A blizzard is raging across Connecticut and my sons have cabin fever. Marcus has planted himself in one corner and Julian is crouched in the opposite corner and baby carrots are flying like bullets across the room. It appears that open warfare instead of snack time is on the menu. They are having so much fun, I wouldn't dare intervene. It has been a difficult morning for them and I am relieved to hear shouts of glee instead of screams of anguish. I don't even mind the fact that I have just had a carrot lobbed at my head. I am also indifferent to the fact that the carrots will end up in the trash; I'm not really much of a carrot person anyway.
Other parents would not allow this behavior, I am sure. Then again, I don't exactly have what is considered a normal household. I have three boys with Autism and to us, the only normal thing these days is the setting on our dishwasher. We have learned never to expect any normal mode of play in our house. Age-appropriate toys usually fall by the wayside as my sons find new and interesting ways to play with a set of plastic hangers. The world they inhabit is often riddled with pain and suffering and anything that calms them and creates even a few moments of happiness I become an immediate fan of.
My oldest son, Julian, reminds me of a miniature football player. He is enormous for his age, standing at almost four feet tall and weighing in at eighty pounds. He is only four years old. Even though he has Autism, I still have dreams of him completing a 90-yard dash straight through the Notre Dame endzone. If he is this big at age four, I wonder how big he will be at age eighteen.
My other two little men, Marcus and Aric, are average sized yet stocky. That comes from my side of the family. Julian, the giant, is an offshoot of my husband's family. All three of them have unbelievable strength. I have watched Julian knock over a large dresser like he was batting away an annoying fly. Marcus can pick up his own bed. If I were to arm wrestle either one of them, I would probably lose.
No one on either side of the family can believe that Autism has hit our family not once, not twice, but three times. Sometimes it is absolutely unfathomable. To say that it is unfair would be a gross understatement. Everyone always has several questions about the boys and their daily activities. It is hard to give them answers because the activities change all the time. We try desperately to keep a set routine going but something unforseen always takes precedence. It really depends on everyone's mood.
For example, if Marcus wakes up screaming, we know what the rest of his day will be like. He will have several meltdowns that can last anywhere from five minutes to five hours. He will scream so loudly that his face will turn bright purple and snot bubbles will erupt from his nose. It is an utterly horrid event to witness and we have to wrap him in blankets so that he cannot harm himself. Julian also has meltdowns but they are not as bad as the ones that Marcus has. He is more on the agressive side. When he gets upset, he will charge and woe betide the sorry individual who gets in his way. I have often been a recipient of those little ham-sized fists. In fact, he had become so destructive that his doctor put him on an anti-psychotic medication called Risperdal. His moods have improved but he is still breaking many household items. We have learned not to purchase anything we can't live without. It makes no sense to buy a high quality entertainment center because the first thing Julian will do is walk right up to it and rip the doors off. Hence, a beautiful piece of furniture ruined.
There is also about five times the normal amount of housework. The messes I have had to clean up are almost legendary. Before Julian was potty-trained, he would smear his own feces all over everything in his room, including himself. We learned from his doctors that is common with Autistic children. One of us would haul Julian straight to the tub and the other one would have the job of cleaning toys, walls, carpet, bedding, etc. It was always a very big job. My favorite part was scrubbing the walls and watching the paint come off. I became the fastest painter on earth. We went through this for almost two years. It was a nightmare for everyone. Thankfully Julian simply grew bored of it. Marcus has no interest in playing with his own feces and the relief we feel over that is immense.
It is still too soon to tell what little Aric will be like. He just turned a year old and he is such a sweet little baby. He is very content just like Julian and Marcus were at his age. He likes to hang out in his playpen and he will rock so furiously that I am always waiting for his little body to launch forward or backward. We have also seen other signs of Autism in him. He is already seriously delayed in several areas and he has a very high sensitivity to sound. Before Marcus started preschool, we had a team of therapists come over daily to teach him. Aric absolutely hated the sound of their voices. He simply could not handle it and he would curl his tiny body into a ball and scream. When the talking would cease, Aric would stop screaming. I remember one of the therapists always seemed offended by this.
We know that Aric will also require state services before he enters preschool but we are taking a much needed break from the daily grind. We had any number of people coming over all the time. It felt like an invasion. You have to make sure the house is perfect and answer a ton of questions. Not to mention all the little comments we always had to put up with. "Oh, I see no one wants to get dressed today." "I see Aric is in his playpen again." Those comments were extremely irritating because these people simply had no idea what we go through in the course of one day.
Living with Autism is hard but there are also moments of joy. Not everything is bad. I went to the school last week to be a Mystery Reader for Julian's class and that did my heart alot of good. His teacher and his paraprofessional told me that they had never seen a child have so much love and pride concerning his mother. He must have told me about twenty times how much he loved me. He sat as close to me as he could possibly get while I read three books to his little class.
There are many beautiful moments like this every day. I have been blessed with very loving children. They are always happy to be with me. The boys and I have couch time every morning. We take all of the blankets off everyone's bed and we cuddle up on the couch together. Everyone is quiet and calm while we watch the exact same programs on Noggin TV that we did the day before. We watch these shows over and over. This is soothing to the children because the programs never change, they are always the same. That is something my boys can count on even when the rest of their world comes crashing down.
When things get really out of control, my husband and I take turns with the kids. One of us will flee to our bedroom for a breather and the other will take over. Sometimes I think that this is the only way we get through the day. We also do not bother to think about tomorrow. That is too overwhelming. We all take life one day at a time because that is easier to do. When I think too far ahead into the future, I am tempted to crawl under a large rock and stay there.
Yes, it is terribly painful and I am sure it always will be. I don't believe people when they tell me that I am going through a grieving process and it will eventually end. These are people who do not have even one child with Autism, let alone three. I realize that they are only trying to help but they really have no idea how my husband and I feel. I am hoping that the pain will lessen somewhat but I am not really counting on that. It is very sad to watch my sons struggle so hard to learn the simplest things and to hear them scream in frustration. I would do anything to free them from this prison. It is hell on earth for them every day and we see this with our own eyes.
We have no idea what the future will hold for Julian, Marcus, and Aric but we will move heaven and earth to give them the happiest lives possible. These children were born to us for a reason and we may never know what that is. I have stopped wondering about this, it is a waste of my time. I have many other things to do. For now, that entails picking up carrots, refilling cups of milk, and rewinding the show, Max and Ruby, to the beginning so that we can all watch it again.