DISCLAIMER: What I am about to write might not be popular, cheerful or edifying in any way. I feel burdened to share though, because it’s difficult to understand if you don’t live it every day. Our circumstance is not that of every family with Autism, but you should know that it’s pretty typical. I began this blog as a cathartic experience, but somewhere along the lines it became about advocacy, and that’s why I feel it’s my duty to share a true picture of our unique life with the world…and it isn’t always unicorns and rainbows.
DISCLAIMER II: Any behaviors I might describe negatively in no way reflect upon my love or admiration for my child. He’s amazing, and if anything, my anger stems from the injustice of the struggles this disorder inflicts on my beautiful, intelligent and mild tempered little boy.
A typical day begins between 3 and 5 a.m. P finds his way into our bed generally around the end of the Daily Show, and depending on how well we manage logistics, often my husband is relegated to the couch or the twin bed in P’s room. The average wake up time in about 4, P will jump on me until I wake up and tell me to turn on the television. If I don’t comply he’ll scream repeatedly “watch a show” until I acquiesce. Sometimes I can distract him briefly with the iPod Touch – but lately he’s been really into Nick Jr. The top of the stairs in gated so he cannot leave the bedroom area. On occasion I fall back asleep for a brief while only to wake up to shreds of paper, toys, ink on the wall, pee on the carpet, and the other morning a broken television (actually, I was awake for that, just not fast enough).
If we’ve carelessly left a closet door open, especially the one in his room – the bookshelf will be emptied and used for “climbing” to “reach” god knows what.
Needless to say, I try not to fall back to sleep, because the fallout is not worth those extra few minutes of broken rest. When I can I take him downstairs after he wakes, so as not to wake up Daddy who has to work at a real job in the morning.
Downstairs we watch TV while he looks at books, paints, colors, etc. I try to stay close, because if he gets frustrated things will be destroyed. He will bite and shred a book, or throw paint all over the carpet. Again, it’s not that he’s trying to be disobedient. He just truly cannot control his impulses.
He likes to go to the refrigerator. It is child locked (as is everything in our home) but he is smart and can open it. He will take food out of the fridge. Today he decided he wanted to make fruit salad and took out half a watermelon, pineapple, grapes and strawberries, and climbed up the sink to get bananas off the counter. He then searched for a “knife” (those are hidden by the way) to cut up the food. In the meantime he found an avocado in the fridge and bit it, discovered that he didn’t like the texture of the skin, and spit it all over the floor.
I helped him make a “fruit salad” which he ate in front of the TV. Except for the strawberries. He didn’t like them this time and ground them into the carpet in the living room.
Then it was time to get ready for school.
I chase him around and dress him. He can physically dress himself, but usually I have to do it for him because he’s not able to focus. As we leave for school the cat runs out the front door. I am torn. I need to chase her down, but it’s a risk to leave P. I made the choice to grab the cat. It was the wrong one. P bolts up the stairs and into the parking lot which is busy with neighbors leaving for work. I sprint to get him and carry him back to the car. I scolded him when I reached him. I told him I was scared when he ran away. He laughed at the affect in my voice. It didn’t register. I pick him up and put him into the car-seat and buckle it. I give him some milk and turn on the car. He screams for his “Old McDonald” songs. I find the CD and turn it on. Then I go to gather my belongings scattered amongst the yard and find the cat to return her to the apartment.
He is quiet on the way to school. I think he’s prepping himself for an overwhelming day. He is in extended school year (summer school) to help maintain continuity in his routine. Were he to be away from school for too log he might regress and he would spend an entire semester readjusting to the classroom. He had a wonderful day there. He practically always has a wonderful day at school. I’m glad that the structure of the classroom and the expectation of his teachers has a positive impact on him, but I also find that he works so very hard to hold it together all day that by the time I pick him up he is ready to melt.
Today wasn’t too bad. As I was saying farewell to his teachers he bolted out the door of the classroom and down the hall. He often does this. I catch him at the end of the hall and carry him the eternal distance to the car. My back begins to cramp once we get near the car so I put him down to walk. He lays down on the pavement. I do a quick stretch and pick him back up.
Most days we have at least one therapy session in the afternoon. Yesterday we had Cooking Class and Swimming. Fortunately my in-laws are very nearby and are amazing with him. They’ve helped care for him since he was an infant and can work miracles when I am at a loss.
Today was a light day. We only had speech therapy, at home, in the afternoon. Sometimes light days can be more difficult though. There is more unstructured down time. We came home and P wanted a peanut butter and jelly hot dog. I know this means he wants a hot dog bun with said condiments. I learned this yesterday. Through much trial and error. While I prepare the “hot dog” he dumps the bag of popcorn I was snacking on onto the floor. I give him the sandwich and begin sweeping it up. He screams that he didn’t want peanut butter and wipes the sandwich on the wall before getting it on his hands and throwing the sandwich ultimately in the toilet. I know better but I ask him “why”? He is too upset to even comprehend. I wash his hands. Flush the sandwich and get him some goldfish. Sometimes we just need less talking.
I need to phone the apartment office as the air conditioning isn’t working so I go to the kitchen. While leaving a voicemail he has an accident on the carpet and puts the kitten in the toilet. I get a towel and the Folex carpet cleaning solution (best stuff ever, please send me a lifetime supply) and get to work. Then I dry off the cat – no wonder she runs away all of the time – and dress him again.
He isn’t in the mood for speech therapy today. He’s tired having been up and on the go for over 12 hours by the time his therapy starts. He cries a lot. But we consider it success because he continues to try to communicate even through the tears. After speech I get the paints out for him and we paint while watching Olivia on Nick Jr. He’s having fun until two colors mix together and all of a sudden he throws the plate I was using as a palate. Folex and I meet again. I wash him up and despite protests he allows me to put away the paints. He requests pizza for dinner, the circle kind. I am drained. I put away the fresh dough I was going to use for pizza night and pull out the frozen Trader Joe’s kind. I bake them in the oven, which has safety locks on it, but have to stay near the over because he wants to open the over and “check them”.
In the living room I hear a crash. He has pulled the curio down trying to get to a toy he’d dropped in back. My heart stops. I must get a wall anchor for that thing. He’s stronger than I thought. But he’s okay. He is completely unphased. He grabs his toy from the now open space and continues towards the television. My heart begins beating again – really fast now. I stand the curio back up, no time to take inventory of the treasures of another life that are shattered. He’s off to the kitchen.
I make it to the oven before he does. I occupy him with ice cubes and get the pizza out.
Daddy comes home.
All is relatively calm (of course). I wonder if I ran out the back door would he blame me? I recount the highlights, but he doesn’t need to know the details.
We talk about how we are going to pay the bills this month (today) and if either of us have had any luck in the job search. He says he’s happy that the air is fixed. I fix P a plate with the pizza and Daddy goes upstairs to change.
P takes one look at the pizza and throws it in the garbage. He doesn’t like circle pizza.
I give him a banana and some goldfish and sit down to check my email.
A minute or two late I realize it’s quiet.
He’s naked. There is water on the carpet. He has four plastic cups with strawberries and water in them. He was making “strawberry lemonade”, I’m informed. I don’t know how I missed that fridge trip.
I usher him upstairs to the bath. He brings the ice cube tray. Bath-time is uneventful. I need to wash his hair but I’m not up for the fight tonight.
I dry him off and get him to his room. While I am getting out his pajamas he dumps the toy-box and climbs inside. I wrangle him out and he runs downstairs wet and naked. I call for Daddy to help me dress him. We get him dressed and give him a “special milk” (with melatonin in it) and lay him down on the couch with Raffe and a blanket. Tonight he’s pretty tired. He doesn’t fight sleep much at all. He watches Nick Jr and is out on the couch around 8. In a few minutes we’ll take him upstairs and place him in his bed…where he’ll be until about 11: 30 p.m. when the whole day will start again.
This might be the longest and most mundane blog post I’ve ever written. But I wanted to kind of detail a day in the life. I think I did this a few years ago – though our struggles were different then.
Still there were many laughs today. There were a lot of hugs and kisses. I think that because it’s so insanely hard that the successes, the moments that show the true beauty of our reality, are so much sweeter.
Whenever I find myself thinking “this is so incredibly difficult”. I can’t do this. I can’t function. I stop and remind myself of how it must feel to live in a world not at all friendly towards you. A world not designed with you in mind.
And I think about how hard he fights to make our silly little world work for him. How he works so hard to conform to our social standards.
I think I might be a little out of sorts and unglued too if I spent the majority of my life making my mind and my body go in completely different directions then they were programmed for.
I’ve realized though that virtually everything we deal with is superficial compared to what our children struggle with every moment of the day. I can slip away for a run and clear my head. I can have a drink with my girlfriends and regroup. But he can’t – at least not yet – and though I believe he will some day, until that day comes all I can do is provide gentle guidance and unconditional support.
And keep him from drowning the cat in the toilet too.