Fourteen years ago, we had few answers and fewer resources, and even fewer theory's about Autism. Our boys were 1 out of every 500! (Which did not take a rocket scientist to figure out was insane THEN)
OUR CHILDREN WERE RARE............. today, 1 in 88 have Autism!
We found each other, along with many others, sharing our stories. The stories of how our children where 'with us'. The stories, of how they were swept away from us. The stories that they remained, but what they were able to do, how they 'interacted' with us was gone............. replaced by sleepless nights, yelling, screaming, tantrums..............very leaky guts!
I have no idea how even today, how to tell anyone in anyway the horror of being able to hold and cuddle a child, then days later, not only can you not touch that child. Not because, you do not want to touch them, YOU long to hold them, stroke their hair, comb their hair, cut their hair.................. You can no longer reach them or for them.............
My oldest child Michael would have been six at the time I met Michelle. She would post to the lists we were on. She would talk about studies and research, doctor's visits. And in each and every post, blog or back then 'e group' e mail, I knew I had found a "Soul Sister". She typed what I felt! She expressed the journey so openly, that I only wished to forget.
Michelle and I 'joined' efforts on two projects, co launched at the same time by other parents. We worked on line, almost daily for over a year. We made quilt squares............Begged for pictures............. Wrote Prayers and Positive words...............
We met twice face to face. Once in Houston, Texas. Once in DC. She always was a 'force' to be dealt with! WE, and others would 'stop' the sick madness! (I was the 'Crazy' friend, that thought we could make the world see our children.) God knows we tried.
She blew bubbles as I spoke. They where to symbolize the NUMBERS, of those 'blowing in the wind', with Autism.
Because of my life events, I signed off from the on line groups. Michelle and many other good friends I left behind. This past fall I reconnected with those 'sisters'. How our stories are now so different, but yet still so the same! A lot has happened in a decade!
It is rare event in life to know someone states away, that can type WORD FOR WORD how you feel! Michelle just GETS IT! How does she 'capture' the moment so well? Then I realized, that is what she does............ SHE LIVES MOMENT BY MOMENT, just like I do!!!!!!!!!!!!!! Most Mom's have their days planned, vacations planned, holidays planned.............. For Moms like us............. many years were spent, not knowing WHAT we would wake up to. We survived without showers and meals and rest and sleep and dental appointments. For us to go to the Dr. would have meant 'no pulse' for a month or more' WE WERE on a MISSION!
We are still on that Mission!
Will our children have a good day, a bad day............ will they put clothing on and let it on for 5 minutes! Will they try to wonder off. Will all people in their school respect and treat them well. For me, would I slide in poop again, because my son did not make a 'successful' trip in the middle of the night to the toilet, even though, you heard the toilet flush at 4: AM! (and yes, after that happened MORE than once, while half awake............a parents forgets to look where they are walking, as you run to your child's aide!)
Brandon Guppy............... my dearest Brandon Guppy............. Has touched more lives and made more differences for so many people, that he has no care of knowing or meeting. Brandon, has taught his Mother, how to speak for him and us.............all of us............ How will Brandon ever know the thousands of lives he made better. He teaches us everyday through Michelle's post!
Life is as simple as you make it. Some days, it is about sleeping. Some days, maybe life is about enjoying the cool breeze at face level! For Brandon, some days it is about bouncing! Brandon wants for nothing, longs for nothing.............. he loves his music with the base up LOUD!............. (who doesn't!)
He does not, 'talk back' or give his mother attitude nor mouth off. His parents walk in great FAITH, to keep him safe! (Autism has a way of bringing you to your knee's, for one reason or another!) Brandon and my Son Michael have taught me more than any book............ more than any doctor............. More than anyone! They teach us unconditional love! They have no worries. They fear nothing! I know many adults, who will never know the love, that our children give daily!
Our lives are full. We are never bored!
My Mothers heart breaks that when Michelle and I reconnected, we could not LAUGH about the good old days! How we are not sharing their graduation photo's, girlfriend photo's, prom pictures, nor the horror of the first time they took the car out! How they cut school, got a bad grade or even cheated on a test. We get to go to IEP's and ETR's................ instead of Senior Award Night. We get to see if our children have their LRE's. No child left behind? ............ LOL..............our son's were not left behind, they were pushed aside by a generation of experts claiming Autism was our fault. Will our sons have to live a lifetime in a WORLD that is in denial of Autism???
I know, that Michelle enjoyed all of Matt's teen years 20 fold over the average parent. I know, not a moment was wasted that she does not value and see, Brandon's every smile, and every grin! She will pray the whole time Matt tells her, he is about to be a dad himself someday!
Neither of us choose Autism. I am sure our son's did not have it on their 'to do lists' either! We live it every day. And because of it, we value the sunsets, the time alone with spouses, the REALLY important things that life offers! We read our Bibles. We attend church because it is a blessing when we can. We have Real Friends! We have other Great Son's........... we will never, ever, take for granted!
WE Thank God, for the Good, the Bad and the UGLY.................
And both of us still long for REAL ANSWERS, (minus blue light bulbs and ribbons)
We want no one else to ever 'join' our club................. We have enough members already! :)
We stand ready to help the next parent and still have no real help or advice to give them....................
We will offer an ear, a safe place to vent..............
We will 'wash, rinse and repeat'...................
Until a day..............not yet known to us, that we will be done and our "Mission Accomplished."
I know God has our backs.
He makes up for all we lack.
Written by Carol J. Fruschella
~~~~~~~~~~~~
