Wednesday, March 09, 2011


I am sorry about the delay in postings. My mother is in a rehabilitation facility (physical therapy) and is having several medical issues that are not being addressed properly and without intervention, she could have died. We are still not where we need to be but I met with the Adminstrator today to resolve these. This is proving to be a lot on top of caring for Dear Son. This has been enormously stressful for me. I can honestly say that I have not been this stressed in years. I haven't been able to sleep this week since I have been sick with worry. As a general rule, I am not that type of person but when you know your mother is being neglected and suffering, it's really hard to function. My sister and I are working together on my mother's behalf, which makes it easier.
On a positive note, Dear Son continues to do well. He still has some bad seizures but overall is making some remarkable progress. This week, he was able to raise his chin up when I shaved under his chin. Each time I asked him to lift his chin up, he was able to do it. I was so proud of him and so excited! This has never happened before. In the past, I might ask him to do something and you could see he understood it and wanted to do it but it would take a little while for him to get his body working and then he may only be able to do part of what I asked. Now that he's taking the organic, virgin, coconut oil, he seems to be able to coordinate his mind/body better. I have increased his dose from 1 tsp to 1 tbsp/day and that seems to work better for him.
In addition to moving his chin up, he was able to move his hand out of the way the other day, prior to me lowering the bed rails. Typically, I have to move his hand out of the way, before I lower it. The other day, he moved it out of the way himself. This was huge! I can not explain why this necessarily is working so well for him but only that everything seems to be better. Please note, Dear Son stills sleeps a lot after school and it hasn't changed his diagnosis or anything but he definitely looks better, seems happier and is able to do more things than he has done in the last few years.

Wednesday, March 02, 2011

IEP(Individual Education Plans): What Should You Do When They No Longer Meet Goals

Today was Dear Son's IEP (Individual Education Plan) meeting. This is an annual event where the parents, staff (teacher, therapists, district) sit down together and go over progress during the past year and set new goals for the coming year. It can be an exciting time and a time to get involved in your child's education. In the early years, I would start a few weeks prior, creating what I thought were meaningful goals for Dear Son and working with the therapists to create goals that I thought would add real meaning to Dear Son's life. This means goals that would help Dear Son do what he wanted to do.
Over the past few years, Dear Son had numerous hospitalizations and has been diagnosed with a progressive neurological disease. During that time, it was a lot of work for him to be able to come to school at all and just make it through the day. Some days he would sleep at school but it was also good sometimes to get him up for the sake of his lungs, move him around and aspire to a somewhat normal life. During this time, it was also apparent that the old goals of putting Dear Son in a stander to help him get stronger and stand, were no longer "appropriate goals". From there, I had to shift the focus to more of a caretaker or caregiving goals. The staff wasn't quite sure what to make of this in the beginning, since they were used to more formal or traditional goals however as we go into the second year of these "caregiving goals", I think they are infinitely more comfortable with them. These caregiver goals were things that the doctors recommended that we do to keep Dear Son well. Instead of therapy goals, I like to call this, "Dear Son's Wellness Plan". This shifts boths the goals and the mindset to that of preserving health and wellness and doing things that help Dear Son maintain the health he has. For example, I have asked his school nurse to perform the following tasks when he goes to school:
  • Range of motion on his arms, legs and fingers to preserve mobility and to prevent contractures.
  • Massages his arms and feet with lotion while he is in his wheelchair; this prevents edema.
  • Listens to his lungs so I know if they are clear or if he is coming down with something.
  • Performs chest PT to help keep his lungs clear.
  • Go to the mat table for more chest PT.
  • Works on endurance for sitting. They allow him to sit up as long as possible and then move him to the mat table to lie down once he verbalizes it or simply after a set period of time.
  • Gives him 1/2 can of formula prior to coming home for lunch so he won't be hungry.

I have explained to the group that the two main priorities are: respiratory and leg massage. Since Dear Son can't clear his airway, it's important to perform chest pt daily. At home I use the nebulizer once a day and do chest pt and when he's at school, the nurse performs chest pt. The cardiologist at Big Academic Medical Center recommends leg and foot massage to keep the edema (swelling) down in his legs and feet. I do this daily at home and it makes a big difference. Massaging his feet and legs daily keep the swelling down. Even missing a day makes a difference since you can feel the hardness in his legs. In terms of his throat, when he started getting some congestion, I wasn't clear if it was due to his throat muscles deteriorating and if it was saliva or true congestion so I asked if they could listen to his lungs every day and let me know.

In addition to these things, he participates in the class for morning homeroom and morning exercises. He listens to music and is given sensory items on a tray that he likes to feel and which helps him move his hands. He enjoys things like rice or cooking and mixing things with his hands. These encourage movement. They also use a therapy ball with him and another student to help him continue to move his legs. I talked to them earlier this year about working on his legs and showed him some exercises I was doing with a therapy ball to help keep them moving and active. For a long time, this wasn't working at all, but now, after starting the coconut oil, he seems better able to move and function easier. For his hands, they also have him hold onto musical instruments which he enjoys. All of these things help Dear Son keep some use of his hands.

The school has also offered to help me with any of the tasks that I do at home. It is a lot of work caring for Dear Son 24/7, especially with the medication schedule and giving him medications every six hours as well as starting the early morning feedings plus repositioning him in his bed and turning him over every two hours. Today, we agreed that they would help with his arm splints at school, placing them on his hands/arms. I also asked them about helping me with his oral/motor therapy for speech therapy. Last year's speech therapist created a plan to help him relax his muscles so I could brush his tongue easier. By brushing his tongue and keeping the bacteria at bay, it helps keep him well.

Dear Son also has a bus aide that helps him on the bus. He makes sure that Dear Son has his hat/scarf on when he enters and exits the bus and that he gets on the bus quickly in the cold weather to lessen his exposure to the cold.

Overall, it was a good meeting. By getting everyone involved and having everyone help with his care, Dear Son benefits by getting all of his medical needs met by a variety of people, plus he has fun! His teacher is wonderful and patient. She had Dear Son a few years back so she knows what motivates him. His therapists are working with the nurse to help create meaningful tasks that help Dear Son stay well. They also incorporate his wellness plan into the classroom activities. For example, they talked today on how they do chest pt to the music when they have music therapy in class. This makes it a lot more fun that doing chest pt without music.

Perhaps the most surprising thing at the meeting today was that they told me that Dear Son enjoys sign language. The Social Worker has been introducing sign language to the class. Just words here and there but she hasn't put the words together for a sentence just yet. They say that Dear Son is fascinated with this. Dear Son does not have nor does he have any hearing issues and for all functional purposes, does not have use of his hands. I have to wonder though what he is thinking. I wonder if because he is non-verbal, that perhaps when everyone uses sign language, it may level the playing field. So not only can't he talk, but no one else can. I find it fascinating and wonder what he is thinking. I also love the fact that I found out something new that I didn't know about my lovely Dear Son. Don't you just love it when you find out things about your children that you didn't know?

Overall, it was a great meeting. I feel that Dear Son is getting the best possible care out of his education and that he is in a good spot. I can not emphasize enough how important these tasks are to helping him stay well and I am blessed to have so many people help him achieve these goals.

So in the end, the IEP can be just as valuable when your child has medical needs or has a progressive disease as when they don't. Shifting the focus from goals to wellness still has a positive impact on your child and also helps them be the best they can be. And ultimately, that's the goal of the IEP.

And finally, thank you to everyone for all of the wonderful comments on Dear Son's You Tube video, both on the blog and on Facebook. It was really nice.

Tuesday, March 01, 2011

Sunday Visitation with Mom

I walked out into the hallway, past the parade of wheelchairs filled with old, dying women and men, and into the lounge area. The nurse had come into my mother’s room to assist her with the bed pan so I took it as my cue to leave the room. I provide enough care to Dear Son at home and it’s hard to take on any more here. I walked into the lounge and sat at the table, turned off the t.v. that no one was watching, and looked through one of the magazines that had been sitting in the magazine rack. This particular therapy rehabilitation center was better than most, in my opinion, because the smell of urine didn’t permeate your pores when you entered the facility. The staff seemed friendly, nice and respectful of the patients that were there. I must say that even after a few visits to see my mother, I remain somewhat impressed with the facility, despite it’s outdated decorating. No one said a place has to be well decorated to be good but gosh, the shadowboxes of the straw hats with silk flowers around them really dated the place. So that’s where those awful decorated straw hats went.

It was Sunday and one of my two days off for the month. Dad takes Dear Son every other weekend, after he works a full twelve hour day on Saturday, so I get Saturday night, Sunday and then Monday morning to sleep in, sort of, or at least sleep in until I have to get up for work. I had slept in until 7 a.m. on Sunday and came to see my mother in the afternoon. Despite my limited time off, I was looking forward to the visit. No one knows better than me, just how long the days can be, when you are stuck in these facilities. I’ve done enough hospital visits with Dear Son to understand that horrible feeling, as if you are never going home.

What bothers me most about these places are the people in the wheelchairs that sit in the hallways. Most of them are sleeping and look like they are propped up in the chairs to die. I suspect that all of the therapy in the world won’t heal them because the emotional depression will kill them first. The lack of caring on the family members part, is evident in these expressionless bodies. It’s sad really. As I walk down the halls I was reminded of the physical therapy rehabilitation facility that Dear Son went to a few years ago. It was an adult facility that had a small children’s ward or group of rooms. The children’s rooms were located at the end of the hall off the main area. There were electronic codes to access the rooms so that the adult dementia patients or anyone else couldn’t access the children. I spent the whole time there with Dear Son as I normally do, but the part that bothered me the most was the walk down the hallway with all of the wheelchairs lined up. The old men and women littered the hallway so much so that there was barely any space between the chairs. As I would walk down the hall towards Dear Son’s room, a few of the men would yell out at me, trying to get my attention. It was a bit frightening I must say. I guess the first thing that came to my mind that it was more like a scene from , “One Flew Over the Cuckoo’s Nest” than anything else. In reality, these were nothing more than very lonely people, some with dementia I am sure ,but mostly, just lonely people that had been here a very long time. It bothered me that no one came to visit these people, but it bothered me even more that no one came to visit these kids. One of Dear Son’s former classmates was in the room next to ours and her mother never came to visit in the weeks we were there. I wrote about it here, a very long time ago.

This time though, it was Sunday. I was here to see my Mom and was sitting in the lounge. This place also does manicures for the patients and my Mom was the recipient of a manicure and dry shampoo the other day, both of which she loved. She raved about how nice her nails looked and how good her hair felt. As I waited in the lounge for the staff to help my mother with her “business”, I overheard another lady talking to her mother. The lady was mid sixties, I’d say, dressed very elegantly in black from head to toe. Her mother, some twenty plus years older, sat engaged, in a wheelchair. The lady was giving her Mom a manicure and talking to her as they went along. She was telling her Mom about the car she owned, a Jetta, and how she recently got a magazine from them on how to "jazz up" her Jetta. She explained that they had floor mats with the Jetta logo on them and how she wanted the Jetta sunglasses that she spied in the magazine. She went on to say that she showed her son the sunglasses when her son pointed out that they weren’t sunglasses but tailpipes for the Jetta that had white circles around them! With that, I let out a big laugh, since I just couldn’t help myself. After all, it was too funny. The women were cracking up as well and they delighted in the fact that I found it funny as well. At that moment I thought about the mother in the wheelchair and just how rich she was. She was rich because her daughter had taken time out of her day to spend with her. Not just talk to her but to laugh with her, have a real conversation with her and to pamper her. Yes, she was rich compared to the lady sitting outside the lounge area, just eight feet away, who moaned every three seconds and never stopped. Pain, perhaps. Most likely, just lonliness.

About that time, my ten minutes or so was up. That’s about the time it takes the staff and my Mom to do her “business” in the room so I returned. Sister and friend were there and the three of us talked some more keeping my Mom entertained. My sister had made a blanket for her, with cardinals on it, my Mom’s favorite bird. My Mom has been at the facility for nearly a week and every day my sister has come with new flowers for her. Orange tulips on day 2, yellow daffodils on day 3, yellow roses on day 4, pussy willows on day 5, etc. Sister and I had been splitting up the time with my Mom, making sure one of us could be there every day. We sat around talking, having some good laughs and overall trying to keep my mother’s spirits up. I knew only too well, that the time we spent there would not be long enough. After all, when you are in a hospital or any facility day after day, there is nothing you want more than a home cooked meal, to sleep in your own bed and to be in your own home.

After a few hours, I left the facility. As I walked down the hall, I saw the same people sitting along the walls. There weren’t as many in the hallway as there were at the other facility Dear Son was at a few years ago, but still, these were people who were forgotten. True, there were people in the rooms that just as lonely and bored, but the people in the hallway bothered me the most. Bothered me, because I knew that this goes on all over the country. As I waited for the elevator, I couldn’t help but wonder, “What the heck were people doing that they were too busy to visit?” I mean really? There isn’t any time in their day to visit their family? None? I try not to be judgmental but gosh, these are some pretty long days. Is this the best we can do for these people?

As I waited what seemed like an eternity for the elevator, I heard the staff member talking to the patients in the hallway. He was a chipper man doing his best to keep the spirits up at the facility. He was trying to get a response from a woman regarding whether or not she wanted a manicure. She said nothing and sat there motionless in her chair. In desperation, he gave her a choice: he said, "Would you rather be dumped in the river or have a manicure?" The ladies laughed at his good naturedness and I knew at that moment that he was worth every penny that they were paying him. The elevator door opened and with that I left. As I dropped off the visitor pass, I counted my blessings. With that, the wind hit my face and cold, damp air shocked me back into my own world. How blessed I was to be walking outdoors, to go home and have a home cooked meal, and to sleep in my own bed. Rich I’d say, yes, I am rich.
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