Tuesday, June 30, 2009

New Shoes!!!

One day I went to visit my friend Janet. While we were visiting, the mail arrived which included a package. Janet’s 4 year old daughter, Hillary, was very interested in what was in the package. Janet and I played with Hillary’s imagination by asking her what she thought it might be and she replied “new shoes”. I don’t remember what the contents turned out to be but what I do remember is that Hillary wanted to keep closing the package up, have us ask her what could be inside and the reply was always the same “new shoes”. Janet and I were cracking up with laughter. Even the thought that ‘shoes’ would be the item Hillary would pick every time just brought smiles all round.

I thought of that day many times when Jess was little. She too had a fascination with shoes. Her favorites were the pairs of sneakers that I would buy her. Her first pair was white, then I got her a pair of blue and finally a pair of red. Each pair was a bit bigger as she outgrew them. I dared not get rid of the too small pairs as these shoes became one of her favorite toys. She would turn them over and over in her hands and laugh. One day she brought a shoe up to her mouth. I jokingly shouted to her “don’t eat your shoe!” which caused her to go into such a belly laugh that when she brought the shoe up to her mouth again, I did the same thing. This became one of her favorite games with me and if I wasn't watching, she would “aga” me to get my attention so that I could shout the phrase “don’t eat your shoe!” again.

She started to ‘eat’ other things just to hear me shout out: “don’t eat your pillow!” “don’t eat your sock!” “don’t eat your book!” Always prompting her to laugh like there was no tomorrow. Did I tell you how much I love to hear her laugh?

Wednesday, June 24, 2009


Ever since Jess was an infant, she loved water. I would give her baths in the kitchen sink and she would slap the water and laugh. When she was big enough, she took her bath in the tub. We would put any plastic toy in with her and she would play. By the time she was 2 years, she could stay happy in her bath for over an hour. She loved it so much that I would add warm water to let her play longer.

She liked laying on her stomach looking at her hands moving underneath the water. I would put a facecloth in the water and she loved taking it out and watching it drip. Water made her happy. I would sing to her "Splish Splash I was taking a bath..." and her laughter could be heard throughout the house (or was it mine because when Jess was in the tub, everyone was happy).

One night I had just put Jess in the tub and went to get some towels. Melissa came up behind me and asked if she could get in the tub (they loved to take baths together). I told her she could and lickety split she was in the tub, clothes and all.

In the summer time we started with the wading pools. We could enjoy the fresh air all day as long as there was a pool of water to play in. One day I even cut her hair while she was in the pool, it was the most cooperative she had ever been throughout the process.

Wading pools got bigger as the girls grew and before you knew it, one summer we purchased an above ground pool. Jess was about 10 and Melissa 8. Jess still wore her swimmies but Melissa was a good swimmer. Having this pool was the best decision we had ever made. It benefited our family so much. It was the one activity that we could do as a family. Whether Koosh and I were in the water with them or sitting deckside reading a book while on "watch" everyone enjoyed the experience. As Melissa got older, she invited her friends over and there was always someone around modeling social behavior to Jess. Jess loved the interactions. We had many friends who also had children from babies to teens and we all played with Jessica. We even added a heater which prolonged the season for us and also provided Koosh and I with some nice private swims in the evening.

Spending time in the pool could really turn a tantrum filled day around. I can't imagine our lives without the enjoyment we got from our pool.

Friday, June 19, 2009

It really does take a village...

Koosh and I had made our home in the small town that Koosh grew up in. Koosh was well liked and had many friends. Being an ‘out-of-towner’, I was grateful that his friends were so nice and, well, friendly. I felt that I fit right in.

Everyone was happy when Koosh and I started our family. Most of them had already started theirs and became great resources of advice to us. In fact, there were many whose families consisted of 2 girls so when we had likewise, we also reaped the benefits of a very nice wardrobe. I don’t think I needed to purchase a stitch of clothing until my girls were almost 10!

Although we had many benefits to having friends with children, there was also the realization that our family was limited in the activities we could participate in as a family. We watched as other families enjoyed outings that we could only dream of. Even the experience of going to a restaurant, all four of us, became extremely difficult. We spent many hours visiting other families – Barb and Denny who had Lindsay and Leslie; Claire and Jane who had Allie and Suzanne; Shig and Jean who had Susie; Elaine and Ron who had Jennifer and Justin; and many more gave us the opportunity to share in their family experiences even if it was in their homes or ours. Many of them had pools and swimming was the thing that Jess enjoyed the most!

There were times when I observed other families complaining about the restrictions that they endured for one reason or another and I would want to shake them. “Look at what you got!” I felt like shouting at them. “Don’t take these moments for granted!” But the friends above got it. They loved one another and never took one moment for granted. I would like to think that there were times when they would think of our limitations and count their blessings, I am sure they did. But they gave us so much more. They accepted the fact that even with our limitations, we were a family and we were doing our best. And with all of Jess’ challenges, we loved each other very much. And I will always be grateful to them.

Sunday, June 14, 2009

In Praise...

Dr. Ken was to provide me with consultation for the next 10 years. As with most autistic children, treatment is ongoing. New situations evoke new or for that matter old behaviors which need to be addressed. Dr. Ken's advice was to make me a better person, able to understand behaviors of all children. I have applied his advice many times over with positive results. I am not saying that I always agreed with Dr. Ken and he would be the first to say otherwise. I became his "devil's advocate" as much as he became my "savior". I was able to help other children because of my experience under Dr. Ken as well as despite of it. I like to think that I was able to acquire a deeper level of intuitive understanding and apply it.

"Behavior Modification" conjures up more debates in this society than not. I believe that there is much to learn and that it provides many tools that parents should have in there "toolbox". People believe it is a cold application and negates where children are on a developmental level. I like the way it cuts to the chase. Is the behavior appropriate or not? If not, talking about how it is not can be highly overrated and I guess I will be taken to task for saying so.

Dr. Ken used to say that the biggest mistake is to be constantly on a child to do the appropriate thing. Children will behave appropriately many times and it is up to us to acknowledge this to the child - "catch them when they're good". Balance of "catching them when they're good" and addressing inappropriate behavior is really the basis of success. Deep rooted in this is consistency.

I have always believed that children are a gift and should be granted respect from birth. There simply is no future without them. Rules in my house have always been realistic and expected. Children know where they stand in my company. Appropriate behavior gets praise, smiles, hugs, enjoyment, play...you name it. Inappropriate behavior results in consequences. Pure and simple and for the most part, guess what children will choose?

God bless the children, sometimes they understand it better than the adults...

Monday, June 8, 2009

Behavior, B Word

Dr. Ken's third task was to address tantrums. These were not your everyday tantrums, they were self injurious and violent. As I have said, Jess would bite herself in anger or frustration. Mostly her hands, but she would bite her arms as well leaving bruises. When she would bite her hands, she would put the front side of her hand in her mouth just above the thumb and violently pull it out leaving large welts which became open sores. To wrap her hands only made her angrier but at least would allow her hands to heal somewhat until she worked the bandages off.

Other times in anger she would throw herself backwards on the floor and bang the back of her head relentlessly. Any move to stop her would result in more anger and the chance of being bitten as well. It is a painful situation on so many levels.

Dr. Ken began by showing me how to restrain Jess without hurting her or myself. Sitting behind her with legs crossed over her and holding her arms crossed over herself was very effective. You did have to watch that you position yourself slightly askew so that her head could not find contact with your breastbone as it has been discovered by many that a broken breastbone is very painful.

This restraint had to be performed with any tantrum that could not be controlled by any other means - time out chair, ignoring. Using other means were always the primary goal. Sometimes Jess did respond to ignoring for any kind of contact, if only a look, she would take as attention and would only repeat the inappropriate behavior. As I mentioned before and I think it is important to mention again, eye contact to a child is affirmation that this behavior will get attention. This is not good.

To use the time out chair, proved a little more difficult than 'typical' children as well. You could not just say "go sit in the chair and calm down". If the chair was used, Jess would need to be physically encouraged to sit on it. This did not work the best and you would spend more time holding her which did not give her the right message either.

No, if she was hurting herself and others, it more often than not resulted in full restraint until she calmed down.

The important thing to remember is that you have to try to fill the day with opportunities for appropriate behavior so that you didn't have to address inappropriate behavior all the time.