Sunday, January 4, 2015

Respecting Preferences

As a wife and mother I strove to keep a happy home. I wasn’t the best at housekeeping but tried to maintain some sort of organization. I encouraged laughter throughout the day and kept music playing. I did these things and more to keep family members, including myself, content. This wasn’t always easy with a child who could tantrum at the slightest thing. One never knew when Jessica might erupt into a head banging, hand biting, feet kicking and let’s not forget the screaming tantrum. She could enjoy playing with a toy one minute and send it flying in the next. The things that would set her off may be just the things that would have her laughing the next day.

Fortunately, Jessica did share our love for a few things like music, Disney movies and sweet snacks. She did have her favorites which I discovered could turn an ugly mood around. Listening to Anne Murray’s “There’s a Hippo in my Bathtub”; any Raffi album always got her laughing. To our delight she enjoyed the folk music Koosh and I liked to listen to like Roger Whittaker, Chris de Burgh or Stan Rogers. She did seem to prefer the baritones or distinct styles of these artists. So this part was cool. Unfortunately, there were a few songs that would irritate her right in the middle of the song so we would have to skip portions to prevent a meltdown. This even happened when I would sing one of her favorites “This Old Man”. The eighth verse would make her cross so I would go from seven to nine.

So as you can see, Jessica could be pretty persnickety. She was also a child of habit. She could watch or listen to what she liked over and over and over again. As she got older there were those who believed that watching Disney or listening to children’s songs were not age appropriate and tried to ‘wean’ her of them. I pointed out the fact that we as a family still enjoyed watching Disney or listening to children’s songs. After all, I was in early childhood education and learned mostly children’s songs on my guitar. For some reason, this did not seem to have any effect on their beliefs and they would go to great lengths to keep Jessica away from ‘childish’ practices.

I put my advocate’s hat on and met with the Director of the Association responsible for the hiring of these individuals who were not addressing Jessica’s needs. Seriously, I have to advocate so that my Jessica can be allowed to watch and listen to things she enjoyed? Why yes, I did win on this one. I wouldn’t let anyone prevent me from going to a Disney movie, wasn’t Jessica to be given the same consideration? So Jessica was once more, allowed to pick out her own types of music, genre of movies, and even TV shows. She was very clear with her response as to what she enjoyed and we owed it to her to respect her choices whenever health and safety were not compromised. As it turned out, she not only appreciated the tried and true of her childhood but also was known to adore the likes of “Diagnosis Murder” (probably because of Mary Poppins' Burt) and the CNN news. That’s our Jess!

Saturday, January 3, 2015

Potty Training?

The hours I spent sitting on the edge of the tub waiting for Jessica to ‘tinkle’ so that I could positively reinforce the action. To get to this point, I had to find the right toilet seat that would give her the feeling of security and not that “I’m going to fall into the toilet” feeling. I found one that had steps and railings on either side. It was truly the throne of all thrones for the young person in training! Except this child wasn’t 2 or 3 years old. This child was 6. I had started this process in the spring and come summer it was clear I needed a break! My niece was looking for some part time work and she was taking psychology at a nearby university, so I asked if she might be interested in putting some hours every other day to help me. Jessica loved her and I felt we might make some head way.

There were days we did have success in 1) catching Jess before she went pee; 2) catching Jess just as she needed to go pee; and 3) actually having her pee! I wish I could say that Jess learned that summer to identify when she had to go and we said good-bye to diapers once and for all but in reality, here we are, 28 years later and elated that you can now purchase adult diapers.

My niece, Kathy and I did do our best. Sometimes it would just be one or the other with Jess in the bathroom, sometimes both of us together. Singing songs, reading books, doing finger plays, all to while away the time until we heard the sound of success. We turned on the water, we poured warm water between her legs, all to stimulate and bring on the desired end result. Sometimes we would be so tired, we would start to laugh at this situation, all of us in the bathroom, Jess would even join in the laughter although I don’t think she realized what was so funny.

I should take a moment and try to describe our bathroom. It was by no means large. To sit on the edge of the tub brought you in close proximity to the toilet and the sink at the same time. Did it get a bit warm in there with 3 people crammed into it? You bet.

That summer became one for the history books. I don’t know if anyone out there has had a similar experience to this one, but it did teach us patience beyond belief and how to endure discomfort to the nth degree. Jessica indulged us and allowed us to perform to the best of our ability but deep inside I really believe that she thought us to be quite foolish. She had no desire to pee in a toilet. The diapers worked very well as far as she was concerned and they were always changed shortly after they were ‘used’ so she never suffered with any rash or the like. Silly, foolish people we were.

Friday, January 2, 2015

Say what you want to say...

I always believed that Jessica might talk someday. My dreams had indicated that she would just start talking and I would be amazed at what she said. Her words reflected years of waiting until the right time to express herself and once she did, it was nonstop! These dreams fueled the fire of my hopes for many years. I never stopped prompting her, working with her, imitating her sounds, all in hopes that my dreams would come true but to this day they have not. Notice that I still cannot bring myself to say she will never speak, miracles have happened before.

Others have had such dreams of Jess speaking as well. When they share these dreams with me, I can see how Jess has entered their thoughts and I realize each time what an influential person Jessica is. I can honestly say that to know Jess is to know another level of yourself and the depth of understanding how someone as challenged as Jess can change your life and always in a positive way.

I do reflect on whether I did enough to try to tap into Jess’ capabilities, to free her from her silence. I look back on the word boards I created with the “yes” and “no” and how I would ask questions and follow through only after she pointed to one or the other. Sometimes I would provide assistance (hand over hand) when I knew what the answer would be. All the same, she never internalized the process. It was like she would humor me for a bit then just shut down always leading to feelings of frustration on her part, my part or both.

I remember chancing upon a new toy to give her for Christmas and being so excited at her interest but then it was gone…
Should I berate myself that the mystery was never solved? There are feelings of guilt as any parent might feel when they have failed to understand their child, or be able to fulfill their child’s needs. Sometimes we just need to accept various degrees of potential and acknowledge the small successes along the way. I have to admit that even though speech eluded my Jess, we did communicate in many other ways. Many times I was able to “guess” what she was trying to indicate just by her facial expression or her gestures. Those special moments when I saw in her eyes that spark that seemed to tell me “Mom, you got it!”.

Still, I wait for her to someday be able to say “mom”. I don’t think I will ever stop hoping for that. There’s just something about her that silently screams to get out. I think to myself, how can there be understanding with no words? And I do believe she understands…so much.

We were able to teach her to point and to lead you by the hand to indicate what she needed or wanted. Sometimes this would lead to what she couldn’t have and you just wanted to let her have it anyway because she had worked so hard to “tell” you. Silly isn’t it? Even at these times, you still can’t always get what you want…