There were always different ways of getting "there" or maybe chosing a different destination. These are the challenges. There are no answers, only more questions. Those friends who stayed the course were true friends. Those friends understood that it was worth it to bend an evening, a discussion, a dinner, an appointment, to close a phone call. Jeffrey was always for us a priority and the only choice.
Life has been too demanding. Jeffrey has been too demanding. Thoughts about autism are pushed aside for the pure need for skills of surviving. Six seizures in a row with vomiting and lurching around out of control. The bed linen changed in every bed and not able to stay ahead of the laundry. Falling asleep exhausted next to my son even though there is phlemy vomit still staining the quilt. Sometimes pristine cleanliness does not matter. Sleep does.
This does not happen frequently but when it does, it disintegrates quickly.
Obsessions that become violent. This is nothing new. Jeffrey knows he cannot control himself sometimes. He tells me “keys, keys” not so WE will go out, but so I will go out. I can’t go far. That is unthinkable. I take a book and occasionally my glass of wine, start the car, drive to the cull-de-sac behind the rampant bushy growth and pines at the front of the property, and sit in silence. I can just make out the front lights of the house and would see if the security light flicked on, which would mean Jeffrey is in the driveway. But usually the cyclical fixation is broken somewhat, and in 20 minutes I find Jeffrey involved watching a video, or on the computer, or just sitting in his bed hugging his quilt.
Jeffrey knows I would never really LEAVE. I think he understands our bonds and my commitment, which is why it is often pushed to the limit. Mommy should always be able to fix everything. Since the demise of the newest imac when the process of my going out the door was supposed to break the cycle, but instead the imac was thrown on the front porch by my son, I have urged David NOT to buy the newest model. We settled for my old desktop tower, hooked permanently to an Ethernet internet link, and slower, but less likely to go flakey.
Jeffrey is dealing better and better with his father’s frequent overseas trips. We do calendar watching for sure, but we also have had a few good hugs and tickles last trip. It has to do with the confidence level. Yes, Daddy always comes back. Yes, Mommy always comes back. No matter how many times that is reiterated, and backed by fact, it has to be proved AGAIN. But that IS autism.
Now with an adult with autism, it is hard to engage the understanding of the public. Children have an appeal, no matter what. Their behaviors can be outrageous, but still, there is a level of tolerance because they ARE children. Adults with outrageous behaviors do not fare so well. They are a threat: certainly to accepted manners, but now in this terrorist spooked age, to security. We don’t go many places.
I have been playing with the visual image of autism like the high tide. It is viscous like water, undefineable to many, and subtle. If you were to visualize a group of children playing in a cove on the edge of the sea, you might not immediately notice the child with autism. But on closer observation, this child’s castle in the sand would be less defined, and more likely to crumble. There might be some towers perfectly formed by well-packed sand (perhaps with the supervision of a loving aid) and others seemingly plunked at random in the pile. But there would be a sense of ownership. My sandcastle.
As the tide rises and the other children abandon their efforts for farther up the beach, or even abandon the castle building for a walk, a snack, or a swim, the child with autism will probably steadfastly stay by that castle, with a persistence that is senseless. Wave by wave, the tide will creep in and the child, without guidance, understanding and love, will loose his efforts, and quite frankly could drown in the unfocussed tide of life. Too much coming in, too hard to fight, too hard to run away, fear, fear, inability to communicate.
Is it no wonder this child, now a man, becomes unglued?
Furthermore this adult, finding another cove and building another sand castle will go through the same process again. No amount of reason and explanation will link that old sand castle and the tide coming in to the new castle and the tide coming in. It will all be lost again, the fear and the frustrations will come again, the violence, and the fear.
It is no wonder that we as parents and caregivers become depressed. We can see what is coming again and we are helpless to stop it.
I have gotten out of the “loop” of the newest treatments, the most noted advocates, the best successes. Because as the parent of 23 years I already know what will happen again and again, and it is best not to dwell on it – “fixate” as my son does. It is just best to ride the tide as best as we can.
I heard an interesting fact on the radio recently, about the medical pronouncements of the best scholars of the day during the 14th and 15th centuries pertaining to the Black Plague. It was decided that bathing opened the pores of the body, and therefore to avoid contracting the disease, it was best to avoid all contact with water, which was generally in public baths.
I feel instinctively, that we have as comparatively little insight into the chemistry and interactions of the brain in autism. Great pronouncements of what is good and bad, what is effective, what is right, are made. But the conclusions are not always definitive. I’m sure that given a database of bathers and non-bathers from the 14th century, one could have made a deduction that bathers did contract the plague more often. You just had to find the right bathers who bathed with already infected bathers, because not too many people had their own bath. And thus now we make pronouncements about seizure related medications, about behavioral procedures, and about success in early intervention.
In our case, we had all the early intervention that could be, but given the deluge of verbal based education beginning with the high school years, and the added stress of puberty and peer disapproval, our son crumbled. He avidly watches science videos, and probably memorizes a great number of facts, but without the processing system and retrieval system, he will not be able to apply this to any vocation, job, or even the simple action of pouring milk in a glass.
Pouring milk in a glass is a disaster. Whatever liquid is in the gallon of milk must be made to fit into the glass which is sitting on the counter. Once the overflow begins, there is no reaction to stop. But the container must be emptied. A clear solution would be to store our milk in pint bottles in the refrigerator. But somehow, I haven’t gotten that on the schedule of the day. It is easier to insist that Jeffrey ASK for milk. I am creating dependency according to some philosophies, but it is easier to do that than to intercede with preplanned pint-sized bottles measured to order each time we buy a gallon of milk. Just please do not let me sleep through another midnight thirst for milk.
I look at Jeffrey at 23 and marvel. At that age I was married and pursuing my career as much as possible while my husband was burning out his eyes in grad-school. How adult I felt. What does Jeffrey feel? He is very much the little boy at times, snuggling next to me with his mustachioed grin, and insisting on piling every quilt in the house over us both. He is a very loving being. He needs all his milestones in place in time and space. He needs his trip to the library. He needs his fries and nuggets from Wendy’s . He has beautiful eyes, and I wish I could understand the mystery of what lies behind them.
There is a big difference 17 years further down the road, and yet no difference at all. Jeffrey was Jeffrey. He never quite aged to 40. He was a gift to our world in so many ways. My husband and I both teach. Jeffrey dramatically changed our approaches and our responses in the world of instruction, mentorship, and trust. Jeffrey taught us to look farther than outward appearances. Jeffrey taught us patience and an awareness that there are different talents in learning styles and each needs respect. Jeffrey taught us that determination is everything, and that living each day with a smile at the end of it will give you courage for the one that follows. Jeffrey taught us that it was ok to think about our own professional goals sometimes, but that we needed to share some of that with him however we could. Jeffrey was proud of HIS parents. We were HIS Daddy and HIS Mommy first and foremost. WE are forever grateful.
As I look up at the infinity of the stars and consider how small we are in our little accomplishments and efforts, I am so grateful that Jeffrey kept us always in his view. We could never wander too far for too long from Home, and from Jeffrey. We were his magnetic north, and he was ours. I am grateful for the time we had with him, the time we made for him, and the time he made for us. We would not change how we arranged our life around him, and how he gave us the love we needed to make it continue.