My Uncle-Brother: Living with a Special Needs Family Member

Tuesdays are usually my designated “clean the house” days. However, tonight (Monday) for some reason, I decided I wanted to clean the house. So, I did it early. While making everything look all nice and spiffy, I started to think about my writing and how it’s kind of like cleaning house for my brain. It allows me to clear out all those thoughts and ideas that just gather grey matter dust, and clutter my already cluttered mind. So, I think since I started this evening with cleaning the house, I’ll end it with cleaning my brain, before I sit and relax for a bit before bed.

First of all, I apologize for not writing much lately. I’ve actually been in a very doubting mood the past couple of weeks, which is why I only churned out one post in the last couple of weeks. I’ve actually started more than that, but ended up not finishing them, ‘cause I doubted that they were worth posting. I’m not sure why, but lately I just keep having those “oh this piece just sucks” kind of nights. I usually write at night, and each time I sit down to do so, I don’t finish what I start because I feel it’s awful.

So, with that said, I figured I’d talk about something that I began to write about last week, but trashed it. Hopefully, I don’t do the same to this one before I’m finished.
The thought passed through my mind again due to a recent photograph that I received. One of my dad’s cousins sent me a photo that she took of one of my uncles this past weekend. I’ll call my uncle Thomas. You see Thomas lives with us (me and my parents). Actually, he’s lived with them since before I was born. He is my dad’s baby brother and was born mentally disabled. He is now in his 50s, but his mind can range anywhere from a 50-something year old man, to a young child, depending on the day and situation.

I don’t know life without my uncle living with us. Unlike most uncles, I have been able to see and know him every day of my life. I don’t look at him as an uncle, which is hard for some in my family to understand. Most of my cousins call him “Uncle Thomas”, but I just call him “Thomas”. I see him as my brother… he’s my uncle-brother.

A Brief History

I guess I should give a brief history so you can understand how he came to live with my parents. When my dad was eleven years old, he lost his father. My dad is one of eleven children, and at the time of my grandpa’s passing, the eldest was eighteen, and the youngest (Thomas) wasn’t even born yet. My grandma was pregnant with him at the time of my grandpa’s passing. My grandma was a beautiful woman. I wish I could have met her, but sadly she passed away from stomach cancer before I was born. She was a strong woman. She endured the deaths of both her beloved husband, and then one of her sons in a car accident years later. She raised her children to be responsible and successful men and women in our society, and not a single one failed. They were poor and struggled during those years growing up, but each and every one made it. And, then after all of that, she herself fell ill to cancer. It’s such a cruel way for someone so loving, hardworking, and strong – and who already endured so much – to have to suffer in the end. She deserved so much better, and so many more years.

When she discovered that she wasn’t going to make it, my grandma asked my mom and dad to please take care of my uncle. He was difficult at the time and my dad was one of the only ones he listened well to. My grandma loved and adored my mom, and my mom felt the same about her. And, in the end, my mom and dad fulfilled my grandma’s wish. So, from the day that my uncle came to live with my parents to now, he has always been with them.

Growing Up with Thomas

As a child, I used to play with Thomas. We’d play board games, outdoor games, watch television and movies together, and so forth. He was my big brother. I loved that an adult wanted to play. I did not even know that there was anything different about him when I was very young. It wasn’t until I realized he didn’t know how to read that I knew something was different. I asked my mom why he didn’t know how to read, and she sat me down to explain.

To me, it wasn’t a big deal. I don’t mean that I think his disability wasn’t a big deal, but rather I didn’t look at him any differently. He was still my uncle, who lived with us and who liked to play. I had fun with him and that’s all that mattered to me.

By the time I hit my teens, I still hung out with Thomas at night. We’d watch our favorite television shows together. Then, the night came that he asked me the question. We were watching some television show that had an actor with Down Syndrome on that night’s episode. And, after one of the scenes with him in it, my uncle asked, “Summer, is he retarded?” I was so surprised by that question. I had never heard him ask that before. And, so I answered the question as best and understandably as I could at the time. He then responded, “Aw, poor guy.”

I have never forgotten that, and never will. I realized that night that my uncle did not know that he was disabled. He had no idea whatsoever. It was a learning experience for me, though. It taught me an even greater understanding for both my uncle and his disability. I learned that although he could see a difference in others, he could not see it in himself. To him, all was well.

It Can Be Difficult

Living with someone who has special needs can be a difficult situation at times. It can become downright stressful when things reach their worse. My uncle has caused his share of experiences, from the common midnight bouts of pounding the floor and walls trying to wake up the entire house (which he does), to purposely ignoring us when we talk to him. It’s obvious he can hear us, and he just pretends he cannot. It can be frustrating. And, unfortunately other family members just do not understand. My dad’s siblings only see Thomas at the occasional family gathering. The same goes for my cousins. They see a different person. He acts differently around them because he is excited to see them and he likes the attention he gets from them. They don’t hear him slamming doors. They don’t get the, “Move!” demand when he wants to get by. They get the, “Excuse me”. They don’t hear him trying to boss my mom around, or see him disrespect my dad. They get the “thank you”, “please”, and respectful and appreciative ways. And, they don’t have to deal with the common life issues, when it’s like pulling teeth to get him to properly do the most basic of life’s necessities.

As frustrating and outright angering as that is, though, it’s also a part of the understanding that must go along with his disability. My uncle has a carefree spirit. He does not have any worry whatsoever, unless it will negatively affect his ability to do what he wants to do. The perfect example of this is when a family member passes away. After the passing of one of my uncles (his eldest brother) a few years ago due to cancer, Thomas was quiet after he heard the news. But, he quickly perked up when he realized that a Valentine’s Day party was going to be held the following week at his special needs program that he attends daily. He was once again happy and hyper (he has a hyperactive disorder as well) as always.

He’s responded to the passing of relatives in the past by saying, “Well, we all got to go some time.” That was something that was finally fixed, as he started saying it to the closest of the deceased’s loved ones right after the passing. He rarely goes to funerals because he does not like them. They make him very nervous. The few times he has gone has been due to them landing on a weekend and there is nowhere for him to stay. He will laugh outside the church and act happy, until he sees everyone cry, then he will get sad too. But, it’s not a real sadness. It’s an “acted” sadness that will fade in an instant if someone happens to say something positive to him. He will jump into hyper mode.

This seemingly cold nature of his personality is not due to him being a cruel and horrible individual, but rather due to him lacking the properly working emotional receptors in his brain. He can feel and understand emotions to a degree, but he just doesn’t experience them the way the average person does.

It’s Not All Difficult, Though

While difficulty definitely comes with the territory of my uncle’s situation, some very wonderful memories have also come with it.

One of my most emotional memories with him was one day back in 2006. I was having such a bad day, and was extremely emotional. It was Valentine’s Day, and for some reason, that fact had left me feeling quite sad by the time I had gotten home that night. I had come home from school, and just wanted to cry. What I now know to be bipolar was already making my life miserable at the time, and the V-day celebrations just made me feel worse on that particular day. I just wanted to take a shower and go to sleep. I was putting my stuff down and unwinding, when suddenly I hear a knock on the doorway, and I turn to see my uncle standing there. He had a big smile on his face and he said, “Happy Valentine’s Day.” He then handed me a plastic red rose and Snickers candy bar that he had bought for me. Suddenly, that day – as bad as it had been – was ending on some kind of positive note… one that was informing me that I was loved. It was the innocence and loving aspect of it all that sent me into appreciative tears, and just made things not so bad at that moment.

So, through all of the good times and stressful times living with my uncle, would I change anything? No way! My uncle is more than just an uncle. He’s my brother and friend. I love him. He and I are kind of perfect balances really. His disability makes him extremely detached from emotional comprehension, while I am the complete opposite. I’m sensitive to everything that is going on around me. I’ve often wondered if there is some connection to my uncle’s disability and my bipolar. Bipolar is genetic. He’s not bipolar, but I can’t help but wonder if there is some sort of connection.

I would never trade my years being able to live with my uncle. I do not see his disability when I look at him. I know him in ways that other family members cannot. I know his ways, his moods, his mannerisms, and I can understand him in ways that other family cannot. I have a unique relationship with him that my other cousins do not have. He has watched me grow up, every single day, from newborn to adult. And, I have memories with him that will last forever.

I still have that red Valentine’s rose put away, safe and sound.


2 thoughts on “My Uncle-Brother: Living with a Special Needs Family Member

  1. Pingback: Her Name Was Cassie « My Bipolar Bubble

  2. Pingback: I Never Liked August « My Bipolar Bubble

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