- 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.