A few weeks ago, I was taking Dear Son out to the school bus. As we walked out to the school bus, from our garage, I noticed a new gentleman getting off the bus. Typically, we have a bus driver who drives the bus, a bus aide who is responsible for getting the kids on and off the bus and a nurse. As the man got off the bus, it was clear that it wasn’t our normal bus aide. He was one of the men in the office at the bus company, who had to fill in for the aide on our bus. When someone is sick on our route, the office staff fills in. The special needs busses are different, in that they require a little different staff to attend to these kids needs. Not just anyone is assigned to these busses. He got off the bus and was looked quite grumpy; he clearly was not too happy that he had to fill in. He grudgingly opened the door to the little school bus. Dear Son watched the man from his wheelchair. It was a cold day and he had on his down coat, a hat, a scarf over his mouth and a blanket over his wheelchair. I try to keep him warm on these very cold days and the short school bus often has the rear door opening and closing to get the students on or off, so it can get quite cold on the bus. The man didn’t say anything as we came closer to the bus. I said hello, as I normally do, and now that Dear Son is such a big man, it takes two of us to help pull the wheelchair on the ramp. I usually pull the chair from the one side and the bus aide pulls it from the other side. The nurse stands there watching to make sure everything goes well. I asked the man to help me pull him back. He wasn’t too happy about that. Once Dear Son was loaded onto the bus, I left to go inside.
Once inside, I thought about the man’s attitude. Yes, it probably wasn’t what he had planned to do that day but what a difference it would have made it he had chosen to be happy. These children in contrast, don’t have an easy life. Dear Son can’t feed himself, can’t dress himself, can’t brush his teeth and can’t stand up. He spends most of his time in a wheelchair. He can’t pull his hat off on the bus when it’s too hot or pull his gloves (mittens) on when’s he cold. Yet the man’s attitude on the bus was all about himself and how hard or inconvenient it was that day, to have to ride the school bus. I was annoyed with his behavior. After all, how hard would it be to have greeted Dear Son with a smile and been a little more enthusiastic about getting him on the bus? It would have taken only a minute or two. Upon deeper reflection, I thought it was probably what I looked like to Dear Son at times, many years ago. Caring for a special needs child takes a lot of work. Sometimes I get very, very tired but more often than not, some things are just really hard. Everything you do for them takes the most work or the most effort and day after day, it can be exhausting. If you talk to almost any special needs parent, the one thing they wish for the most is for things to be easy.
For as long as I can remember, Dear Son has woke up with a smile. He’s been a happy baby, a happy kid and now a happy teenager. One day, many years ago, I thought to myself, I wonder if Dear Son notices when I am having a hard time or when I am tired. I wonder what he thinks. As my mind wandered on, I wondered if maybe he thought he was a burden or if he thought his Momma didn’t want to take care of him, even though I was just tired or something was a lot of work. I thought if his face were a mirror, what would I see? What is the face that Dear Son sees when I take care of him, when I do things for him? Would this be what I wanted him to see? Would this reflect how I really felt or was my face a reflection of the difficulty of the task? I decided then, that I needed to change my attitude. I needed my face to be a reflection of what was in my soul and not a reflection of my lack of sleep, the difficulty of the task or the fact that I was tired. I loved and have always loved taking care of Dear Son and don’t suspect that will ever change. I would never want him to think that taking care of him was a burden because it is not. It is the most joyful thing that I do and there is nothing I would ever want to do more than that.
From that day on, I began to look at things differently. I pretended that his face was a mirror and made sure that the face that I was projecting was what was in my soul. That I was happy to see him, that I loved him dearly and that it was an honor and a pleasure to take care of him every day. I began to be more upbeat and made sure I was smiling when I greeted him every day. When I was doing tasks that were unpleasant, I made sure that I spoke about it in a positive way, not that it was a burden to do so. I must admit, that often at home, I can be almost syrupy in the manner in which I speak to him, so in public, I do tone it down a bit. When I have an unpleasant task, I make sure that I don’t let him see this side; maybe upon leaving the room, I might mouth a word silently after exiting the room. That way, he doesn’t see me. It can be easy, when the children don’t speak, to think that they don’t hear things as well, especially when they can’t comment on something. When he arrives home from school or from spending a weekend with his Dad, I make sure that I greet him with a smile, that I look him in the eye, that I give him a hug and kiss or grab his hand, just that I acknowledge him in some way and let him know that I am glad he is home and that I missed him. It’s funny because now when he gets home, he gets excited, just waiting for me to see him and acknowledge him. When I tuck him in bed at night, after a weekend with his Dad, I make sure to tell him that I am glad he had fun at his Dad’s but I am glad he is home because I missed him. I really mean that. I make sure that from the time I put in my contacts in the morning from the time I take them out, that I give him my best.
But I also think it’s important to have a good attitude when working with him because these children have a difficult life. If I think that everything I do for him is hard, it has to be ten times harder from his perspective. Trying to walk when he was younger, when he couldn’t, was tough. Trying to use your hands and arms when they don’t work is tough. Having to have someone help you eat, or get a drink or change your diaper or wait on you 24/7 is tough. That doesn’t mean that he can understand the big picture but surely a child can get a sense when they are burden and when you are genuinely happy to see them.
The other day, I came across one of his former IEPs (Individual Education Plan) at school. It was written by his Occupational Therapist at school. The man was describing Dear Son’s strengths and wrote: “Strengths:
* Very engaging, aware of others and his environment.
* Gets excited about novel and preferred activities.
* Laughs joyfully.”
He went on a listed a few more. His challenges were few, but huge: dependent for all self care and mobility and limited communication skills.
I thought about this description a bit and how challenging his life can be. We need to do more to help these children and when we change our attitude by focusing more on what we can do for someone else and less on how hard it is for ourselves, somehow everything seems easier. In the end, I suspect that it’s just another one of the life lessons Dear Son taught me. When you focus on helping others, you ultimately help yourself as well.
Note: Dear Son is seventeen years old, suffers from a progressive neurological disease and intractable seizures as a result of a random mutation of the ARX gene. This mutation causes Infantile Spasms, dystonia (movement disorder) and severe mental retardation. He is unable to speak, uses a feeding tube and can not stand, walk or roll over on his own. He is however, a happy teenager who loves people and loves school.