I spend a lot of time with Jake inside our little castle. Most of our interaction in the outside wold consists of trips to the store, restaurants and movies. Even in those situations, Jake's interaction with the world is pretty limited and focused. He might say hi to the checkout person, or talk to the waiter, or yell hello at the folks passing by, but for the most part, most of his focus is on me and mine on him.
I like my view of Jake in the world, and usually I don't think much of it. Then some little thing will happen and I will realize how very, very different Jake's life is from that of a mainstream 6 year old, and I get a little anxious, and a little frightened, and I start worrying a whole lot about the future, and how I can make sure that Jake is always going to be OK.
Our grocery store has a small daycare center. It's got a TV and some chairs and some little tables, and it's staffed by an assortment of folks. Jake went in to play one time about a year ago - he was the only child there and sat in the corner and played with blocks. I didn't want to put him in there - I like to keep him close to me, keep him protected and safe - but he wanted to try it, and I know how important it is for me to let him spread his wings.
He did fine that day last year, but never really asked to go in there again, until day before yesterday. He was having an "off" day. He woke up sensory seeking and introverted and a little crabby. He would sink into himself and bursting to tears for no reason, except for one time when he said he missed his daddy. I needed to run to the market and I know how Jake loves to get out of the house (sometimes I think it's probably more of a prison to him, never getting to just take off into the yard or ride a big wheel down the street), so I thought a trip to the store would cheer him up.
When we got to the parking lot I realized that the trip could go either way; it could either take his mind off of whatever was bothering him and cheer him up, or the large crowds, noise, bright lights and stimulation could send him right over the edge into a full blown autistic break down. Once we worked our way to the side walk Jake took off, and I knew for sure that he was feeling the need for some exercise. When I caught up to him I took his hand and walked through the door, and realized the pre-Christmas crowds were even worse then I'd expected. I'd need to keep him right next to me to make sure that I wouldn't lose him in the crowd.
We started going up and down the aisles, just walking and looking at all of the Christmas displays, when Jake asked to go see the movies. To get there, we had to walk by the day care room, and to my surprise, Jake stopped and asked to go inside. I hesitated for a moment. I knew that he really did want to go, but I also knew that he was having an "autistic" day - a day where his behavior would be unpredictable, disorganized, and at times agitated. When I looked in the room, I saw a little girl playing with crayons, and little boy watching TV. The lady who was in charge was an elderly woman, probably close to 70. "Please, mama. Pleeeaaazzzeeee...," Jake asked, over and over. And I wanted to say yes, but I have seen Jake on too many of these days. I knew the girl's crayons would end up on the floor, the little boy would end up knocked off his chair, and the "grandma" would be frantically calling me over the intercom to come and get him.
I looked at Jake and once again my heart was breaking. "Not today, Little Man," I said.
"But I want to play," he sad softly, looking at the floor.
I got down on my knees and lifted his chin up so he would be forced to look me in the eye. "I know you do Jake, but you know what? Momma needs help picking out your special crackers. Can you help me with that right now and play another time?" I asked.
"Ok," he replied as he climbed up on the cart between me and the handle, pressed between the front of the cart and my body. "I will help mama," he said softly.
No, Jake is not like other 6 year olds. He's so much more - more than I could have ever asked for, and every night I pray to the Lord, asking that he help me do what's best for Jake. Some days I'm confident I'm getting it right, and other days - well other days, I just don't know.
Our grocery store has a small daycare center. It's got a TV and some chairs and some little tables, and it's staffed by an assortment of folks. Jake went in to play one time about a year ago - he was the only child there and sat in the corner and played with blocks. I didn't want to put him in there - I like to keep him close to me, keep him protected and safe - but he wanted to try it, and I know how important it is for me to let him spread his wings.
He did fine that day last year, but never really asked to go in there again, until day before yesterday. He was having an "off" day. He woke up sensory seeking and introverted and a little crabby. He would sink into himself and bursting to tears for no reason, except for one time when he said he missed his daddy. I needed to run to the market and I know how Jake loves to get out of the house (sometimes I think it's probably more of a prison to him, never getting to just take off into the yard or ride a big wheel down the street), so I thought a trip to the store would cheer him up.
When we got to the parking lot I realized that the trip could go either way; it could either take his mind off of whatever was bothering him and cheer him up, or the large crowds, noise, bright lights and stimulation could send him right over the edge into a full blown autistic break down. Once we worked our way to the side walk Jake took off, and I knew for sure that he was feeling the need for some exercise. When I caught up to him I took his hand and walked through the door, and realized the pre-Christmas crowds were even worse then I'd expected. I'd need to keep him right next to me to make sure that I wouldn't lose him in the crowd.
We started going up and down the aisles, just walking and looking at all of the Christmas displays, when Jake asked to go see the movies. To get there, we had to walk by the day care room, and to my surprise, Jake stopped and asked to go inside. I hesitated for a moment. I knew that he really did want to go, but I also knew that he was having an "autistic" day - a day where his behavior would be unpredictable, disorganized, and at times agitated. When I looked in the room, I saw a little girl playing with crayons, and little boy watching TV. The lady who was in charge was an elderly woman, probably close to 70. "Please, mama. Pleeeaaazzzeeee...," Jake asked, over and over. And I wanted to say yes, but I have seen Jake on too many of these days. I knew the girl's crayons would end up on the floor, the little boy would end up knocked off his chair, and the "grandma" would be frantically calling me over the intercom to come and get him.
I looked at Jake and once again my heart was breaking. "Not today, Little Man," I said.
"But I want to play," he sad softly, looking at the floor.
I got down on my knees and lifted his chin up so he would be forced to look me in the eye. "I know you do Jake, but you know what? Momma needs help picking out your special crackers. Can you help me with that right now and play another time?" I asked.
"Ok," he replied as he climbed up on the cart between me and the handle, pressed between the front of the cart and my body. "I will help mama," he said softly.
No, Jake is not like other 6 year olds. He's so much more - more than I could have ever asked for, and every night I pray to the Lord, asking that he help me do what's best for Jake. Some days I'm confident I'm getting it right, and other days - well other days, I just don't know.
