known as the Houston Autism Disability Network.  We are not just one thing, one entity.  Even though we are.  But rather we are the representation of a community.  Of many people and organizations coming together for a common purpose.  I would love for our scholarship fund to represent that as well!  Funding from all organizations, for the sole purpose of helping the people we all represent.

With our scholarship fund, we have helped other organizations that directly help parents that we are not equipped to help.  We gave scholarship funds to Liberty Path for them to use in marriage counseling for parents of children who have autism as one example.

Another example is partnering with organizations like Desperate for Respite.  They are willing to provide childcare for our autism/disability meetings -- but again, they need funding to do that as well!

Ahhhhh!

It frustrates me to no end to know that come October, "the" walk event, thousands upon thousands (as compared to the hundreds we are lucky enough to get) of dollars will be raised --- enough money to run each of our local organizations for five years no doubt -- and not any of it will go to directly serving the very people who walked for it.  Donated toward it.  The very community it was raised from.  Heck, the very state it was raised from.

And that's what's got me singing the fundraising blues in wondering when that boomerang is ever going to come back around to the person autism fundraising is supposed to be about....  the person with autism who is here right here, right now, in this state, in this town, in this community.  And their family who needs help right here right now.