The Do’s and Don’t of Caregiving: Lessons Learned

There’s no doubt about it, caregiving can be hard work. News stories like this just make me angry. Leaving patients unattended, without food, water or meds or not keeping them clean is unacceptable. And leaving them like that for weeks or months and causing their death is unconscionable. Stories like that, just reinforce my decision to take good care of Dear Son. I don’t ever want him to suffer in any way. There is great peace in knowing that you take good care of someone and great rewards as well.

Beneath that hard work though, are some wonderful benefits. In order to be successful, you have to put yourself in the patient’s shoes, set a standard of care and decide on your goals. By this I mean, you have to imagine what it’s like as if you were the patient. No one wants to sit in a wet bed or not have clean sheets on the bed. You have to feed them like you would feed yourself, at regular intervals and healthy food. Setting a standard of care means deciding what is an acceptable level of care. Do you want to give adequate care or do you want to give great care? Adequate care is meeting the basics, giving meds, meals and keeping them clean. Think of a hospital. They meet the basics by giving meds within certain parameters, giving them meals and keeping them changed. What they don’t do very well, is doing this with any sense of urgency. This is not a put down but a fact; it’s the result of having too many patients and not enough staff. I know because I stay there. I won’t ever let Dear Son stay in the hospital without myself or Dad there 24/7. It’s not an option. When I had back issues and needed the staff to change Dear Son’s diaper, the wait times could be staggering. More often than not, the average wait time was thirty minutes. Dear Son was older and required more than one person so they had to wait until two or three people were available. A long wait was about an hour. Thankfully, I stayed with Dear Son and am able to change his diaper, give meds and get his food at regular intervals so he’s not hungry. I try to do things in a timely manner, so he doesn’t have to wait. I create rules so that I give meds within a certain amount of time every day, not just some days. As he is able to do less, I have to do more.

The joys of caregiving are many. It’s a good feeling to take care of someone you love. It’s good to know that you keep them healthy, you keep them warm, you keep them fed and clean. It’s rewarding when you do it with love. The best part is when you make them feel like a million bucks by making it fun. Making them smile, making them happy or just knowing that you got their meds on time so they wouldn’t suffer or have seizures is huge. Yes, you can hire out the tasks but what you can always be guaranteed is that they will do the tasks the way you would want it done. There are some good caregivers but also some average ones.

Many years ago, I had to make a choice. As Dear Son’s medical needs changed, the amount and times of the medication increased. For a while, twice a day meds, or every twelve hours was fine. Soon it went to three times a day and then four times a day. Around the time of those changes, I was working a full time corporate job. My job had just ended, along with several hundred others and I was actively pursing full time employment, as a divorced single mother. Finding child care was a nightmare since most daycares wouldn’t take severely disabled children. I soon found a job in another city. I turned that down because trying to move to a new city and find care would be challenging. As I pursued full time employment, I soon learned that in order to work, I’d have to have some nursing care in the home. I had been fortunate in my previous full time job, that I was fairly close to work but my new options would require a drive of an hour or more. While I could hire this out, I’d have to be sure that they would show up. They’d have to feed him breakfast, get his meds and get him off to school. Same at dinner time. As I thought about it, I would need someone to give him all three meals (nurses for breakfast and dinner and school nurse for lunch). In addition, even if this worked out, what happened when they didn’t show up? Or what happened if they didn’t feed him or give him his meds? You could never be sure.

Over time, I slowly realized what I could live with and what I could not. It was not going to be o.k. to farm out all of his meals and caretaking to other people. I just couldn’t be stressed out worrying that he wouldn’t be fed or that he didn’t get his meds. He was too important to me to do that. So I made the decision to take care of him and work part time. This meant a drastic pay cut. It was not an easy decision and it took a while. There were many times when I longed to be working full time and have a career, have better healthcare and have all of the things that came with. My sense of worth was challenged. It was quite humbling as well. I had defined myself for so long by what I did and now, well, what I did, didn’t seem very important to anyone but Dear Son. When I made sacrifices, some people just didn’t understand. How do you explain the fact that you didn’t have back surgery because you were taking care of a child who was disabled and needed you more? Along with it, came tremendous sacrifices to do that. I went from driving a new luxury car to an older, used car. I went from wearing designer clothes to wearing my clothes until they wore out. I went from having a closet full of shoes to wearing shoes for longer periods of time. But that’s just material things. I gained more time. More time to learn how to cook. More time to learn new things. Years later, I started a business. While I love it, I can't work as much as I'd like since I care for Dear Son. It hasn’t all been bad though, just different. I would also say that I am pretty happy right now although I still miss working full time. My passion for fashion and nice things never waned and I still love them today but my priorities are different. I like to think that they are just simmering on the back burner for now, ready to take center stage at a later chapter in my life.

A lot of people say they want the best for their children. What they really mean is that they want the best for their children, providing they don’t have to give up a lot or do a lot of things differently. When faced with the level of care Dear Son required, I had to give up a lot. While I realized that in caring for Dear Son I was putting everything on the line, it was the only decision I could really live with. This way, I knew that I could give him the love and care he needed. He wouldn’t be hungry but he would be well fed. He’d get his seizure meds on time. He would be changed when needed and be kept clean. All of this comes with costs. Caregivers health often take a beating when they care for their loved ones. It’s hard to take care of yourself when you are up a lot at night. If you have ever cared for a sick family member you know what it’s like. The first day, you’ll do anything for them. The second day it’s getting old and the third day, well, they had better be feeling better so the can get whatever they need themselves. For caregivers, there aren’t any vacations. Those med times roll around pretty quick after a while.

But caregiving is very rewarding. Along the way, I’ve learned some things that I can do to make it easier:

1) If you want to take great care of them, you also have to take good care of yourself. Pick something you do that makes you feel good. For me, that is my nails.
2) Get your energy from the foods you eat. When you are consistently sleep deprived, it is very exhausting. Since a full night’s sleep without interruption is something I only get twice a month, I had to have a Plan B. You have to eat foods that give you energy. This means fruits and vegetables. Vegetables provide the most energy and I try to eat high quality, organic vegetables as much as possible. When you eat well, your energy levels increase tenfold.
3) Try to get some exercise. Dear Son loves to go for a walk. We typically walked eight months of the year, from March to November, most days of the week. I can’t walk as much now since I need a knee replacement but we do try to get out.
4) Get in touch with nature. We have a trail near the golf course that runs along the river. The river is spectacular and we always see a lot of different birds and animals along the way. The change of seasons brings out different flowering trees and just seasonal changes in general. It always inspiring. Even simple things, like opening the window in the bedroom to hear the rain is wonderful. There is nothing Dear Son loves more than when I open the window in the morning and he can hear the birdies singing.
5) Create routines and follow them. I have daily and weekly routines. You have to. When you are tired, you just follow the routine and everything will get done. The great part is that if you are sick, someone can pick up and take over.
6) Have an emergency sheet, a medication sheet and a plan. You have to have an emergency sheet that lists all of the important information on the patients, including diagnosis, medications and what they can and can not do at baseline (meaning when they are healthy). You also need to have a medication sheet with all of the medications and doses listed for each hour of the day. This is critical. I keep this sheet on the refrigerator with a magnet and take it off and use it each time I give meds. That way, I don’t make a mistake. It’s easy to make mistakes when you are tired, even if you give the same meds every day. I give twelve different meds administered in varying amounts, every six hours.
7) Ask for help and/or accept help. This is by far the hardest part. Dear Son’s Dad and I have different tasks that we do to care for Dear Son. We each do different tasks and we respect the job the other one has done. While I do the bulk of the caregiving, Dear Son’s Dad takes him regularly so I can get some sleep. You have to work together. What’s harder is accepting help from others. I almost never do that but it’s something I need to work on.
8) Enjoy life. Life doesn’t have to stop when you take care of someone you love. It’s actually part of a good life. Learn to enjoy life regardless of people’s disabilities. There are ways to do it, it just might be a little different than what you are used to. Take the time to make things beautiful for you and for them. Make a beautiful tablescape for your lunch. It’s the little things that go a long way.
9) Know when to stop. As Dear Son’s disease has progressed, he’s not able to do as much as he once did. You have to learn to accept that but also to adjust life in general. I can’t expect him to go to school like he once did or do as many things as he could before. He just doesn’t have the energy.
10) Go with the flow. This is huge and not always very easy. There are times when I have my day planned: get him off to school, do my morning cleaning tasks, workout, get dressed and then off to work. That’s what is supposed to happen. Sometimes, he’d have a seizure or the bus would be late due to snow or school would be called off. You can not be stressed over this or you will get sick. You have to go with the flow.
11) Be flexible. Early on, I learned that I couldn’t do everything the way I used to. For example, before Dear Son was born, I used to exercise at a gym and loved it. Once he came along, I realized I didn’t have the time to hire a babysitter, travel to and from the gym and then exercise. I didn’t want to leave him and it just didn’t work time wise. It took me a long time before I realized that I could get my workout in other ways-by taking him for long walks or exercising at home. It sounds simple but sometimes we get so caught up in doing things a certain way, that we think it’s the only way we can do it.
12) Allow more time. I have routines in place to get him off to school in the morning. I have time built in for each task so that if something unexpected comes up whether it’s a seizure or that he went to bathroom after he was all dressed and in his wheelchair, I can take the time to take care of the issue and not be stressed. You can’t have everything timed out to the minute with these kids. For example, I allow one hour and fifteen minutes to get him off to school in the morning. I allow fifteen minutes for me to put in my contacts, unload the dishwasher, open the blinds, etc,. fifteen minutes to get and administer meds, fifteen minutes to get him dressed, fifteen minutes to get him transferred with the hoyer lift and into his chair and fifteen minutes to brush his teeth, wash his face and general grooming. Each task doesn’t take fifteen minutes, but allowing myself this amount of time helps me feel less stress if something goes awry.
13) Embrace your goals and know your values. I firmly believe that we need to take care of those less fortunate than ourselves. I think that caring for those with disabilities is critical and that they should have the same rights as everyone else-the right to a bathroom in a public place, the same rights as all of your other children, etc. My pet peeve is when families put a disabled child in a home, because they couldn’t care for them and keep the able bodied kids at home. Why does the disabled child draw the short end of the stick when it comes to keeping them at home? Because they were more work? No. We need to make it a priority as a society to make it easier to keep kids at home by having daycare so parents can work. Believing that these kids deserve the best helps guide me in my everyday caregiving with my Dear Son. I want to show him how much he is loved, every day. I also want to break down the barriers and help give people answers to make caring for the patients at home, easier.
14) Know your chapter in life. Understand and appreciate where you are at and enjoy it. Before we went on Dear Son’s Make a Wish trip, I decided it would be the best trip ever. I figured it would be the last time he would be well enough to do anything. It might be the last time for family photos, etc. As a result, I was determined to have nothing but great memories from our trip. And we did! I also know that when Dear Son’s time comes, that I can look back at this chapter in my life and know that it was a wonderful ride. His disabilities didn’t define me any more than they defined him. Instead, it was the highlight of my life. I expect that when he dies, I will have a few chapters of mourning and then some good chapters after that. He will always be with me though and never forgotten.

And finally, the biggest thing for me is living without regrets. Not only does it feel good to give him good care, to love him and to see him happy but it’s a great feeling to know that when I am old, that I can look back on this time and know that I gave him everything I had. I will have no regrets. It’s what I live for. That and Dear Son’s beautiful smile. As a mother, you never get tired of seeing your children happy.

The Value of a Gift~A Father's Day Story

Dear Son as a baby.

The first few years were tough. Taking care of Dear Son was challenging because everything we did was so new. At ten weeks old, he made his first trip to Big Academic Medical Center. He would be there for three weeks, while they diagnosed and attempted to get the seizures under some control. While we were there, they started Dear Son on ACTH therapy which required daily injections of the steroid into his thigh. I don’t remember how often we needed to do it, but I did know that I wasn’t the one to give the injections. As you know by now, I have a weak stomach. Dad was there, and his steady hands were the ones to administer the dose. It was a mess too, because the home health company had delivered adult needles and the needles were bigger than Dear Son’s thigh. We were new to all of this and it was different getting supplies delivered to your door with a newborn; this was eighteen years ago so medical care and everything was quite different than it is today. Once that was resolved, Dad would give the doses every day.

As the months and years unfolded, Dear Son’s disabilities became more apparent. While we certainly knew some of the things to expect, one of the biggest challenges was always the physical one. Everything seemed really hard. It was hard to feed him, hard to lift him, hard to get him dressed. On top of that, I couldn’t help but wonder all of the time, why us. We were normal, healthy parents with a love for health and fitness.

Back then, Dad lifted weights and competed in power lifting and body building contests. In his twenties, he won a contest at a sports event for being the strongest man there. During intermission, they had a contest that involved lifting cases of beer in glass bottles. Whoever could lift the most, won the beer. They stacked the cases on top of each other. Dad won after lifting eighteen full cases of beers. He wasn’t much of a drinker so he gave the beer to his friends.

Dad won first place in this bodybuilding contest in his twenties.

While he was winning a lot of powerlifting contests, he started winning bodybuilding contests and for as long as I can remember, he wanted to be a professional body builder. I remember too days at the gym where he squatted 700 pounds free weights; the bar was bent and there wasn’t any way to get any more plates on the bar and still have the pin in place to hold them. Dad would wrap his knees to keep them from blowing out and I would always cringe and look the other way.

Dad's thighs in his fifties.

He still has some powerful thighs today although a little smoother looking than his ripped days.

Over the years, I began to understand what a blessing that was. Those powerful muscles were no longer just for the gym but to lift and carry Dear Son. I remember when Dear Son hit twenty pounds and wasn’t walking. I thought, “Wow, this is hard.” As other mothers children went from crawling to walking, Dear Son still wasn’t rolling over. I was having to lift him and he was so heavy. It wasn’t just the weight, but it was dead weight since he didn’t have any tone. When he hit forty pounds, I thought, “Wow, this is heavy.” I kept comparing how hard it was to other parents and normal children. They didn’t have to lift their kids. It was hard not to compare everything to other parents but that is all we saw. The neighborhood was full of normal kids and Dear Son was the only disabled one. Through it all though, Dad was there to lift Dear Son.

When Dear Son was ten, I stopped giving Dear Son his baths. By then, Dear Son was growing taller. He was still quite thin and at the 10% percentile for his height. Dad did all of the lifting and by that time, I was growing more thankful for all of those big muscles. He was now in charge of giving the baths and transferring Dear Son to the tub*.

A few years back, when Dear Son hit the 170 pound mark, I was struggling to lift him. I had back surgery to correct some longstanding issues and they also discovered I had three herniated disks from lifting Dear Son. After that, I began using the hoyer lift but I was still unable to get Dear Son in and out of the car.

Soon, Dad began to take over that job too. Now that Dear Son is 185 pounds, he continues to do all of the lifting, where Dear Son is concerned. I know now more than ever that we couldn’t do it without him. Dad goes along on every medical visit and every admission to the hospital. Without a wheelchair van, there really isn’t any other way.

Photo of a father carrying his disabled child out of the pool at Give Kids the World.

I remember too, being on Dear Son’s Make a Wish trip, seeing the value of fathers. As we sat at the pool, I would see the fathers carry their disabled children in and out of the water, due to the lack of water wheelchairs.

Water wheelchair.

I remember thinking how lucky those children were to have such strong fathers and how no one else could fill that need.

Photo of Dear Son

It was also good to see other parents in the same situation as we were. I grew to recognize the tired faces of the parents and to see that we weren’t alone in our struggle to care for these beautiful children.

Photo of Dear Son at home.

Dad’s value certainly goes far beyond the muscles but now I understand. I understand the reason for those muscles. Those muscles are a gift and there is no better way to use a gift than using it on someone you love. That gift, is what allows Dear Son to be well taken care of, to get his baths and to be able to be moved around instead of having to stay in one place. It allows Dear Son to get to a place so he can receive good medical care and it allows Dear Son to have some fun. Dad’s muscles were not given to win contests, but rather to give love to a child that needed it the most. Happy Father's Day, Dad. I am sure if Dear Son could hug you, he would.


*I now have a hyrdrolic bath lift to raise and lower Dear Son into the tub but Dad still needs to transition him into the seat and back out of the tub. Living in an apartment doesn’t allow for me to make alterations to install a track in the ceiling which would make that job easier.

Note: Dear Son is eighteen years old and suffers from intractable seizures, dystonia and severe mental retardation as a result of a random mutation of the ARX gene. In addition, he suffers from a progressive neurological disease.

Dear Son's Make a Wish Trip~Day 7~Last Day!

Saturday, May 22, 2010~Day 7~Leaving Orlando!

Last pic at the villa before leaving for the airport!

At last, our trip was almost over. We had a great week and by now, Dear Son was really beginning to enjoy everything. Checkout time was 11 a.m. and our plane wasn't leaving until after 3 p.m. so we had plenty of time to kill. We stopped by the Gingerbread House for one last breakfast. After that, we checked out and headed over to the lobby.

Dear Son is really enjoying himself here! He seems genuinely happy and it's great to see him smile!

More pics from the lobby...

Dream Mom and Dear Son. I can't believe he's really 18!

After a while, I fed Dear Son lunch in the lobby and then Dad and Dear Son headed over to the ice cream parlor for one final visit. Give Kids the World was great because they notified us earlier in the week that they called and set up someone at security for us at the airport. Griff from Vacation Mobility met us at the airport for the van drop off. What a great rental service for people with disabilities! Unfortunately, once we got to the airport, security was unaware of our escort however they made a few calls and within minutes they had a TSA there to escort us through security. I requested a visual inspection since I was worried about Dear Son's VNS being activated. Supposedly, according to the manufacturer, you are o.k. at the airport however they request that you stay some 10-15 feet away from the scanners. I opted for the visual for him. The airport was totally swamped so Dear Son's visual inspection took quite a while. They were extremely thorough and checked his back, socks, etc. It took around fifteen minutes. I could not believe the great service we got though at both airports. Each time, we were escorted right through security and never waited in any lines. That was really appreciated.

Dear Son at the airport.

Finally, we boarded the plane. As you may recall, Dear Son was pretty scared when the plane started moving around for takeoff however after I explained to him that "men" really like flying and that the pilot was going to step on the gas and go really fast, he loved it. For the return flight, he was really happy once we got on the plane and couldn't wait to take off! You can see him smiling with excitement now!

Here he is smiling as we prepare for take off!

On our way home!

One we arrived at the airport, we had to wait around forty minutes or so for United to get the aisle wheelchair for Dear Son. Another couple had to wait for one as well for their disabled child. United needs a better policy so they can deliver the aisle wheelchairs in a reasonable amount of time. Disabled people shouldn't have to wait until everyone has left the plane and the new staff arriving before getting them a wheelchair. When tickets are ordered, there should be a box on-line for you to check so that they can have the chair available. One of the flight attendants for the next flight recognized Dear Son from our trip to Orlando and decided to give him some "wings". She pinned the wings on his t-shirt. He seemed to enjoy it.From there, it was onto Windy City Limousines. They have executive busses that are handicapped accessible. We were the only passengers both times. The bus was only a week or so old.
Arriving home (O.K. I might have used the departure photo when we left, lol!) Overall, a really great trip. We couldn't have picked a better place for Dear Son's trip. When I asked for suggestions, most of you suggested Give Kids the World at Disney and you were right on the mark. It was so easy for us. Everything was totally accessible. Give Kids went out of their way to do everything they could to make it easy. They set up the TSA at the airport. At Disney, everything we did was accessible and easy. The passes allowed us to go on rides without any wait times. This was especially great for Dear Son since he didn't have a lot of energy and often was exhausted after a few hours. Our wheelchair van was like icing on the cake. It took our trip to a whole different level in terms of making it easier. It wasn't just easy getting around but having the van meant we could leave when it was best for Dear Son and come home when he needed to leave. I know it was certainly Dad's favorite thing since he didn't have to do any lifting. Dear Son is getting to be a pretty big guy at 180 pounds to lift into the car.

After arriving home, Dad made a picture CD and movies for school so Dear Son could show his classmates his trip. His teacher had stated that everyone was so excited to hear about it since a lot of times, not much happens in these kids lives and this time, it was not only big news but good news. The kids loved the movies and one of his classmates was laughing the whole afternoon. They said it was the perfect end of school day.

Now that we've been home a while, we still spend time talking about the trip. Dear Son loves to talk about it and see pictures from the trip. He watches the Barney Show that Dad taped from our trip, on his t.v. He seems to almost enjoy the trip as much now as he did when we took it. It's just a little easier for him now to take everything in because he can enjoy it lying down in his bed or sitting in his chair.

His favorite thing from his trip seems to be the Mickey Mouse they gave him. Each day, GKTW left presents in the room for the kids. The first day was a Mickey Mouse and a large shopping bag full of presents. He continued to get presents every day and there were so many by the end of the week, that we couldn't take them all home. I took the ones that were age appropriate and that I thought he would enjoy and left the toys for able bodied kids there. He smiles every time he sees Mickey Mouse and he sleeps with him every night. Ever since the H1N1 last November, he seems to like these stuffed animals. They seem to provide a sense of security for him. I've never seen him like that before so it's definitely different. As for the Barney pillow, I put that between his ankles to support his legs/feet at night to prevent bedsores. In the last month, the addition of the pillow seems to have helped the swelling in his leg go down.

In the end, we had a great trip and a lot of great memories. Next month, when he goes to summer school, I make a scrapbook of the trip. In the meantime, it helps to pass the time thinking about the good times. Give Kids the World has a policy where any time you are in the area, you can come and spend the day there (providing you have other accomodations). I told Dear Son we might go back next year to visit and he just smiles. It's nice having something to look forward to.

In hindsight, I think this trip would have been more enjoyable for him two years ago, when he could do more and wasn't so exhausted. I say that because if you have a child and have the opportunity to take a trip like this, you should do it while they are well enough to enjoy it. I mentioned this to a friend of mine and she thought that it was the perfect time for Dear Son since this is when he seemed to need it most. After thinking about it some more, I think she is exactly right. Sometimes, we need all need a vacation just to get away and think about something different. In Dear Son's case, I think our timing was perfect. He seems so much happier now and although he's still tired, I can always get a smile by showing him Mickey Mouse, showing him pictures or just plain talking about our trip. And after everything he's been through, I am thrilled he has some great memories.

Delay

Sorry for the delay in posting. Dear Son has been having some seizures lately and is requiring more hands on care. It's also been difficult too since he has been out of school for a few weeks now and I don't get any breaks. I should get back to posting in a day or so. Thank you for checking in on us.

Dear Son's Make a Wish Trip-Day 6-Epcot

Friday, May 21, 2010~Day 6

We decided to start the day with more character photos. Barney was scheduled to be here this morning and Dear Son was very excited to see him again. By now, Dear Son was starting to enjoy the vacation and had a better idea of what was going to happen. Sometimes, it takes kids like this a few times to see something before you can tell they are really enjoying it. After Dear Son's breakfast, we walked over to the Castle of Miracles to see him. Every Friday, they have different characters visit.

We were greeted instead by Scooby Doo! Apparently, Barney was there last week so it must have been a typo. Anyway, it was fun nonetheless. I don't think Dear Son really knows who Scooby Doo is though whereas he definitely knew Mickey and Minnie Mouse along with Goofy. One of his favorite movies when he was younger was, "A Very Goofy Movie". They used to watch it at school and said he would laugh like crazy when he watched it.

More photos...

It was great getting the character photos done here, at Give Kids the World, since it was easier for kids like Dear Son than standing out at Disney and waiting in line. It was great everything was so easy.

After the character photos, we headed over to the Gingerbread House for breakfast. This was the first time all week we came as a family. Dear Son eats via a feeding tube so it doesn't feel right to take him to a restaurant and let him watch everyone else eat so we usually just fed him at home and then came separately to breakfast and dinner.

More photos of Dear Son at the Gingerbread House. This place is packed for breakfast!

After breakfast, we headed over to Epcot. It was hard to believe the week was almost over. It went really fast.

I thought the flowers were spectacular here.

It was a beautiful day however it was still very, very hot. One of the things I wanted from this trip was family photos. I am not photogenic and never would take any family photos. When Dear Son's condition deteriorated, I realized that I didn't have any photos of our family or of Dear Son and I. I always took tons of photos of him. I tried to take some family photos so I could look back and remember how he looked. I realized that one day he will be gone and I wouldn't have any photos of our family. I won't get a second chance so I decided to not worry so much and just take the photos.
Hopefully, I won't bore you with the flowers. I just love them.

Dad and Dear Son...

The first thing we wanted to do was to go on the ride, "Soarin'". This was one of your suggestions; I remember someone said it was the, "best ride, ever!" We were really looking forward to it. This was a big attraction and there was a forty minute wait.

Give Kids the World gave us these passes so that we wouldn't have to wait in line. We showed the pass and they whisked us up through the disabled entrance and to these special lines for wheelchair access. We probably didn't wait more than five minutes in line.

They asked that we transfer Dear Son to the seats. Dad transferred him and then they took Dear Son's wheelchair. What's great is that they had the entire procedure down for people with disabilities. They offered to help Dad get him in the seat. Once Dear Son was seated, they told us he could ride two or three times if he liked, just let them know once we were done with the ride and they wouldn't make him get off the ride. Here's Dear Son checking everything out.

All ready to go!

They took the wheelchairs over to the center of the aisle. They kept them near the ride and told us they would bring them to us when the ride was over. They had plenty of people working there and it seemed like they were each assigned to help certain disabled patrons or whoever needed help.

The ride was a lot of fun! It took us over many scenic routes! All virtual reality of course, but really fun. Here's one of the scenes. I took a picture while we were on the ride so you could see. It was too dark for some of the other pictures to come out plus it was really fast.

After the ride was over, we rode again and then they brought the wheelchair over to Dear Son and offered to help us get him back into the chair. They couldn't have been more helpful.

Next, we decided to check out this ride called, "The Seas with Nemo and Friends".

It was a wheelchair accessible ride and the wheelchair pulled up right into the clamobile. It was nice to have a few things indoors where there was air conditioning. With Dear Son's patch, we had to make sure he didn't overheat so this worked out great.

Once inside, we took to the "seas". It was very pretty and almost as colorful as the movie.

Next, we stopped to give Dear Son his lunch.

After that, we took a little boat ride. They had an exhibit called, "Living with the Land" or something to that effect. EPCOT, is actually the acronym for, "Experimental Prototype Community of Tomorrow". EPCOT was originally designed to be a futuristic model with a community based on a type of utopian communal living. Once you get that, the rest makes some sense. The ride takes you through different ecosystems around the world. The idea is that our natural resources will be depleted over time and that we need to begin looking at alternative farming methods; all of this is branded under the name of "sustainability". Essentially, they show you futuristic methods such as soiless agrilculture where instead of using soil, they use just water and nutrients to grow plants (they state that the soil is unnecessary since it's just a reservoir for nutrients), of course it's artificial nutrients. They also showcase other ideas such as vertical farming where plants are stacked on top of each other in these planters creating an efficient method of watering. (See below photo for vertical farming.)

What I didn't like about the exhibit was that there wasn't any mention of genetic modification. Of course, these plants are genetically modified to produce higher yields and to be grown without soil, etc. I don't care for genetically modified foods and will avoid them as much as possible. I also want to know when an item is genetically modified. To go through this exhibit and listen to the entire tour without any mention of genetically modified fruits, vegetables or plants didn't seem right, although I was certainly not surprised.

Papayas...

Fluted pumpkins...

Cotton...

Bell peppers...

I should mention that Epcot also has a fireworks show every evening, complete with fireworks, lasers and music however Dear Son wouldn't be able to handle that. He goes to sleep at dinner time and doesn't get up until the next day.

All in all, a really great day. We did a few other things and then after Epcot, we decided to head home, rest a bit and then headed back to the pool. It was hard to believe we would be going home tomorrow! We wanted to make sure to enjoy that pool once last time. Have I told you how much we enjoyed the pool, lol!