Wednesday, May 27, 2009
She received speech therapy to help her. Speech development depends on many things and one of them is being able to chew. A person needs to know how to use your mouth in many ways, blowing, smacking, biting. All these little skills contribute to the mouth developing so that it can speak and vice versa. This was to be one area that would remain undeveloped into her adulthood and probably for life.
Friday, May 15, 2009
Jessica always had a love hate relationship with eating. She was first introduced to cereal at the ripe old age of 6 weeks. A friend suggested I introduce a teaspoon of rice cereal at night to help her sleep. She seemed to take to it and indeed it did seem to help her sleep a little longer, like her stomach was full and she was content. By the time she was 6 months she would have a little dish. Sometimes she would eat what they called 'Farley's biscuits'. They were a large cookie/biscuit that dissolved in liquid. I used her formula or warm water.
By the time she was a year she was enjoying many different tastes including apple sauce, pureed pears, baby food and of course her rice cereal. Now any seasoned parent might pick up the fact that their was something missing here. Finger foods, yes. Jess did not do finger foods. In fact she had no desire at all to even hold her spoon. I would try to give it to her but she would not close her hand around it. I was to learn that this fell into the category of tactile defensive. Jess did not like the feel of it inside her hand.
This was one of the big reasons why Melissa became so good at independent eating. Melissa had no interest in soft foods. She nursed and then thrived on the bottle until almost a year and she became really good with finger foods. If I was to try to feed her with a spoon, she would grab the spoon in a blink of an eye and show me how to use it. Unbelievable.
But Jess would continue to be fed. It became apparent to me that there was another crucial skill that Jess was lacking...she was not chewing. She would mouth the food a bit but then swallow it right down. This can not be good. How do you teach a child to chew?
At the age of 3 1/2 years, Jessica was still being fed. She would only eat if I gave her pudding between each bite and if I sang to her. Her favorite songs were "If you're happy and you know it" and "This old man". And oh by the way, her food needed to be mashed as she still was not chewing. I shake my head as I write this. We had certainly gotten ourselves in a groove. Dr. Ken had his work cut out for him.
Dr. Ken wanted me to start having Jess hold the spoon. I would do this by putting her hand on the spoon and putting my hand over hers. This is called 'hand over hand'. Jess usually responded to this by pushing my hand away, screaming and then bringing her other hand to her mouth to bite herself. I can not tell you how intense this simple task got. I always felt I had gone 10 rounds with Mohamed Ali after every feeding session. The main thing was to never lose your cool. This would only complicate the whole process. We would go back and forth like this for no more than 45 minutes than everything was put away. If I felt that Jess was hungry, I could start the process again after an hour. Man I was tired, and emotionally drained. Should such a basic need be so complicated?
It would be months before Jess would allow me to keep my hand over hers on the spoon. During that time I was to allow more lumps in her food in the hopes that she would start using her teeth. I gradually increased the lumpiness. Instead of using a hand blender, I would use a fork to mash her food. Chewing still eluded her, I once said that I would have the only child who could swallow an egg whole. We tried sticking things on to her teeth - peanut butter with a little bread for example, in hopes that she would work it off using her teeth but it was always her tongue that got the workout.
Monday, May 11, 2009
Children do learn to eat but eating healthy is up to us to teach. Children will sleep but to be able to identify their body's signs of fatigue is up to us to teach. Even eliminating waste is automatic but learning to do it in a way that is accepted by society is up to us to teach. These are really difficult skills to teach. A parent needs to be patient and understand when their child is developmentally ready to learn. This can be very different from child to child and no one knows this better than I.
The means in which I taught Jess were very different than my approach to Melissa. I will tell you, one thing I needed to develop and be very strong with was consistency. That is what I have discovered works for any child. A parent who is inconsistent confuses their child. A confused child is an apprehensive child, never really knowing what the outcome will be. They act a certain way one day and elicit one response, and another day a different response. A child's psyche is very fragile and needs parameters. Some call it discipline, which should never be confused with punishment.
I have cared for many children who thrived when I responded the same way every time a certain behavior was displayed. They loved the way I would balance catching them when they were good and disciplining them when their behavior was inappropriate. They could always count on me to do what they thought I would. It became very easy to increase the appropriate behaviors while decreasing the inappropriate. But I hinted at the following in my very first blog, I heard what they wanted. I could pick up their vibes as to how I could get the response that I wanted from them.
I could visit a home and right away pick up how a child was feeling. A parent might mention that the child was never taking naps, and look how active the child was, obviously the child was not sleepy but I say to you that I knew the child was exhausted. I saw a child who was heading towards the point of no return. They had no control over what they were doing. Maybe the child became destructive, violent, weepy, whiny, overactive, under active, there are so many signs but it all boiled down to exhaustion. Sleep is extremely important in a child's development and should never be left up to the child to decide when, where or how long. A parent needs to take control and assist the child to develop healthy sleep habits.
I have always wondered if a child who never learns to sleep through the night ever suffers from insomnia as an adult. Look at the child who doesn't learn healthy eating, this can have an effect on if this child will suffer from eating disorders or obesity. It is so simply complex!
Sunday, May 10, 2009
Fond Memory - I remember going into Jess' room when I was 9 months pregnant with Melissa and trying to sit her on my lap to rock. Jess would sit facing me with her body over my swollen stomach and her head resting on my chest. This one night, Melissa started kicking from the inside and Jess sat up, looked down at my stomach as much to say "What was that?" before getting comfortable again.
Dr. Ken wanted to set up a schedule right away. He felt that we could get Jess to go to sleep after only 1 rocking period at bedtime. This sounded incredible. He asked me what time I would like to put Jess to bed, 7:30pm? I thought 8:00pm would be great. So he suggested that I take Jess to bed at 8pm, rock her for 15 minutes, give her hugs and kisses, say good night and walk out of the room. I would not go back in until morning. I was to be prepared for cries and I didn't know how long they would go for but he assured me that within a week I would see them decrease. That night I looked over her room to make absolutely sure that nothing was left that would cause her any harm. I did as I was told, after all I was desperate! I had to give it a try but I was so scared.
I followed the schedule as suggested and prayed. When the 15 minutes were over, I put her to bed giving her lots of hugs and kisses and then I said 'good night'. I walked out with fingers crossed. Terry was still with me and the 2 of us went downstairs. We actually went down to the lower family room. It wasn't long before we heard her objecting cries. We heard her bang on the door. We listened and timed her. After 45 minutes her cries had stilled. I waited another 15 minutes and then went in to check on her. I found her lying on the floor beside her bed asleep. Gently I placed her in her bed and tucked her in. I was crying. She would awaken a few more times during the night but I did not go in. Within 30 to 40 minutes she would be asleep once more and every time I would wait then check on her always finding her asleep although she would be on her bed. I covered her again and would go back to bed until the next time. It was extremely difficult but I had to give it a shot.
On the second night, after her rocking, she only took 30 minutes to go to sleep. She only woke up twice during the night. On the third night it was 20 minutes before she slept still waking up twice in the night. On the fourth night she didn't cry. She didn't cry. I waited half an hour before I checked as I couldn't actually believe what I was not hearing! But when I went into the bedroom, there she was laying where I had said good night to her with her covers still on! She never cried at bedtime again! She still woke up once or twice in the night but only for a matter of 15-20 minutes and she would fall back asleep. Sometimes I would find her on the floor just inside the door and I would put her back in bed but most of the time she had made her way back to her bed and I would just need to cover her.
Sleep problems are common among children but especially those with developmental challenges. Some typical children will overcome sleep issues through the family bed, 'ferberizing', an active bedtime routine or a downtime bedtime routine. God bless them but for the rest who just have difficulty for whatever reasons whose parents are pulling out their hair, a more intensive approach may be necessary. I encourage any parent whose physical and mental health are suffering due to sleep problems of their child to get help.
Jessica still has nights that are difficult but they are few and far between due to a consistent approach by her care givers.
Saturday, May 9, 2009
The case worker, Pat, arrived first. Dr. Ken was to arrive about 10am so that gave me about an hour with Pat. Pat had many forms and questions for me to answer. Like all the doctors before her, she asked about the pregnancy and birth. My answers became a recital - a bit of morning sickness that plagued me throughout, lots of pressure in the last trimester, head was engaged for a month prior, epidural worked so well that I had no idea what muscles I was using, forceps came into play, Jess cried instantly and her apgar score was 8-10. She nursed well (included spit up story). She is beautiful but certainly displays behaviors that need to be addressed.
Pat was very patient with me. She was certainly concerned about my extreme fatigue and hopefully they would be able to help with this 'intervention' and the situation would be better for all. I made coffee and Pat met Jess. We had set up an area on the floor with all of Jess' favorite things and Pat interacted with Jess' on Jess' terms. Pat let her lead and followed her cues. She took a couple of notes. The program, she said, is behavior management. We are going to help Jess manage her behaviors and shape them into more appropriate ones.
At this point there was a knock on the door and I let Dr. Ken in. Dr. Ken was a pleasant looking man who seemed confident in how he could help me. Dr. Ken explained that Pat would be coming in every day to help guide me in addressing situations where Jess would display self-destructive (hand biting, head banging) and inappropriate behaviors (extreme tantrums). The first thing he wanted to make clear to me was that this program required me to make changes. I was rather taken aback at this. What was I doing wrong? It was Jess who needed to change and I voiced my concern. He went on to explain that many of my responses could increase inappropriate behavior rather than diminish it. Example: when a child has a tantrum in the store and is given the toy that was denied which caused the tantrum to begin with, that child has just learned that tantruming is the skill to master as it gets him what he wants. This made some sense to me, keep talking. If a parent doesn't follow through on consequences, that child's behavior, that the parent wants to go away - won't.
He asked me to identify 3 of Jessica's behaviors that I would like to work on. Three is pretty much the maximum that should be worked on at a time. I thought we should start with sleeping, head banging and eating (she was over 3 yrs old and still being fed). He explained that we would need to chart those behaviors in a certain way. On a piece of paper he put the headings Date/time - A - B - C - with a blank column to follow after C. He taught me that A stood for antecedent; B stood for behavior; and C was consequence. I would have a new chart every day. And at the end of each day I would put the information on a graph and at the end of two (2) weeks I would present this graph to Dr. Ken who would assess the information and put a plan in place.
These 2 weeks were called a baseline. The information would identify situations (A) that would cause a behavior (B) to present itself which then prompted a response or action (C) from me or anyone else who may be with Jess at the time.
-Now you may be asking yourself, why am I including all this technical stuff in my story. Maybe it sounds a little confusing? Are you a little overwhelmed? I was. I was just a mom of 2 little girls. How could I wrap my head around this? Much less do it? What Dr. Ken was advising me to do seemed so cold, at times neglectful.
Dr. Ken wanted me to reduce my eye contact with Jess. He wanted me to understand that this was a form of attention which children seek out no matter what. Did you know that a parent who beats their child may still be loved by that child because the parent is showing them attention? That sounds bizarre! I would never think of harming my children but even giving eye contact to a child when they are in the throes of behaving badly will make that behavior increase because of the attention you are giving them!
This sounds crazy but I could definitely see where, in most situations, this is true. Don't we remember 'the look' our parents would give us when we knew we had stepped over the line? If we got 'the look' we knew to stop what we were doing because it was something our parents did not approve of. If this approach worked it is only because the consequence was adversive and consistent and that's what prompted us to stop the behavior. But can you also picture the child who looks for your attention when he is about to do something he is not supposed to? What is his motivation to do the one thing you keep telling him over and over not to do? Could it be your attention?
Wednesday, May 6, 2009
As I watched at the fence all the children at play, Debbie, mother of Megan with developmental delays came over to talk to me. Debbie's Megan had similarities to my Jessica. She had behaviors that needed to be addressed and they had just come back from a behavior program in Ottawa, an hour away. She shared with me her thoughts about how there was a case worker who under the direction of a Behavior Psychologist, would come every day to help you learn to address behavior issues. It was an intense program which lasted 2 weeks and you had to find a place to stay in Ottawa. Debbie believed it had helped her to 'deal' with her daughter's behaviors and Megan had shown a lot of improvement. She gave me the contact information.
When I spoke to CDC staff later that day, I mentioned that I was interested in the program that Debbie had taken her Megan to. They were very positive and thought that any skills I acquired through the program would definitely be helpful at the center as well as at home.
When I got home, I called the number Debbie had given me and reached Rosemary at Thursday's Child. She informed me that they would be able to work with Jess and I but that I would need to find a place to stay in Ottawa. Our friend, Lucy, had a home in Ottawa and was going away. She had no problem with us staying there while she was gone. Perfect!
Jessica was just over 3 years old when we went to participate in this program. Poor Melissa would stay back with Koosh. Shirley and her daughter Kathy were there to help and of course the grandparents chipped in but it was to be very hard for Melissa and I to be apart. Koosh and I made arrangements for him to bring Melissa for a visit the weekend in between. We would go to the park and see the tulips then.
So Jessica and I packed our things and headed for Ottawa one Sunday afternoon. The sun was shining and we found the house with very little problem. I had brought along a helper who worked with her at the CDC, her name was Terry. When we got into the house, we set up a play area for Jess and checked the sleeping arrangements. Jess would sleep in Nadia's room (Lucy's daughter). As we fixed the bed, we both noticed at the same time that there was a hutch on top of the desk. We took a closer look and discovered it was not attached in a permanent way. This was not good. Jessica had taken to being up at all hours of the night and if she could not leave her room, she would destroy it. The hutch posed a severe safety hazard. Terry and I got on each side and began to move the hutch off the desk so that it could rest safely on the floor. Something got stuck and Terry bent to adjust a leg on the floor, just then the hutch and everything in it tipped forward and fell to make a bridge if you can picture it. The bottom of the hutch was on the desk and the top was now on the bed creating a bridge. Terry was not in sight. "Terry?" I gingerly called. Out she crawled from under the 'bridge'. We stood there among books, knick knacks and such which a moment ago had been arranged so beautifully on the hutch and began to laugh. How no one got hurt was a miracle! We set to work putting the items back on the hutch which we had safely put on the floor. If Lucy or Nadia ever wondered what happened I don't remember them saying anything.
After we were done setting up the rooms, we went downstairs to fix supper. Tomorrow we would meet with the case worker and psychologist.
Sunday, May 3, 2009
Jessica was 21 months when Melissa was born. Even though she was not walking, she had begun to take steps. The doctor thought she would make better progress if she learned to crawl but to date had not shown any interest in that. She had difficulty going from one position to another. She could now sit up but could not stand up. If she was put in a standing position, she could take a couple of steps (complaining through shrieks) but if she fell she could not get up. PT suggested that one of us could lift her belly off the floor by putting a towel under it. This was Koosh's job as he was stronger than I was. While he held her just off the floor, I was to move her legs and arms to mimic crawling. I don't think that either one of us (Jessica included) ever bought that this would work. It's hard to say, and I will probably repeat this thought many times, what Jessica puts together in her mind but I will tell you that when Melissa began to crawl, so did Jess. When Melissa began pulling herself up on furniture, so did Jess.
In order to give Jessica the freedom to get from here to there in a more expeditious manner, she used a walker (banned in most households these days but I considered it most necessary). In fact I had one for Melissa as well. Our house only had one floor and I had put special knobs on the basement door. The 2 girls would run around that house chasing one another. In and out of bedrooms until they would meet face to face in the hall, screech at one another, and laughing head in the opposite direction.
I had Jessica's mattress directly on the box spring on the floor. If she ever fell out of bed, it would only be a 6 inch drop. In the morning, I would take her out of bed and put her on the floor of her bedroom to play while I gathered her clothes together. This one morning I came back to find her sitting in her bed. I believed I must have not taken her out, could senility be setting in? I took her out again and got her dressed leaving her to play. When I returned, there she was in her bed again. YAHOO! I made a big deal of it and she giggled, she seemed very proud of herself. From that point she could get in and out on her own.
Jessica and Melissa were very much aware of one another's presence. They certainly enjoyed each other's company but also seemed to realize each other's limitations. When Melissa was still using the wind up swing Jessica would go close enough in her walker to stop it from swinging. She seemed to get a kick out of Melissa's complaints. Oh and remember that bouncy chair that I thought was broke? Melissa could practically bounce that thing out the door! I couldn't believe her strength!
January of 1983 found Jessica enrolled in a Child Development Center 30 miles away. She was just 3 months over her 2nd birthday. It was believed that a more intensive program, this early, would address Jessica's needs and allow more progress. I was taken aback at first (the denial side of me felt that she did not 'belong' here) by the severe needs of the other children in her 'class'. The staff were extremely empathetic and supportive. Jessica would go there 4 mornings a week. They worked very hard with her and she began to be able to point to parts of her body especially her nose, that was her favorite. Melissa and I would take her in and wait for her, usually going to a park or store. We made the best of it and always enjoyed our time together.
It was while Jessica was attending the Child Development Center that I was introduced to Behavior Management.
Saturday, May 2, 2009
One thing I should mention before I go to far - at 7 1/2 months I started to wean her from breast feeding. As many of you know, this can cause constipation and boy did it, big time. I knew she was having trouble but it was suggested to give her some prune juice (watered down). One night she awoke in agony. She was screaming in pain! I took off her diaper and it was like she was giving birth. I now had to massage the area and work her legs and finally was rewarded. I could not believe that a bowel movement could be this large and not cause permanent damage. Unfortunately, these kind of bouts did not go away but I learned you could use a Q-tip and Vaseline as a suppository to help the muscles work it out. Stimulation proved to be a very beneficial skill as well. Again the problems she experienced were due in part to poor muscle tone and it took years before she would be able to get through these bouts on her own.
Through her therapists, Koosh and I were given specific exercises to promote crawling and upper body strength. Floor exercises took on a whole new importance and we did them as much as we could. At bedtime I was ready even if Jess wasn't.
At bedtime, Jessica liked to be rocked. There were nights when I would literally fall asleep rocking her and would be awakened by her body doing this jerking motion. She was telling me that the rocking stopped and get going again. Would this baby ever sleep? I just seemed to be getting more exhausted and she never tired. During the day, however she could sleep forever! A friend suggested she had her days and nights mixed up. I would have to shorten her afternoon naps. I didn't have the energy! I realized that they were right so I would let her sleep for 2 hours in the afternoon. Oh my, she was grumpy! It was all I could do to wake her up and then I spent the rest of the day keeping her entertained, exercised and happy. Would I ever feel rested again? The answer to that was yes, after say, another 9 months!
Yup, I was going to have baby #2! How did I tell Koosh? Well, I went to pick him up from work the night I got the news and after he got in the car I gently told him that the diaphragm did not work. He looked at me with this blank look and then he got it. We had talked about having more children but had decided that for the time being, Jessica was quite the handful so we would take some time to make the final decision. We wanted to make sure Jess got the attention she needed. Now, here we were, with the decision already made. I wish I could say we were ecstatic but we had been digesting quite a bit of information on Jessica lately. We were happy, and we would do the best we could with what we had. Life would be good.
I had always wanted a lot of children. I never thought I would have a child with the challenges Jessica had and we had just begun. Fortunately, our family and friends were very supportive. Koosh would visit them with Jess and allow me to get caught up on sleep. Jess was always up for a ride in the car or a walk in her stroller. She always wanted to be on the move unless it was physical. She still had not mastered crawling, even sitting was more leaning.
I bought her this walker that would act as a bouncing chair. It had a very supportive back and you could lock the wheels if you wanted it to be stationary. I needn't have worried. Jess could barely move it. I, of course, blamed the chair. Something must be wrong with it. As for Jess, she didn't mind as long as she had toys to turn over in her hands she was happy. She also enjoyed the wind up swing...until it stopped.
So for the next 9 months, we all would sleep whenever we could. Take turns exercising and playing with Jessica in between doctor appointments for Jessica and I. At least I didn't have morning sickness this time! Even in utero, I felt this baby was different. Not only were her movements stronger, but there were times I felt sure she had invited a few friends over!
About a month before I was to deliver this new little wonder, I spoke to Koosh about what we would name the baby if it was a girl. Since we hadn't used the boys name the first time around it was still up for grabs but we hadn't thought of another girls name yet. We had taken my brother, Michael's advice about the rhythm of a name. It should be balanced in syllables. When I mentioned Jessica for our first born, he had suggested that since there was 3 syllables to Jessica, the middle name might sound better if it had only 1 syllable. That is how Lynn was chosen.
So here we were again, trying to find a good name. We just hadn't zeroed in on anything until one day when Koosh came home from work. He was very excited and he said he had thought of the right name if it was to be a girl. "I was just driving over this hill and I thought of it, how about Melissa May?" That name was the most beautiful name I had ever heard! What a ring to it! Her initials would be MMM how could that not be 'good'? From that point on, I hoped for a girl just so that we could use that name. Although my due date was to be on our 3rd anniversary, Melissa May came a week early on a hot summer day. She was born before the epidural took effect which meant I knew what muscles to push which meant a speedier recovery. She was beautiful. And we were ecstatic!