Tuesday, July 21, 2009

Rug People

Jessica had some strange actions. Very bizarre that would leave you wondering 'what is she doing? seeing? thinking?' One example of this was when she would drop to the floor in a crawling position, look at the floor and burst out laughing. She did this quite often. You would swear their was a TV monitor in the floor. One day Melissa asked me why she does this and I said she is watching the "rug people". This became the running joke any time Jess would display this behavior. One has to see the humor, don't you think? She seemed to be watching something, who knows? Melissa and I would make up stories as to what the rug people might be doing to make Jess laugh so.

Sometimes she would hear a noise and freeze and move at the same time. Can't picture that? Well she would be so rigid that she vibrated then she would quickly turn, run to the couch and laugh. Honest, she kept us in stitches and moments like this were so important when in the next breath she could be tantruming to beat the band.

These moments gave us something enjoyable to hold onto. We would go to great lengths to discover more of what would make her smile and laugh. We were a family who valued laughter very much. Nothing was off limits and if you made a mistake you could be sure it would be poked fun of and not in a mean way, a way so that you would not take the situation so seriously. If you can't find the humor in life, it can be quite sad.

So I guess I just wanted to reveal that Jessica brought a lot of humor to our family and we are grateful.

Friday, July 10, 2009

My Child is Challenged

Being a parent of a special needs child carries such a mixed bag of emotions, responsibilities, judgements, disappointments, expectations, just to mention a few. An acquaintance once remarked that I had "such a cross to bear". I would never have termed it so and I responded that until you have the experience of having a child with challenges, you have no idea of the blessings they bring to a family.

Each member of my family has been influenced to some degree by Jessica, of this I am sure. And because Koosh and I have tried to be as positive as our capabilities allowed, I believe the influences have been for the most part, very positive.

My niece, Kathy, was acquiring a degree in Education and when she was in a class that encompassed behavior management, she aced it because of the summer she had spent assisting me with Jess' programs. In our many visits with Jess' cousins, they displayed such patience and empathy to include her as much as possible in their activities, short of that, they were always talking to her and giving her attention.

Even when she attended school, I was taken aside by one of her teachers one day who told me the following: "As a teacher of this class I was not looking forward to a certain little boy beginning the year with me. For the past 4 years, he has been extremely difficult in all his classes and I feared for my turn with him. But I must tell you, he has taken a shine to your Jessica. I have never seen him so caring and gentle with any other student. I have been able to overcome my preconceived notions on this student because Jessica has brought out this side of him that I have never seen before. I will never prejudge any student again. Any child, given the opportunity, can reveal wonderful things about themselves. I feel blessed to have Jess in my class."

I can not tell you how this made me feel. Very few people "get it". People like Jess come to us to teach us something we would normally not be taught. We need to embrace the wisdom that comes from such a relationship. Jessica is a gift and I am sure anyone reading this knows of a Jessica in their lives that had they not had the interaction, they would not be the person they are today.

Communicating with Jessica reached a whole new level. It was beyond words. It encompassed body language, gestures, feelings and intuition. More on that to come...

Tuesday, July 7, 2009

Safety

This past Friday afternoon in Tulsa, Okla., a five-year-old with autism wandered away from home and was tragically killed by a car. This is beyond anyone's scope of a tragedy. It was for this reason that during Jessica's growing up years, her bedroom door had a lock on it, from the outside. Most people supported my decision but there were those who felt it may be abusive. I am going to tell you, I needed to know that my daughter was safe at night so that I could get the rest I needed to cope with the challenges of the next day. I needed to know that if there was a fire, I would be able to find her. Her room was to her like my house was to me and I always locked my house at night.

Before there were locks, I would make sure outside doors were locked at night. I would make sure that the basement door was closed tight, oven was off, coffee maker off, etc. One night I was awakened to a loud thump, thump, thump that could only be someone falling down the basement stairs. I jumped out of my bed with a loud "Oh my God" yelling from my mouth. I knew it was Jess and whether I had left the door ajar or she had finally been able to turn the knob, I do not know. Koosh was right behind, having not heard the thumping but just my yell he was shouting "What, what?" I got to the basement door, it was open and only darkness was beyond. I could not hear a sound. There was a brief instant where I was petrified to turn on the basement light. When I did, I looked down the stairs and there on a mountain of laundry was Jessica smiling up at me. "Aga" she said.

Did I count my blessings? More than once. And then I went to the hardware store and bought a hook and eye for Jessica's door. I was not about to risk that again or something worse. Jessica is older now and living in a family home. She has rights and I am thankful they are attended to. Her family has an alarm on the doors. Works very well. I don't regret putting the lock on her door and will debate anyone who believes that it didn't keep her safer.

The 1st Seizure

Seems like I was always moving Jessica back from the TV. She would rock back and forth on her tumble form and watch Sesame Street or Mr. Dressup. Giving her thumbs up or thumbs down in her own way.

I have to tell you about her tumble form. It was one of those things that I 'felt' I had to buy her. Ever since she started wearing shoes I would have to uncurl her toes to put her feet in her shoes. For this reason, I would have her wear her shoes as much as possible to keep her toes from curling under. The tumble form was this barrel shaped vinyl form that she could curl her body on and push back and forth with her feet. This helped exercise her toes and I believe reduced the curling a great deal. She got the tumbel form when she was about 3 and after being recovered once, still has it to this day. (Although between her size and the feeding tube, she does not use it much anymore.)

There were times when Jess would leave the tumble form in the middle of the floor and walk up to the TV and get real close. It was one of these times that I glanced in the room to see her fall back with such force that it seemed like the TV pushed her. I went to her but she was already getting up. She laughed a bit grabbed the tumble form and started rocking back and forth to beat the band.

At her next doctor's appointment, I mentioned these episodes (as she had had a couple more). Her doctor thought it may be some form of a seizure and set up an appointment with a neurologist at CHEO (Children's Hospital of Eastern Ontario). They performed some tests with lights and also an EEG with lights as well. Her tests came back that indeed she was experiencing some seizure activity. I was grateful that she recovered from each episode so quickly (petit mal) and had no lingering effects afterward. Due to the "knock down" force they thought it would be best to see if depakene. This is an anti-seizure medication in liquid form that she would take in the morning. The dose was low and this infact did help reduce the instance of seizures. Every once in a while though, she would do a kind of head nod and sometimes drop which indicated to me and her team that they were not gone for good.

Speaking of an EEG. That can be a very traumatic test for a young child. Although it is not painful, it requires time to 'glue' the sensors on to their head and other parts of their body. They need to be still and calm during the readings. Jess required a mild sedative to have the test be successful. Because Jess enjoyed music so much, I would always sing to her when she was stressed. It did not matter who was present in the room, I would sing softly and quietly. There were times when staff would join in, many times I received complements on how Jess and I were in such tune with one another. I would give the medication to Jess that she needed as we had such a routine to it. To this day I still love demonstrating the way I would administer medication to Jess as it was over before anyone knew it and nothing got on her or my clothes!

Monday, July 6, 2009

Christmas Past

My favorite holiday has always been Christmas. The music, the lights, the caring, everyone always seemed to get along. I loved it. After I had children I hoped that they would love it as much as I did. They did.

When they were small, we would chop our own tree from a friend’s farm, not so much fun with Jess, she didn’t really like the trekking into the woods but we tried to keep it a family activity.

I would decorate the whole house. There were decorations for even the bathroom. Jess wasn’t more than 2 when she let it be known that she loved Christmas music and lights. I would lay the string of lights on the floor to test them and she would go into hysterical laughter as soon as even one would light up. I had a cedar chest in front of one of the living room windows and after I framed that window with lights that is where Jess could be found any time of the day. She would sit on that chest staring intently at the lights, flapping a hand to her throat and laughing.

I had collected Christmas albums all my life and come Dec. 1 I would play them all day, much to the chagrin of Koosh. One of Jessica’s favorites was Wayne Rostad – Christmas in the Valley of which there was a different one every year for about 5 years. She also enjoyed Perry Como, Bing Crosby, Johnny Mathis (all she had to hear was the first notes of "Chestnuts Roasting on an Open Fire" and she was in 7th heaven!), Anne Murray etc, etc, etc, - my collection was endless. Jessica so enjoyed the music that we began playing it in the background of our day every day. Whether she had the TV on or not. Whether it was summer or not. I remember one day when the priest came to visit Melissa who was about to make her First Communion. He stepped into our house on this sunny day in June and after a few minutes, cocked his head and asked if that was Christmas music he heard in the background. A bit embarrassed I said "yes it was" and explained how much Jessica enjoyed it. He said “no explanation necessary, happy the home who has Christmas all year round”. I have never forgotten that, it made me feel so privileged.

About 2 weeks before Christmas, we would go get that tree! The getting may have been hard but decorating it that night made it all worthwhile. As soon as we had it upright in the stand, we brought out the lights and once again Jess would get so excited. She would roll her tumble form as close to the tree as possible and rock back and forth looking at the lights and listening to the music. You almost thought she would bust with happiness.

The first few Christmases we would add the tinsel at the end but we gave that up as the static electricity would just make it cling all over Jess who was so close to the tree all the time. She would make her objections known through sounds of anger. We stopped putting it on after that. We also had to do away with the “real” tree and purchased a fake one. Jess would sometimes grab the tree making needles fall. The needles would get stuck in her socks and you guessed it, more objections.

One year she rolled so close to the tree that when she gave it a tug, it fell down on top of her. I was in the kitchen when I heard Melissa scream for me. I ran in to find the tree down and 2 feet sticking out from under it. When I stood up the tree, there was Jess, “aga” she said and smiled.

Feelings

It is hard to relay to others when you feel you have been born with a special gift. Talent like a beautiful voice, artistry, expression, etc are all skills one can display and not be questioned about. But what if you pick up feelings? In my case the feelings of children. It has only been recently that I have discovered that this gift has been present all my life. It was something that I thought everyone possessed and so for that reason, I would get so frustrated when people misinterpreted what a child needed.

The most misunderstood need is sleep. Children need to be rested to be happy, to be able to cope, to understand the bombardment of concepts in their growing years. It always seems that excuses are being made as to why a child won't nap or go to bed at an early hour (7:30pm-8:30pm). "Johnny doesn't need a nap anymore", those words used to make me cringe when I worked in child care. Johnny may have been anywhere from 2yrs to 5yrs old. If he napped he would give mom or dad a hard time to go to sleep that night so by taking his nap away, the child was so exhausted that mom and dad would have an easier time. Poor Johnny was so tired after his lunch that it took one on one attention just to keep him awake! I am not saying that the child should snooze for 3 or 4 hours but it was clear that he needed to recharge his battery. The afternoons were filled with reminders to get along with others, share, we don't bite our friends, we don't hit our friends or just plain whining and crying that could not be controlled. Is it any wonder that Johnny would fall asleep on the way home and barely eat his supper if he could stay awake for supper at all?

Rather than take a look at what the routine was just before bed, the mom or dad would rather the child go through a horrible afternoon! Sometimes children wake up completely refreshed in 30 minutes. Sometimes children just need an hour. Rested children are happy children. Bedtime may be a challenge but a child should not reach the point of exhaustion in order to be able to fall asleep at night. What kind of adult will this child become?

I guess I am in for it now..."my child is healthy and doesn't nap" someone will say and if that child is happy and able to cope throughout the afternoon, I will totally agree. This is not for you. But if your child is face first in his supper plate, you may want to rethink the no nap policy. And I am talking about the night after night group. Every child will have an exhausting day from time to time but when it is day after day?

Children do have a hard time settling down for naps most of the time. They have been playing hard all morning and now we want them to relax. Hard but not impossible and the rewards are many. Friends used to ask how I was able to settle children down when their efforts proved fruitless. I used to try to explain how to read their body language. Get in their motion. Patting backs to their rhythm. People would look at me and wonder what the heck I was talking about. I thought I was explaining myself very well. But I observed others using my techniques but not paying attention when the child didn't respond and then not changing the technique to meet the child's need.

I would say that you need to rub his back lower/higher/softer/deeper/in a rocking motion. They would say, "but how do you know that?". I just did. Once the child developed a routine, it got easier but before then, you could be assisting that child to relax for up to 30 min. but you are not just "putting them to sleep", you are helping them to recognize their body signals, teaching them to control themselves and reach inner peace. It's a beautiful thing.