I tell Espen our lives are like the ocean. Sometimes a storm comes and we smash to the ground, wildly and without ability to stop. Other times we are so still and calm that there are no waves at all. Most of the time however we are just a wave rolling along consistently meeting the sand and pulling back. He can understand and visualize the ocean. He has seen the waves and knows what it feels like, sounds like, smells like, tastes like. He remembers that if you are in the way a wave knocks you down and fills you will salty spray. Sensory Processing is the ocean for our family! Just like the ocean, we have our high tides and our low and we sometimes crash about wildly! Occasionally someone gets hurt but we get right back up and keep going. I never dreamed my child would have this disorder. Frankly when I was searching for help, I never thought I'd find any and that I'd just struggle with helping my child assimilate to societal norms on my own. I spend a major part of my time reading and getting information, asking professionals and learning to help and understand my son. I learn every day. As does Espen.
Part of understanding my son, the disorder and how it works in our lives is letting go of some of my "dreams" for him. Just like every parent, I want him to participate in school and sports and activities. I long for him to bring home an art project or a card or picture he made for mommy. I hope for a hug given on his own. I want him to have friends his age to play with, pals he can share secrets with. Successful in school and eventually work, I want him to travel the world, meeting fascinating people and seeing amazing sights. Perhaps my dreams for him are grandiose.
Yet Espen does participate in school... and twice a week we both have so much anxiety about it. He can't sit and focus because there are so many other things happening inside and around him. And I have heard nothing after 8 months other than how bad my child is. We have only 10 more days and then summer to recoup and see what happens in the fall. He is not bad. I have not one time this year had a single project get sent home. I can count on one hand the times he got a "good day" report. I have heard that he "can't do" what everyone else can. Yet he can write and recognize an E for Espen. He can cut and draw shapes. He can sing silly songs. He has a sense of humor like a comedian! He uses the bathroom alone. He is learning things and I am proud of what he is doing! Especially since I know his fine motor skills are delayed and that it takes huge effort to focus on a simple task. He is excited to see me when he is done but never tells me one single thing that he did in the 3 hours he was at school.
He participates in sports... he can ice skate and swim. The things he is unafraid of trying scare me. Yet he does them without hesitation. It is amazing to watch him try to figure out how to cross one skate over another. Or swim and do side breaths. He can and does those things. Because he doesn't have the pain to know falling hurts. Because crashing is fun. Because being under water for long stretches at a time make him feel great and it is quiet underwater. Because fear is not understood. I can see growth in my son. I encourage and afford skating and swimming because it is good for his body and mind. But I wanted more....
After much discussion, this summer we opted out of organized sport participation. He is not a candidate for soccer or t-ball or football. Whistles drive him nuts, large crowds freak him out... these sports are not for him. As much as we want to go see our son play ball we understand that those things right now will set him up for a failure. So we stick to summer activities we know we will succeed at. We will swim. We will skate. We will see about gymnastics especially jumping! He is running and wants to run a race with mommy. All of these he will feel successful at and we can enjoy watching.
I do art projects with my son. Or more aptly, I TRY art with my son. He feels good when he can FEEL it, smell it, taste it. Our art turns messy fast. From the time he was tiny I allowed him to just be dirty. So if I get out finger paint I had better be prepared for a naked child who is rolling in paint. It is a rare day to sit and color quietly or paint a picture for mommy (like it NEVER happens). And yet I encourage large messy things. I let him paint the driveway or garage floor. We put a chalk board wall in his room and my studio. We have window markers. We have face and body paint. We use permanent marker to make tattoos. I can't save any of those for my wall but I can get some great pictures of my child having a fantastic time and I can put those on the wall! But understand my frustration in just wanting once in a great while to have something cute and great to hang on my fridge or wall that my son made!
I don't get a lot of hugs or snuggle time with my child. Hugging is not something that feels great for him. I get crashed into. I get tugged on. I am the monkey bars. I understand my son. These are the ways he loves me. I make him safe so I am the one he crashes into.
Even with some social anxiety I encourage Espen to meet people. To chat aimlessly with strangers is not uncommon. He invites random folks to our house. But I listen. If someone smells bad or gets to close I know I will need to remove or intervene quickly. His curiosity will lead him on new adventures... of that I am sure.
This child is my gift. He is my joy. I will not give up my dreams for my son. But I will make adjustments to what is most important to ME and learn what is best for HIM and encourage, afford, support him in that! My child is one gifted little boy. He may not fit into my ideal dream but he fits into my real life! He may not fit into societal norms .... so I don't make him. I explore every opportunity and create a path all his own.
This crashing ocean is not what I hoped for in a family but it is the one I've got. I can jump the waves holding his hand or I can be swept under... I choose to hold on and keep jumping.
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