Thursday, April 13, 2017

Special Needs

This week I seem to be learning a lot about institutions and how they work. Or don't work, as the case may be. Earlier in the week I was dealing with my Dad being in the hospital. Today, it was my nephew and the school system. My nephew has special needs. While he has not been formally diagnosed with Autism, he is definitely somewhere on the Autism spectrum, which qualifies him as a "special needs" student.

I have written before about how my nephew does not like school. He just can't seem to get comfortable or find his natural rhythm there. The classroom is too loud and overstimulating, so he has a hard time concentrating. And just like the hospital, the school has a litany of rigid rules that do not allow much room for interpretation. The principal seems to think that with enough structure and discipline, he can force kids like my nephew to conform, but it just doesn't work that way.

Today I got a call from my sister around lunch time asking if I could pick up my nephew at school. She was about to go into a meeting and the school called to say that my nephew had an incident in his classroom and was being sent home. This has been happening more often over the past month. As the end of the school year approaches, I think my nephew is tired of being in school and the school administration is losing patience with him.

Today's incident seems to revolve around a bag of Doritos. All of the kids were told that they could bring a healthy snack to eat in class. My nephew went to his lunch bag and got some Doritos. The teacher explained to him that this was not considered a 'healthy snack' and told him that he could not eat his Doritos.

I should mention that my nephew is a very picky eater. There are only a few things he will eat. Doritos, BBQ baked lays, microwave popcorn, cheese pizza (but only certain brands), french fries with ketchup and a few other types of cookies and crackers. From this teacher's perspective, none of the things my nephew eats would be considered healthy. And yet, he has to eat something.

Apparently, my nephew was not happy about her taking his Doritos away. There was some sort of altercation in which they say that he 'hit' the teacher. I wasn't there, so I am not sure exactly how it happened, but according to the school rules if anyone hits a teacher under any circumstance, they have to be removed from school for the day.

Of course, it is not ok that he hit a teacher, even if it was unintentional and occurred in the heat of the moment. My nephew has to learn to control his emotions. But as I consider the overall situation, it seems to me that there were a lot of opportunities on the school's part to do things differently.

I am not a parent, but I spend a lot of time around kids. One of the most important lessons I have learned is to pick your battles. I would think that a professional educator would have the same ability to discern what is important from what is not important. The teacher's number one objective should be to keep my nephew in the classroom learning. While healthy snack time is a fun diversion for the class, it is not impacting his education in a meaningful way. If eating a bag of Doritos will keep my nephew in the classroom, then just let him eat the Doritos.

I also question the overall validity of the 'healthy snack' exercise. Instead of the teacher arbitrarily deciding what is healthy and what is not, why not let the kids learn about it for themselves? She could have asked each kid to bring in their snack and then brought out a chart with the recommended fat and sugar content to help them decide whether their snack is healthy. It seems like that would empower the kids to do some research and make healthy choices instead of just listening to whatever the adult in the room tells them to do.

Anyway, I got to the school to pick him up and we went out to my car. As soon as he left that building, I could feel his energy shift. It was the same thing I saw happen to my Dad when he got out of the hospital. My nephew was out of jail for the day. He was free of all the school rules and regulations. Free to explore. Free to follow his curiosity. Free to be himself.

I told him that we needed to go to the grocery store to get three things on the way to my Mom's house and then I showed him the list. He read the three items from my pink post it, trying to commit them to memory. Then he started reading every sign that we passed along the way. There was a sign on a church that said "Easter mass. All are welcome." I wish I could say the same about his school.

The sign must have reminded him that Easter is coming up, because then he told me that tomorrow is Good Friday. He told me that Jesus died on Good Friday but then he came back to life on Easter Sunday. He said that he hid a cross in his pocket and he will take it out on Sunday when Jesus comes back to life. He went through every detail that he learned during family night at church yesterday. It sounds like they went from room to room gathering symbols and hearing a different part of the Easter story in each room.

It is clear that my nephew is very smart and capable of learning. He just needs the right environment. Some people learn from reading and others learn from doing. I think that lot of kids would benefit from different types of learning in school, not just my nephew.

We got to the grocery store and took our list in with us. My nephew wanted to get each item in the order it was written on the list. That is definitely a quality of many kids on the Autism spectrum. They like to do things in order and can be upset when things are out of order, even if it is just a sequence that they have invented in their own mind. So, we got bananas first, then cream cheese and finally, the bagels. My nephew stopped to read all of the signs in the store and held my hand as he guided me to whatever areas he was interested in. I wasn't in a huge hurry, so I just patiently waited and let him take the lead.

His mind works like a computer. Taking in new information from his environment and processing it in real time. At the same time, there seem to be a lot of background processes that are constantly running. If I ask him a question, I always wait a few minutes for him to answer. It takes time for his mind to finish processing whatever it is working on before he can get to my question. Sometimes, after a long pause, he will answer me. Other times the computer in his brain seems to just "time out" and the answer never comes. My question gets lost in a tidal wave of other inputs competing for his attention.

We finally pulled up at my parents house. My Dad was sitting on the couch when we walked in. The first thing my nephew said was "Hi Grandpa, I am so glad you are home from the hospital." Then he put away his backpack and headed into the other room.

They say that kids on the Autism spectrum sometimes have a hard time feeling empathy or showing compassion, yet my nephew knew exactly what to say to my Dad. It is all in there, it just comes out in its own way. You can't force anything with him. But that is the beauty of it. Whatever he says is 100% authentic.

I have no idea what is going to happen when he gets back to school tomorrow. Or how my sister is going to find a way to navigate him through the rest of his education. There are so many challenges with the school system. Just like the healthcare system, it is an institution designed around conformity to standards. Standards in terms of what kids have to learn and how they must learn it. But my nephew and so many other kids like him just don't seem to fit. They need something more. Something different.

The school system labels kids as "special needs" because their needs are special. But I think they are looking at it all wrong. The kids are the ones who are special. I wish the schools would stop trying to manage special needs kids and start finding ways to support special kids' needs.

Monday, April 10, 2017

There is no 'Health' in Healthcare

My Dad is in the hospital again. Being there with him over the last few days reminds me of all the reasons I left my job in the healthcare system. I’ve said this many times in my career, but I’ll say it again. A hospital is the last place you want to be if you are sick.

Despite their marketing claims to be a place of healing, in my experience, hospitals are only worried about two things: getting paid and getting sued. And the majority of decisions and policies made within hospitals are based on those two primary concerns.

Even though they want you to feel like you are getting personalized care, the reality is that hospitals are institutions, just like schools and prisons. And like any institution, they have created an elaborate web of rules and protocols that sacrifice the rights of individuals under the pretense of protecting their health and safety.

I understand that it is hard to manage all the potential risks in such a large facility. And to account for the fact that everyone does not view the world in the same way. People can do crazy things sometimes. But when you are a normal person like my Dad, who is just trying to get better and go home, the hospital can be a very frustrating and stressful place. And that is not the type of environment that promotes healing.

Through my yoga background and my experience dealing with my own health issues, I have learned so many tools for connecting with my body and giving it what it needs to be healthy. I try to take the time to notice how I am feeling and respond with activities that complement, rather than fight against, whatever I am experiencing. If I am starting to get a headache, I will drink some water and have a snack before I reach for the Motrin. If I am feeling overwhelmed or anxious, I will stop and take a walk instead of ‘powering through’ whatever I am trying to get done.

Unfortunately, that is not the philosophy of the modern day hospital. Here is what I have seen so far with my Dad:
  • There is no holistic view of his health. Each doctor only focuses on their specialty and their issue. The cardiologist looks at his heart. The urologist looks at his bladder and kidneys. They do not seem to recognize or acknowledge that these systems are related. 
  • There is a pill for everything. As soon as my Dad shows any new symptom, the doctors come in and tell us which medicine they are going to give him to fix it. They never discuss any natural or alternative remedies that could help his body heal on its own. They just want him to stay on the medicine, and then they don’t have to worry about actually practicing medicine.
  • No one seems to be concerned about the underlying cause of his symptoms. When we ask why certain things are happening, like when he developed an erratic heartbeat, no one can explain it to us. They just want him to take more medicine. But the medicine just masks the symptom or replaces the body’s natural process with some sort of synthetic substitute. It doesn’t heal his body or help his body to function better. 
  • The doctors are not proactive. Everyone seems to treat what is right in front of them without thinking about the consequences. If the treatment causes something else down the road, they will deal with that later. My Dad was labeled as a “fall risk” so they won't let him get out of bed. But if he is bedridden for four days, he is likely to get weaker and possibly develop pneumonia or fluid in his lungs. Instead of preventing this by letting him walk with supervision each day, they force him sit there in bed until “Oh, surprise!” Now he has pneumonia and they can treat it (with medicine of course.)
There are so many things wrong with the healthcare system. It is overwhelming to think about. I have been aware of all of these problems for years, but watching my Dad go through this and knowing there is nothing I can do to help him has left me feeling tired and frustrated. I just want my Dad to get better. And I want him to have a positive experience in the hospital while his body is trying to heal.

Luckily, there have been a few doctors and nurses who have been helpful to my Mom and Dad. They are the rare exceptions who take time to explain things and communicate with each other to try and put together the whole picture. But the way the system is set up, it is not easy.

If I could redesign the modern hospital, I would create a holistic center for wellness. In addition to offering medical treatments, it would focus on natural and alternative therapies. Every person would have a device in their room to look up treatments and their side effects and talk about them with the provider. The provider would have to go through the list all of the health issues the person has, and they would be required to discuss how the issues might be related. Prescribing medicine would be the last resort, instead of the first line of defense.

There would be healing patios located throughout the facility and windows in each room that would open to allow fresh air in. Every person would have a chance to go outside at least once a day and feel the air on their skin. And if they are too sick to leave the room, the staff could open up the windows for them. There would be diffusers with essential oils as well, to provide healing benefits and a pleasant scent for the room.

The food would be made to order and come from fresh ingredients grown locally. There would be a kitchen on each floor with a cook designated to make the meals for that floor, instead of trying to make everything downstairs in the cafeteria and keep it warm on a tray. When possible, people might even walk down to the kitchen for their meals instead of eating on a tray in their room. It would all depend on how they are feeling that day.

And people would be able to wear their own pajamas instead of a scratchy green hospital gown. I could go on and on inventing the perfect healing retreat for people like my Dad. But it only exists in my mind. And maybe in a celebrity rehab center somewhere outside of L.A. For real people, there is no such place for healing.

Even with all the literature that shows how all of these things can promote healing, hospitals are not making meaningful changes in the way they deliver care. Their idea of providing a healing environment is to put pictures of waterfalls and flowers on the elevator doors so patients can see them when they are being wheeled around on their cart. While that is a nice idea, it does not really get to the root cause of the problem.

You might wonder why hospitals don’t do any of the things I suggested in my ideal holistic center for wellness. From my perspective, it all comes down to the two things that motivate hospitals: getting paid and getting sued. Even if the hospital’s customer experience department wanted to open up a healing patio or allow fresh air into the rooms, the hospital lawyers would quickly shut that down. What if someone trips on a patio stone? What if a bumble bee flies in the open window and stings a patient and they are allergic to bees? These are the types of conversations that stop anything creative or innovative from happening in the hospital.

Then there is the issue of payment. It would take more staff to transport all of the patients to and from the healing patio, and the insurance company isn’t going to pay for that. The same is true for the kitchen on every floor. It is much cheaper to have a central kitchen and use the lowest quality food possible to meet the minimum requirements. Hospitals are in business to make money, even the non-profit ones. And they are not going to do more than they are legally required to do.

It feels so strange to write a blog that has such a negative tone. It is not who I am, and it is not how I want to spend my energy. But today, I can’t help it. It’s just how I feel.

I wish my Dad wasn’t sick. I wish he didn’t feel like he was locked up in a prison for the last four days while he’s been in the hospital. I wish the healthcare system worked better for him, and for all of the other people who are sick. I wish I didn’t know so much about the healthcare system. I wish I could speak up and do something to change it, but I know that I can’t.

My Dad is being discharged tomorrow. When he gets home, he can put on his favorite pajamas. And I can make him a delicious healthy dinner. And then we will sit outside on the front porch swing, so he can feel the fresh air on his skin.