On being forged into a warrior mom

If I could summarize our journey from Hell to HOPEISM, it would be in my faith, which I call HOPEISM. It has been my weapon of choice to get me through each battle I have had to fight in my mission to win our war called life with autism and seizures. Vaccine injury to be more specific. It would also be in committing to heart, soul, & mind the words and motto's from Forged, NDCQ, the Lone Survivor, and Levi Lusko in his book, "Through the Eyes of a Lion." I will be forever grateful to the inspiration, encouragement, and mental fortitude found through all of them collectively. Because of that, I am not allowing this tragedy of vaccine injury that has come into our lives to be an obstacle to being used by God. I am instead turning it into an opportunity to be used like never before!

This blog is dedicated to Brandon. His life has been forged by difficulty, obstacles, & all too often because of seizures - pain, blood, broken teeth, & broken bones. Yet through all that he has shown such fortitude. The bravery, strength, & resilience of a true warrior. He taught me that having strength through adversity means that even if you lose every battle, like the Lone Survivor, you never quit fighting until you win the war. That in the words of "NDCQ," you keep "dreaming," keep "daring," & keep "doing." As Team Guppy has yet to be able to escape vaccine injury, we have no choice but to as Levi Lusko writes, "Run toward the Roar." God has indeed given us such incredible power in enduring such impossible pain.

Some days the HOPEISM in that simply takes my breath away.

April 6, 2011

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 -

        Michelle M. Guppy

Welcome to Holland 

Welcome to Beiruit 


Mary Beth said...

well said. it's a very manic world whether you like it or not. the more I learn about autism the less I know but maybe i am learning more about me in the process anyway. i think people with special needs kiddos understand the word "journey" more so than anyone else. you don't really know where you are going....you just go...

Terra Howard said...

So true! Mu son is in the category I often here referred to as Autsim-lite. Asperger, gut/immune issues. Tantrums, sensory, genius, maddening, loving, impatient, wise beyond his years, socially unaware, can't make a friend, most literal person in the world, History loving child. Sometimes I shudder when I hear "lite". It seems heavy to me. I know it could alway be worse..I know! But, it feels heavy when he has a bad day. Or gets sick for 3 weeks instead of 3 days, or can't ride a bike, or swim, or comes home crying because he's been made fun of so badly.

Sue H. said...

Michelle - I had never seen your blog until your post about Autism Awareness Month. Many of the things you write about apply to me as well. My son is pretty low-functioning and sometimes our home life is hellish. But the good times are so sweet that it's okay. And every time I think that I can't take another day, one of those good times reminds me that I am strong enough to carry on. Thank you.

karen said...

I love both Holland and Beiruit,I've lived in both. however I must say newbies need the holland story. It takes time, usually years, to process and sort thru this wealth of information and decifer what works best not only for your child, but to learn how to find the joy. So yes its a continual cycle of emotions. Laughing at myself is not something that comes natural, so I am blessed that my husband and kids do it for me. Next to the Lord, it's what keeps me going. My autistic son's behaviors can extremely disruptive, but after a certain point...It doesn't matter. Its those times that you cherish. All those times when my child was under the pews at church continually escaping run down the isle,turn the spotlight on the pastor or simply never sit still or be quiet in our secluded balcony hideout are priceless memories. He is a practical joker at heart and those awkward public moments are no longer embarrasements or disasters, but the laugh of the party. People who know us love the antics our now 18 yr autistic son pulls. I could care less what others think. When you're in an elevator crammed full of people, a few heavy weights included, and your son announces "You know, this elevator only holds 3000 lbs" Its hysterical. Is it rude? sure. Is it inappropriate, yes. I correct him,of course. You get over the embarrassment and learn to laugh.