Autism is confusing to children and parents. The first thing doctors tell you is the worst case scenario and so you work hard to improve things for your child and adjust what life looks like for your family. You keep working. You put your heart and soul into changing the future into a better scenario and some days you believe it will be the best scenario. The child knows none of this, but puts one foot in front of the other plodding along with their head down seeing the steps----matching up the footprints to the feet and backtracking along the path to pick some flowers too.
The more you work at it everyone weighs in with opinions and stories, so much so it is hard to keep focused on the work or what the goal of said work is and the child is still your child and they want to be your child no matter what tomorrow is or is not. Someone reminds you to be in the moment together.
So you sit with him or her and sometimes that feels like work. Until that melts away and you are blown away by this person staring back at you or not, but they are there wanting the same love that you want to come back at you. It may only be a fleeting second or a slight flitter of a love wave coming from the child, but it hits the parent with a force and both of you know it.
As a parent, you live there forever, now clinging to the past not wanting the wave to roll past, but to ride it all the way in----frozen at the crest where you can see for miles, days----a clear future----a new plan, place----a promised land. The child is there and where are you parent?
The child is underneath the water, perhaps exploring other fish and creatures that are much more interesting than the wave. Or they might be looking at you wondering how you got up there on top of the wave and how can they get there too? Or they might be wondering why haven't you, the parent, haven’t ridden in into shore already? Or if you take in that instant, you might see for that millisecond, you are there riding together. You want to be there longer, but you'll cherish the millisecond and ride on in and wait on shore for your child to come in too.
What if they don't come to shore? You worry. You pace. You decide to gear up and go find them. So you dive into the work again and again and again. You see the amazing fish under the water and whole other world that your child is exploring and you are fascinated. You study it with them. You learn so much. You are under so long that you both seem to be part of Atlantis or growing your own gills---it feels like the world has changed to this new exploration. You don't realize you aren't so much a part of it until you are both interrupted by a new diver or a submarine passing you by and you remember where you are and now the land up above this undersea world seems farther away than ever. How do we get back? Should we go back?
If surfing above together, it is tiring for both of you as you ride in and go right back out again and again. You are both fit and able to do this for a very long time. But you are seldom on the same board or wave again. It must seem more like a competition than a shared interest anymore.
My analogies go back to the sea often. I don't know why. I have never surfed, but admire those that do. I don't scuba dive either, but have wanted to learn. I think it is the rolling nature of autism and the challenges, joys, and discoveries----as steady as the tide.
Someone said today to never give up on our autistic kiddos and their future of what they might become. As a parent, you think to yourself, "or course not". But then I saw the sweet release of a friend as she said she had to change the dream of what her daughter's future looked like today. I thought this was such a wise statement of reality.
Her sweet daughter is sixteen and has come a long way, but and that but is always there in that sentence when it comes to her daughter, and that isn't a bad thing....autism is just going to be there and she accepts that. Her mother is doing what is best for the moment. Her daughter is on the “severe” end of things for lack of a better term. She is intelligent and delightful in many ways, but silent and locked away in her own private undersea exploration.
Her mother is being in this moment with her daughter. They might be on the beach already or they might be going back out to try to catch another wave. They've spent a lot of time exploring underwater together already. I think now, they are both coming up for air.I like to think of them both in their own lifeboat rowing hard for an unknown destination, but there are plenty of supplies to last quite a while. No one is worried that they both will get where they need to be. Perhaps they both feel lucky to be floating along in a boat with plenty of supplies. There is a map they both clutch that might turn out to lead to hidden treasure. I'm not sure either of them can read it yet, as it still looks like just a bunch of symbols, not making a whole lot of sense, but I can see them bobbing up and down puzzling over this new destination. This is what they both have discovered in the swimming, diving, exploring, and surfing phases of the last sixteen years.
They knew they were "off the cruise" long ago. Some said to the mother that they were shipwrecked, but not in the mother’s estimation, the cruise part or ship was never really there. But today, somehow these tiny vessels did appear with their names blazoned on the side of these two little boats. They climbed in to captain their own destinations.
The mother is still there bobbing beside her daughter, but the daughter’s boat isn’t tied to the mother. The girl is a young woman steering her in a new direction away from the mother. They are settling in to travel in the miles and miles of water they had just been treading in, but it is now a partner with them in getting somewhere even if it is still unknown. This sea of autism holds them up in their dinghies of destiny. As they keep rowing...and rowing....and rowing into an unknown sun and they hope they can spy land once more.