A couple of years ago, my husband and I were "encouraging" S to do more and more for himself. He felt we were just nagging him. We tried explaining to him that we were asking him to do things that other teens were doing for themselves, and he needed to do these things in preparation of living on his own someday.
To give him a visual of what we were trying to accomplish, we made a chart that we call "The Four Pillars of Life". They represent physical, educational, financial, and spiritual skills that we feel he needs in his life to start out on his own. This list is created for him based upon his needs. We have a similar list for J, but it has skills that are pertinent to his needs.
a. Getting ready in a timely fashion: Whether it is his CP or ADD or a combination of the two, S can take up to 2 hours to get ready in the morning. That is not a reasonable amount of time especially when we know he can get ready in 45 minutes if he puts his mind to it. Still working on this step.
b. Setting time aside to stretch: Stretching is critical for S. He needs to do it every day, at least once a day if not twice, especially since he has been exited from PT. Some weeks he is better than others about doing this. He knows it helps him. Still working on this step.
c. Physical activity: S needs to be active just like we all do. He enjoys doing Wii Boxing. He also likes to be in the water. He rides horse during the school year (it's too hot in the summer). He enjoys adaptive snow skiing. We have tried doing Pilates and yoga stretching. The yoga is easier for him than Pilates. Still working on this step (aren't we all?).
d. Create a Stretching playlist: We told him to create a playlist to listen to while he stretches. He knows that after 4-5 songs he should be done stretching. He loves listening to music! DONE!!
e. Eat correctly: S is very good about eating foods that are healthy for him. One issue he has is that he will "forget" to eat if he is playing on the computer, listening to music, watching History programs, etc. In the past, he would skip meals because his Concerta suppressed his appetite. In the past few years, we started a split dosage of his Concerta, and it helped with his eating. We are still working on eating at reasonable times (it's a teen thing). Still working on this step.
f. Water intake: S knows he needs to drink water to help keep his body healthy; however, we are working with him to drink it throughout the day. He has been known to go the whole day without drinking water and having minimal other liquids during the day. When it is time for bed, he wants to have all of his water intake at that point. We have tried telling him that he is not a camel. He is getting better. Helpful tools for this include the 24 oz. Tervis Tumbler with a handle. He can carry this with his crutches. The Tervis Tumbler water bottle with the screw-on top is also good. He can hook his finger through it or stick it in his bag. Still working on this step.
g. Posture: This is a work in progress, and it is an uphill battle. Because of his CP and his scoliosis, good posture is difficult but not impossible. It is important for him to stand tall and be upright in the correct position because, if he doesn't, it will cause a number of problems for him later in life that will require surgery to correct. Trying to prevent that! Still working on this step.
h. Taking care of personal needs: This is an area that he has mastered. He's not always fast, but he can take care of all of his needs. DONE!!
i. Tie your shoes: We have found a way around this by using Hickies on his shoes. DONE!!
j. Organization: This may never be accomplished. His ADD mind does not lend itself to organization (http://www.additudemag.com/slideshow/36/slide-9.html). It is because he has ADD that he needs to be organized. What we have realized is that the techniques my husband and I use are probably not helpful to him at all. We have been spending a lot of time telling him what works for us, asking him if he thinks that would work for him, and asking what he thinks would be helpful. Again, he has very creative thinking and thinks outside of the box, so he has the ability to think up ideas that we won't come up with. It just needs to be functional for him - whatever that might be (http://www.additudemag.com/adhd/article/729.html). Still working on this step.
k. Use personal bag: This has come a long way. He knows his bag needs to be an extension of his body. He is good about using his bag approximately 90% of the time. We will call this step DONE!!
l. Getting around correctly: For S, this means knowing when it is appropriate to use one crutch or two crutches. He is good about knowing when it is appropriate to use his wheelchair. It also means walking correctly and being safe while walking with his crutches. This has greatly improved over the past couple of years. DONE!!
m. Core exercises: A strong core is the key to S being able to support his body correctly. Again, this is important to be working on since he is no longer in PT. Some days/weeks are better than others about working on these exercises. Still working on this step.
n. Shower faster: He can take FOREVER in the shower! Because of his ADD, S has no concept of time (http://www.additudemag.com/slideshow/36/slide-12.html). When he thinks he's been in the shower for 10 minutes, it could easily be an hour. We keep telling him he needs to rent a place that has water included in the rent. Enough said. Still working on this step.
o. Cooking: He has come a long way since we set up the Four Pillars. We had him back in OT last year to work on some of his ADLs to include cooking. He can microwave, cook in his toaster oven safely, and he can use the stove. DONE!!
p. Shop for self: This is still a major work in progress. The most frequent response we get from S is "It's easier if you go." It is easier; however, it is not helpful to him. We have told him that his college roommate is NOT going to go to the store for him to buy food, deodorant, soap, underwear, etc. This is related to the organization skill in knowing that you are running low on something, and you need to make a list. Shopping trips will need to be planned in advance and transportation arranged since he will not drive. There is an added level of difficulty in shopping because of his physical disability - getting things off of the shelves, getting heavy items, transporting purchases, asking for help. He is a fan of online clothes shopping. Whatever works! Still working on this step.
q. Schedule own appointments: We are working on this, and it is coming along. The difficult part is the military medical system doesn't really want to talk to "children" when it is time to schedule appointments. A facility that has online scheduling would be great for him. We do make him go to the counter at the clinic to schedule his own appointments, and he verifies with me that the time works. DARS deals with him directly which is nice. Still working on this step.
r. Keeping a calendar: He is working on this, and he knows the importance of this. Google calendar is his friend. He knows which tools to use to be helpful. We are working to get him to understand the importance of using a calendar once he is in college to record due dates and study times. This school year I will be using a syllabus format and due dates with him, so he can practice recording dates and planning ahead. He will also be taking an online course, so he will have to be accountable to that instructor. Still working on this.
s. Transportation: At this point in S's life, driving is not in his future. His mode of transportation has been mom and dad. We have told him that this will not be his transportation plan forever. He knows that when he is finished with college he will need to live in a community that has some form of accessible transportation for him (we have traveled to major cities in the US that have "accessible" transportation that isn't the most user friendly). Where we live now, he can apply for HandiRide. He needs to work on his application for that this year, so transportation is in place for college. He needs to take transportation options into account when he looks at 4 year colleges. Still working on this.
There are a lot of skills in this category, and there are a lot that he is still working on. Growing up and functioning in life is an ongoing process. There isn't a single category that he isn't working on at this point. When we initially brought this up to him, he told us, "That is too much to do at one time. I will work on one thing at a time." Life doesn't work that way. We are handed more than one thing at a time. The fact that we are working on multiple steps is great progress.
The other pillars of life will follow in additional posts. Until then, you know where to find me - on the couch with chocolate!
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