National Autism Awareness Month: Fact of the Day #11
Autism is a spectrum disorder. When you have met one person with autism, you have only met one person with autism.
Indeed Ben is a mysterious being! Sometimes I seriously undermine his level of understanding... For example, as I mentioned yesterday, he has been sick... In our church (if I happen to have readers not members of our faith!) we believe in the laying on of hands for the sick and afflicted through the power of the priesthood, which men of our church hold.
Ben kept asking for a blessing, so he could feel better. He understands faith and had faith to be healed! So Bishop Henstrom and Brother Youngquist came over and gave him a blessing. (Keith is out of town) Ben was so happy! What a sweet boy! He is such a great reminder of what simple faith can do.
And no, his autism doesn't define or constrain him. He can still commune with his Heavenly Father. He might have Autism, but Autism doesn't have him.
Autism might keep him from doing certain things, but in the end, the most important things, Ben can do! So what is Autism? Maybe it is a neuro-biological condition, sure... But to me, after almost 18 years of puzzling over"it", what might have caused "it", what could cure "it", etc,
--and not that those aren't good questions -- the most essential question is what am I going to do with "it"?
What is autism for me? It is an occasion to arise and shine forth, borrowing from the youth theme :) Or to step up to the plate and fill the mesure of my creation. For this purpose I was sent to this earth, to help another child of God on his way back to God. And so I shall and I must and not falter. Autism has colored every facets of our family life, it has molded my girls into what they are today and I think they turned out okay ;) We aren't perfect but we are trying and God makes up the rest!
Here's a pic of the three best buddies, taken for Camie's graduation, June 2012!
And another blast from the past... Just remember, I wrote this in 2008, so the timing is off when I say " x number of years ago..."
Camille’s accident
July 1995 If only I had read my patriarchal blessing better, maybe I wouldn’t have married at all or had any children. I am just kidding of course, I do know the commandments. My patriarchal blessing is in French, the most beautiful language in the world, some say. I don’t know, to me it is just my native tongue so it is the language I understand the best. Remarkably, every word that might be translated into “trial,” “tribulation”, “problem,” “ordeal,” or “sorrow” is in the blessing I received.
Again Father is so merciful. He warns us of things to come so we can be prepared. I know I have to go through these things to be who I need to become. Back at the time of Ben’s birth, I thought I had already gone through the trials mentioned in my patriarchal blessing. My conversion hadn’t been a smooth one. My parents had been very much against it.
When Ben was born my relationship with them was still strained but somewhat friendlier. I thought, “They’ll love this little munchkin, they love blond blue-eyed boys!” Being ever the classic Mediterranean girls, Camille and I are brown-eyed brunettes. It’s taken me a long time to appreciate those features. I felt my parents always liked my brother better, he has blond hair and green eyes. I know now that it isn't true, my parents love me the way I am... Foolish young girl that I was.
So here I was holding my golden boy, my ticket back to my parents good graces, so I thought... He was finally asleep and I could dream, couldn’t I? The nightmare didn’t start until I got back from the hospital: the French girl, her seventeen month old, her newborn and her husband who works fourteen hour shifts at the mine. Twelve and a half years later I can see plain as day the combination was a recipe for disaster.
What on earth sustained me when life was so rough? I know for a surety that the Lord’s hand upheld me. I am reminded of the poem “Footsteps”... When I only see one set of footsteps on the sand of my life, it was then that the Lord was carrying me. That is exactly how I think back on that period of time. There’s no other way to explain it. Indeed the Lord and Heavenly Father carried me, They carried us, all five of us... Their strength and understanding never fails.
Less than a week after we got there Camille got bit to the face by my parents’ Husky dog, starting a chain of events that I could never have in a million years foretold.
My dad had been struggling with my choices since I joined the church, but this sent him into a bigger loop. “Why would God allow this to happen? Why would his beloved dog bite his beloved granddaughter? It must be because of this evil church his daughter had joined...” And here I was, back at square one as far as my relation with my parents was concerned. My golden one month old hadn’t managed to do one thing for it, I had managed to ruin it myself singlehandedly. Not to mention the facts that now my beautiful Camille needed reconstructive surgery and was going to be in so much pain thanks to her "unfaithful" mom.
Autism is a spectrum disorder. When you have met one person with autism, you have only met one person with autism.
Indeed Ben is a mysterious being! Sometimes I seriously undermine his level of understanding... For example, as I mentioned yesterday, he has been sick... In our church (if I happen to have readers not members of our faith!) we believe in the laying on of hands for the sick and afflicted through the power of the priesthood, which men of our church hold.
And no, his autism doesn't define or constrain him. He can still commune with his Heavenly Father. He might have Autism, but Autism doesn't have him.
What is autism for me? It is an occasion to arise and shine forth, borrowing from the youth theme :) Or to step up to the plate and fill the mesure of my creation. For this purpose I was sent to this earth, to help another child of God on his way back to God. And so I shall and I must and not falter. Autism has colored every facets of our family life, it has molded my girls into what they are today and I think they turned out okay ;) We aren't perfect but we are trying and God makes up the rest!
Here's a pic of the three best buddies, taken for Camie's graduation, June 2012!
July 1995
Again Father is so merciful. He warns us of things to come so we can be prepared. I know I have to go through these things to be who I need to become. Back at the time of Ben’s birth, I thought I had already gone through the trials mentioned in my patriarchal blessing. My conversion hadn’t been a smooth one. My parents had been very much against it.
When Ben was born my relationship with them was still strained but somewhat friendlier. I thought, “They’ll love this little munchkin, they love blond blue-eyed boys!” Being ever the classic Mediterranean girls, Camille and I are brown-eyed brunettes. It’s taken me a long time to appreciate those features. I felt my parents always liked my brother better, he has blond hair and green eyes. I know now that it isn't true, my parents love me the way I am... Foolish young girl that I was.
So here I was holding my golden boy, my ticket back to my parents good graces, so I thought... He was finally asleep and I could dream, couldn’t I? The nightmare didn’t start until I got back from the hospital: the French girl, her seventeen month old, her newborn and her husband who works fourteen hour shifts at the mine. Twelve and a half years later I can see plain as day the combination was a recipe for disaster.
I had been living in the United States for almost four years by the time Ben was born. I was fluent in the English language but I still wasn’t fully acclimated to the American culture. I had been a member of The Church of Jesus Christ of Latter Days Saints only four years and being a member of the Church is far more than just attending meetings and paying tithing. Keith had just been released from serving in the Bishopric of our ward and I from serving in the Relief Society presidency but I was an ocean away from my family and France with two new babies, a stranger in a strange land.
Benjamin was a tough baby who didn’t like to be put down. He wanted to be held constantly. He wanted to be rocked and he refused bottles so of course I was the only one who could feed him. And he only wanted to fall asleep snuggled into his satin-lined snow suit, and he exhibited countless other idiosyncracies I am trying to forget...
Meanwhile, Camille was only a bigger baby herself. What’s more, I had to go back to work part time when Ben was only three months old. With two children now, our plans for me to stay home with Camille until Keith’s graduation didn’t work out, I had to put my advanced degree to work and go back to teaching High School French.
What on earth sustained me when life was so rough? I know for a surety that the Lord’s hand upheld me. I am reminded of the poem “Footsteps”... When I only see one set of footsteps on the sand of my life, it was then that the Lord was carrying me. That is exactly how I think back on that period of time. There’s no other way to explain it. Indeed the Lord and Heavenly Father carried me, They carried us, all five of us... Their strength and understanding never fails.
When Benjamin was one month old, I got so homesick for France and I wanted to believe so badly in my dream that my blond little boy would help me mend the fragile relationship with my parents that I decided we should make the trip to the South of France. I had no help with the kids in Salt Lake while Keith worked long hours at Barney’s Canyon Mine and Ben was increasingly tough to deal with.
I thought six weeks in the South of France would be just the ticket for me to recover from childbirth. Keith would leave after a week and I would go back to Salt Lake with the kids by myself. So we made the trek to Europe, it took twenty-four hours from Salt Lake City to Le Grau-Du-Roi, where my parents lived.
Less than a week after we got there Camille got bit to the face by my parents’ Husky dog, starting a chain of events that I could never have in a million years foretold.
We had just come back from the beach, or so I kept telling myself... I was still carrying extra weight from Ben’s pregnancy so I felt heavy and it was hot and so much more humid than in Salt Lake. I didn’t want to rush and get dressed again and put my garments back on. I felt somewhat rebellious inside.
“Why do I have to put extra clothing on when everyone else is wearing a bikini, my swimsuit is modest anyway.” So I stayed in my swimsuit, Camie got bit. In hindsight I feel she wasn’t protected, because I wasn’t keeping my covenants.
My dad had been struggling with my choices since I joined the church, but this sent him into a bigger loop. “Why would God allow this to happen? Why would his beloved dog bite his beloved granddaughter? It must be because of this evil church his daughter had joined...” And here I was, back at square one as far as my relation with my parents was concerned. My golden one month old hadn’t managed to do one thing for it, I had managed to ruin it myself singlehandedly. Not to mention the facts that now my beautiful Camille needed reconstructive surgery and was going to be in so much pain thanks to her "unfaithful" mom.
I fell into a deep depression and returned to Salt Lake with Keith after spending one week in France. It has been twelve and half years and I have yet to set foot in my country again...
Pennsylvania, Our New Home
May 1996 to August 1996
Camille was two and a half when we moved to Pennsylvania; she called it Pencilbeya and was so thrilled to “fly there on an airplane”. Ben’s ever present ear infections made it difficult to fly but we got there. I’ll forever remember that "lay over" in Scranton where we only landed for a handful of minutes and took off again. Were they just trying to make things more difficult for us with more take offs and landings? I was mad as a mama hornet with my baby bumble bee on my lap. I remember Ben being pretty good on the flights though, another blessing from Heavenly Father no doubt.
Pennsylvania was as green as Utah had been brown to this French Southern girl’s eyes. At first all the trees made me claustrophobic. I couldn’t see the horizon as I had been able to in Utah. I would get hopelessly lost with both my little children strapped in their car seats but by some miracle they wouldn’t really fuss, maybe it was all the greenery that was captivating to them. Or we had angels looking over us. Or they could feel my anxiety because some days I would get very lost and my map reading skills never improved. Especially after our map got a huge hole put through it from folding and refolding it every which way...
My praying skills however improved drastically. Many times when I drove aimlessly in my new Pennsylvania town, I felt the Lord guiding me, telling me where to go, where to turn and I would miraculously end up where I could recognize a road and find my way back or find the way where I wanted to go. I learned faster ways to go from point A to point B, I explored Allentown and Bethlehem, I found places that I didn’t know existed while I was “lost”. And I prayed, hard. I prayed very hard. I didn’t like to be lost in a strange place. But it would end up being good practice for later. When I would be lost in another strange place, but not a tangible place this time.
We bought a home about six weeks after we got there. Another miracle of sorts: if you consider the fact that we had “ridden the loans” and never made any real money for so many years. So the Lord blessed us four years after our Temple marriage and two sweet children to buy our first little house in Bethlehem, Pennsylvania.
Benjamin was one, still not walking and not showing much interest in that, crawling was sufficient to him. He babbled but Camie did all the talking for him. That was so different from my girl! Camille was so talkative at that age already and obviously she was running at twelve months, places to go, people to see... I was confused, but they say you shouldn’t compare your children. I would try not to.
They were so different even outwardly anyway: Camie is a real yummy brownie if you will, all chocolate and Ben is a sandy sugar cookie. When I took them to their check ups, the nurse could evidently see Camie was my baby girl. The really sweet nurses would say: “oh, and the little boy must look like his daddy” and the really nasty ones looked at him like I must have adopted him! “No, thanks, he hurt enough when he came out”, was my wordless answer.
That made me think sometimes that maybe his very traumatic birth had something to do with the way he was... Maybe I damaged him... Maybe he thought I didn’t want him, the way I screamed in pain the night he was born. Then again, I was in excruciating pain. He was a whole week late. It isn’t like he was thrilled to come into the world either. “There must be some other explanation for the troubles we are facing. Benjamin is just a quirky little fellow. He’ll catch up to his exceptional bigger sister and be just as brilliant”, I kept telling myself.
About the guilt that parents of exceptional children feel –and by exceptional, I mean handicapped in any way– , Elder Packer has said this, very clearly and also very movingly: “I must... with emphasis clarify this point: It is natural for parents with handicapped children to ask themselves, “What did we do wrong?” The idea that all suffering is somehow the direct result of sin has been taught since ancient times. It is false doctrine. That notion was even accepted by some of the early disciples until the Lord corrected them.” Jesus Christ himself declared that not all suffering is the result of sin, therefore I hadn’t done anything wrong to bring this upon Ben. Elder Packer also declared: “There is little room for feelings of guilt in connection with handicaps... Afflictions come to the innocent.” (Ensign, May 1991) What relief that is for us parents of disabled children!
One sunny afternoon we were all in the backyard and I gave him his very first lollipop. He enjoyed it but got his little chubby hands all sticky. Not walking yet, he tried to crawl on the grass but his sticky hands picked up minute dead leaves. He stopped, sat on his bottom, looked at his hands. The world seemed to stand still for half a second before the storm burst. He held his hands towards me and, his scrunched up little face turning red, let out a scream that would pierce our eardrums. He just couldn’t tolerate the feel of the ever so slightly prickly dead grass on his soft baby hands.
I knew right there something more was at work in my little boy’s soul, but what was it? I would learn much later that those issues are called sensory issues. They have to do when one’s body doesn’t perceive things in the same way as you and I do. Most people tolerate clothing tags just fine, the feel of grass against their legs, caresses or hugs. Other people cannot stand those feelings. Those people have sensory issues. It hadn’t been apparent with Ben until now. But the grass incident made it plain that something was amiss in his sensory system.
Ben had always loved to be rocked to sleep and particularly when he was an infant, he had insisted on falling asleep snug in his satin-lined snowsuit. I had not paid much attention to that then. I was a sleep deprived new mother! But all these things are “symptoms” of a sensory system not being quite in check. It is alright for a baby to be rocked to sleep, but you see, if you are still rocking your three year old –swaddled in a blanket– to sleep, you should start wondering. At the time of the grass incident, Ben was still only just over a year old so I didn’t worry about still rocking him to sleep. And so life went on...
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