Hope is a Thing with Splinters
Recently I’ve been trying valiantly to ignore a niggling feeling. I’ve been trying to ignore the fact that my child appears to be making progress. I’ve been trying to bat down the lifting of my hopes.
There is a physical sound to the rising of my hope and the raising of my awareness of his progress. It tingles in the fine hairs on my neck and arms. The hope comes like the sound of an air brake on a truck and the awareness crackles and sizzles like an electric current. My gaze will narrow and my smile will freeze, and like the brakes, I want to halt them outright. I stand in the face of his progress like a lone figure under a thick heavy threatening layer of steely sky, in the ominous silence that is suddenly filled in just before the shrill of the sirens that warn you to take cover. It’s like standing in the indrawn breath of the moment before it touches down. It’s like standing directly in the path of a tornado.
The tornado could roll through and take off the roof, or maybe pass you by and make way for new things to begin. But, you can never be sure until you’ve risked to stand full of hope in the path it wends at its own scattered whim. In short, I am a hopeful person. But, not here. In this aspect of my heart, I would do anything to guard myself against too quick a rising of my hope. If you are asking why, then you are not raising a child with Developmental Delay, or more specifically Autism. Hope can be a gut wrencher and an emotional tornado around here. I hate hope. Hope is not gentle, sometimes. It is not soft. It’s not always a thing with feathers. Hope is a thing with splinters, sometimes.
I could explain again about the first three years of Neeko’s life and how he would begin to shake loose of whatever shell was there and kick himself toward the surface of the smooth glassy deep of the barrier, like water, that separated us. He’d try and try and make it almost there. His eyes would connect, his lips would twist, and he’d suck in a breath and sputter, his body literally shaking with effort to break through. Words would almost form! Ideas and connections and wants and needs would squeeze through tiny little beautiful cracks. And then for whatever reason a morning would come and Nicholas would be wiped away again. He’d be moving in his body but one look in his eyes and we’d know we’d lost Nicholas all over again.
In my child’s case by the age of 4 we found out about silent seizures that were periodically zipping through his brain like an electrical storm all through the days and overnights. Often his poor little body just had to protect itself against this onslaught and his intent for communication, connection, and focus by necessity– in the face of these things would be forced off. Neeko’s brain was like a circuit board and when it was tripped, all but the essential things would flicker out for a period while he would recover. These periods could last anywhere from a few days to a month, sometimes more. Days spent with a wan pale little child wandering on the edges of us as if on auto pilot. The circuit that wired him for connection, disconnected.
It is still true that any cold, virus, illness, toothache, a pulled muscle, anything—any added burden to his body at all will trip the same circuits. He will first go pale and quiet and then express a terrible opposite effect. When he is sick he will literally be unable to stop motion, to listen, to pause, to be a part of most anything. Illness will see him literally bouncing off the walls. There have been times when my husband and I have sat and just watched him run like a hurricane. We will think to ourselves that his wires are discharging, firing wildly, he goes off like pop-corn. There is nothing for him in these times. There are no verbal directives at all, if you need him to respond or do anything you must physically go to him and move him as you need him to be. There is no rest for him and certainly no rest for us. There is only protecting him as he recovers himself. There’s just loving him, always just loving him, through the exhaustion through the darkness of the rabbit hole. And there is being ready and waiting with a smile for when his eyes connect again.
Sometimes the circuits are tripped through seizures, and sometimes illness, but sometimes it’s just an Autism wind. No rhyme, no reason, no pattern, no cycle and no mercy in the swiftness with which it will land. Sometimes we can pinpoint what has happened but just as often we cannot. I now completely understand what the first neurologist meant in that very first appointment way, way, back. I asked how it might go for a child like Neeko and what were his future prospects? He told me the odds were not great for full independence even in the “higher functioning” of cases, which he did not consider my son to be, but even in that he said Autism is a life changer. Because he would have periods and cycles where he would simply not function very well. I didn’t understand that at the time. I believed that like a typically developing child that if we could just get a skill set mastered it would stay, like it had with our daughter. I did not then know anything at all about the circuit breaker or the tornados or how fragile my son’s peace would be. I have often thought back to these very first words and have come to understand now exactly what he meant. I want to go back and hug this man and also punch him in the face. It has been one of the things that was dead on prophesy for Nicholas. My son goes offline and progress has been pulled out from under his feet again and again. Words are lost. Skills are forgotten. We start again and again from two steps behind the block when Nicholas emerges from the storm.
So all of that is to say in six years I’ve learned to watch anything of progress from a distance. I view progress the way a slower, wiser, lion might look at a very swift antelope. I look at it with an intensity that blots out everything. The instinct, the eons of hunger, the inability to prevent that watching silence is still there. A mother’s heart is bred with the instinct of a lion. Nothing will ever change that. But, I watch carefully from that cushioning of distance because I understand that to approach it is often the quickest way to lose sight of it again. Hope bounds fleet of foot, like an antelope. Oh, how I enjoy watching words pop out of Nicholas! I love watching him connect and learn new skills! But, it is aching and frightening too. Because I didn’t know. I did not know about losing them again and again. I do now.
Yes, I clap! I encourage! I tell him how happy I am! And great balls, oh–I am! But, it takes several repetitions for me to even very quietly tell my husband about them. Often I will tell him about some new skill in the very same breath as “Please pass the salt, oh by the way—-” And each of us tags onto the end of each of these thoughts carefully, “But, you know how that goes…” “Still it was so cool to see!” We will meet eyes briefly and often there’s a frozen moment, there’s the held breath, there’s the tender wound of the fragile pause that says everything into the silence at once, and then there’s the shared careful smile. Then we move quickly on.
There are very few people I will tell anymore about progresses because the wind of hope hurts so much. Usually I will speak to another Autism mom very, very, carefully. I am drawn to the ones who know exactly what I mean. The ones who hear the tightness along with the love of my tone. The ones who know I am the only one out there in the field, full face upturned staring down with love and hope, naked in the crackling winds. I am directly there in the tornado path. Hope is brave here.
It is with trepidation that I report a few things that have been happening that point toward progress. Something in my kid has changed somewhere. There has been a phenomenal layer of connection, intent, and meaning behind his eye contact. There has been a swift and sudden humor that pops up from nowhere, appropriate jokes about what would happen if Marty-Bubble, his dog, were to ride Splash Mountain, or how fun it would be if we could stuff him into Nicholas’ backpack and bring him to school. This vision so amuses Neeko he’ll get me to sing The Wheels on the Bus and he’ll make Marty-Bubble’s paws do the hand motions.
There’s been a vast improvement in his ability to use his communication device appropriately and intent fully. There’s also using that same device for a much more normal thing. He can also now play video games of a certain type. I am too exhausted really, trying to ward off hope and dodge the cruel hardness of the splinters to explain how monumentally big that alone is–its planning ahead, secondary plans, reacting, sustained attention, and just navigating the system of “Start” “End” all of that….There have been very meaningful pantomimes that have led us to understand he is thinking, asking, planning, imagining–WANTING–things for himself.
There has been engaging people and making them understand that he is remembering and specifically relating to them based on their experiences together. There’s asking grandpa over the phone, which means he was very clear about who grandpa even is, sight unseen on the phone. Concepts of recognition we could never be quite sure to what degree he was making. There’s engaging that grandpa very specifically asking to go fishing, to fix the boat, and to go and visit him. All things they’d done together.
There’s his teacher being thrilled and sending hopeful messages home. There’s correcting his therapist who casually calls his car a truck and he has piped back as if he always could “No, it’s car”. He no longer seems content to allow people to mistake or misrepresent him or what he means
There’s complex stringing of words “I want more” instead of just plain curled and clipped off mo’. There’s following through on promises hours and days after they are made. If you tell him something simple like we will have an ice cream after school because you don’t want him to have it for breakfast, you’d better mean it, because there he is flapping from the moment you pick him up anticipating that treat promised all those hours ago. If you say on Tuesday “Friday we camp and cook hot dogs over a fire and sleep in a tent” When Thursday rolls around HE is telling you tomorrow we cook a hot dog and sleep in a tent. He does it through pantomime and word approximation but there is no doubt of what he is talking about. There is suddenly pushing play and changing out movies from his DVD player. There’s asking for a movie he’s not seen in months and through pantomime and approximations making it so clear that even I could understand. There’s an intensity and an awareness to his focus that is amazing! Worse yet, there’s all this air braking sudden shrill stillness–there’s a rising up of that fucking old splintery hope!
I know Neeko will never be cured. I know he’ll always be special and have a journey that will always be layered with his own distinctly placed footsteps. He’ll always, always, have his Autistic brain. I love his brain! I love his soul! I understand that he is more amazing than the other little boys, he’s stronger, he’s deeper, he’s more layered, he is who he is and having Autism–only adds another layer. I no longer seek at all to separate the distinctions of Nicholas and Autism, it’s just part of his destiny. Everything I’ve ever said tells that story, it’s the story of MY recovery and of my love that never ever got touched through any diagnosis. My recovery was for the loss of “the dream of perfectly ordinary”. I never, ever, mourned for him. I never wanted him to be anyone but him. But, there has been no heartbreak like watching him kick so close to the surface of connecting and engaging and then watching him disappear again. He WANTS to talk to me! He WANTS to be a part of the every day! He WANTS to engage! And when the tornado sweeps through and he is thrust back to the edges. There is sorrow and exhaustion when the wind whips shrill and he suddenly can’t sit still and can’t sleep and can’t focus and can’t eat, it is far harder on him than on anyone. I watch each retreat with sadness, because I know it matters to him. It matters so much to him to be a part of all that we do.
Yes, I’ve always known his story would be unique! There’s never been a doubt for me about how intelligent he is! I’ve believed in him with the heart of a lion! I said a lion! There is no person who isn’t expendable in my life, if they aren’t good for my son, they are gone. I will fire people who work with him if they can’t find the line between accepting him as he is and helping him be his best self. I have hired advocates, visited lawyers, learned law myself, yanked him out of offices—I’ve dismissed friends. I’ve found friends! I’ve scoured the Internet. I’ve gotten in my car and driven three states to meet them. I’ve accepted who he is and I’ve cut away anyone or anything who forgets for even a moment that I am watching. I’ve protected him at every stop. I’ve protected his childhood and his right to live his life as fully as he can and his inalienable right to reach for his dreams. Most importantly I am fighting for his right to do all those things, every single one of them, and to do it all–with Autism.
Never let it be said I have not fought, clawed—dragged myself through obstacles again and again based upon my belief. I did that even when there was no evidence! I did it when he was offline and when he was on. I’ve stayed right by his side. I’ve never once given up on the end story I know will come. But, it is also true that my hope has been carefully controlled. It’s become a thing I fear even more than spoiled milk, Bogey men, and ax murderers.
The sirens are blowing right now. The wind has stilled. The threat of big progress is in the air. The bravest thing that I can do is to come out and embrace the fear, embrace the old dance, accept this hope and enjoy the moments for however long it lasts for him. To connect and engage and enjoy this amazing place he’s found himself in. But, people don’t know. They don’t know how scary it is.
Hope is a tornado sometimes. It has knocked me down time and time again and still I return to stand here and wait for him to emerge. Today I’ve decided to talk about it, to open up this very private part, the thing of hope. Not for a cure but just for a sustained meeting, face to face upon the field, in the open out there, to know and relate and engage, and to take part in the interests and thoughts of my own son. To risk it even over the screeching of the brakes puffing and chugging and continue out even against the currents rushing my skin. To find peace and strength even as I am watching that tornado touchdown. To dance with hope and just to be willing to meet him on his terms—and to never ever quit–to take the bits of him that I can get, I will be there every time.
Even if I have to survive the heartache of watching him go once again. I will never stop meeting him there. However to not say this, is to paint an incomplete picture. Hope. It is a double edged sword. I’ll be left to fall on it again and again if I don’t want to miss anything. To open myself to hope is the very bravest thing I’ve ever done. To hope, is to risk the splinters for the beauty of the meeting place.