Autism-My brother Seth

For those of you who know me, I come from the "Pinegar Bunch". 3 boys and 3 girls. It was a long standing joke in the neighborhood in comparison to the Brady Bunch. That is, until Seth arrived.

Seth was a normal "annoying" little brother, or so I thought. He pulled my hair whenever I came near him, drooled all over the place, and needed a lot of mom's attention. He was developing like all of us did. He was starting to say "mama" and "dada". He was even starting to repeat after mom and dad when they would say the prayer for dinner. Then one day it all changed. It honestly seemed to change overnight.

Seth was about 2 1/2 and Mom had to have surgery. She was down for about 2 weeks and Seth was sent to my Aunt Carolyn's so Mom could heal. (it was a pretty serious surgery.) When Seth came back he no longer spoke. He no longer looked at us. He would not go to my mom. Seth was gone. It was as if the Seth we knew left and an entirely new person came and took over his body.

I remember feeling like I wanted to reach inside of my brother and grab a hold of Seth and where he was hiding. I wanted to reach in and pull him out. I knew he was somewhere deep inside that body of his. How does a person just disappear like that? As a sibling and a child it made no sense to me. I think of my mother. What a nightmare. What a nightmare for any mother. I know I felt like I lost my brother. She must have felt like she lost her son. I want to cry for all you mothers out there who have had to go through this. To have your baby developing so completely normal and then seemingly the very next day they just leave........and all you have is the shell of what they used to be, my heart, love, and adoration goes out to you.

I remember just wanting to scream at him. He would just stare at walls. I didn't understand it. Where was he? Why wasn't he looking at me? I was so frustrated. I was hurting and I didn't know why. He was there and yet I felt like I had lost my baby brother. Why was my mom teaching him things he already knows?

As I grew to understand it, the easier it was to accept. We all tried to accept that this was the new Seth. The new Seth was silent, did not speak, and spent a lot of time staring at things. Seth went to a special school. At this point in time, Autism was in its' infant stages and many did not understand it. Far too many children were being misdiagnosed or simply untreated. To tell someone your child had autism was like saying you suffer from "ambiguous loss". Few understood the entire meaning of the word. But like most things, you would be surprised how many people you know suffer from it. (Just like autism today). There is so much more awareness about autism. People understand it more, and the treatments are so much better.

As time went by, we were fortunate enough that Seth started to respond very well to treatments. Seth began to talk. (People with severe autism sometimes never talk their entire lives.) As Seth began to talk he also, like any child struggling to communicate, would get frustrated.

Seth had a temper. I remember one day in particular, Seth and I got in an argument. Seth loves Video games, books, and TV. He has a great educated opinion. He does not like it if you disagree with him. He is better now. Back then, he was not. I did not like one of his movies that he was in love with at the time. I did not think this would get a huge reaction, but it did. Seth reached into the silverware drawer and pulled out a long, sharp, knife. "AH!!!" I thought. RUN.  And I ran. I ran so fast that I could have beat anyone, anywhere. I was running for my life. He was fast. He was ready to kill me, (figuratively). I ran and had just enough time to get to the bathroom. The only room with a lock on it. I got in and quickly turned to lock the door. As I slammed the door I saw Seth's face. He was furious. I hurried and locked it. My heart was racing. Seth was pounding on the door but it didn't matter. I was safe.

I would not come out for 4 hours. That was when mom would be home. That was when it would be safe to come out. Rule #1-Never make Seth angry.

There would be a lot of scary moments like that. Seth was unpredictable. But--autism gets a bad reputation because of a lot of things on the news. Seth and most other autistic children like him are like any other disabled person. They need help like everyone else. Everyone is unique and one case does not define an entire kind of mentally handicapped people.

In Autism, it is known if a boy has autism, it can range from mild to severe. If a girl has Autism it is usually pretty severe. With Seth we have been very lucky. Seth, in his early years, didn't talk at all. My mother is a first grade teacher. She used that to her advantage and taught Seth relentlessly. She bought special programs and books to help him learn better and faster. Thanks to my mother, Seth is able to communicate to the outside world. You can talk to him and have a normal conversation with him, (for a little bit. Then you must talk about Greek mythology) He is a master in Greek mythology. He knows everything about it. It is fascinating to talk to him.

As a family we have talked about it and have figured Seth's mind has developed and relates best to those that are about fourteen to sixteen years old. In terms of video games and books. He tries to relate to children but simply cannot. He does not understand them. There have been numerous times he has felt threatened by them. In his mind, Seth has told me, that my 6 year old boy Chase scares him. When Chase has tried to play with his Uncle Seth and "Wrestle", Seth will feel threatened. He says he feels Chase could beat him up. He says he feels the need to fight back. And he has fought back. If we are not careful a real fight will happen. Seth honestly feels like my 6 year old is attacking him and could really hurt him. (Seth is gigantic in comparison to chase.) Relating to children has always been a challenge for Seth. He simply does not like kids. He tries. It is cute to see him try to be a "good uncle".

Seth is what you would call someone with "high functioning" autism. He is very smart and his memory is ridiculous. He can quote an entire movie word for word if he wanted to from beginning to end. (without making a mistake.) If I were to recommend a movie it would be "Rain Man" with Tom Cruise and Dustin Hoffman. A classic. If you haven't seen that, you've got problems.....kidding. But it's good. It's about an Autistic Savant. Which is basically someone who is autistic and is a prodigy or genius at something. Dustin Hoffman happens to be good with numbers. That movie reminds me a lot of Seth. I think Seth is that way with video games. That boy should get paid to play video games, he's that good.

There is a lot of speculation on how Autism is caused. I can say I'm a little stumped too. There has been speculation about food allergies (gluten), infections, problems at birth. I want to say it's genetics. I'm a nurse, (LPN), and I'm not buying into the whole immunization thing. I'm pro immunizations. The metal alloy they claimed caused Autism has been taken out of all immunizations. So that should cause some mothers some peace of mind. Now, even though I am pro immunizations, since I have a brother with autism, I was pretty freaked out. I spaced those immunizations out at 2 1/2 years old and watched my kids really carefully. I didn't do them all together. I was so bugged with myself. Because I truly don't believe immunizations cause Autism. But, what mother wants to risk it??? So for all you mothers out there who struggle with the deciding on immunizations, I get it. But---We do live in a great country and are so lucky to have these things available to us. People around the world die from so many preventable diseases. When there was an outbreak of smallpox in Utah I thought we should take more advantage of the great country we live in. We shouldn't count on others to do it for us. But----again, just my opinion. No judging here. I understand the other side of the argument as well. I understand everyone is just trying to do what they think is right for their child. 

I you were to ask my mother, she would say she knew something was wrong with Seth from the very beginning. At first they thought it was muscular dystrophy, and that went on for 2 1/2 years until Autism stuck.

A lot of Autism I have noticed,  is connection. They have a hard time connecting to this world. Most of the time, in the early years with, Seth he was in his own little world. A world you just wanted to yank him out of. A world you just wanted to be a part of. I would find myself wondering how someone could stay silent that long, or stare so steadily and reverently.  My mother said she would notice my brother not maintaining eye contact, even as a tiny infant. She stated that it surprised her that he would not respond to her coo's. By 12 month's he was not babbling. One really big sign was that he would always line up his toys in a straight perfect line. ALWAYS. These are all huge signs of Autism.

As time passed, Seth became the life of the party. Since Seth was so hard to "discipline", if he wore anything we were lucky. When I was in high school, Seth was about 13. I was never embarrassed about anything, so it never occurred to me that it might be awkward for anyone else to see my brother dressed the way he dressed back then.

Seth would go to school and when he got home, he immediately stripped down into nothing but his whitey tighties. At this particular time, I was home. I had brought my 3 girlfriends home with me and we were talking and laughing in the front room. Seth bursts into the front door and begins to strip. (I think nothing of it). I have seen this a million times. This is like you seeing your mother walk up the stairs. I continue with the conversation as if nothing was happening. All my friends did was stare. They could not believe what they were seeing. Seth is a tall and big guy. Not fat, just big. He was 13 then. He was not A "little" boy. Whitey tighties were really snug around this boy. He was even starting to grow chest hair. My friends start to go red. I finally stop what I am saying. I am so confused as to why they are staring at my brother. "oh yeah" I thought. "Seth, you can't strip here. There are girls here." Seth stops and thinks, "Oh. Oh yeah. Ok sis. Sorry sis. I'll be downstairs sis." Then he comes over to me and gives me a big hug. I am sitting in between all of my friends. Seth is just in his whitey tighties. I am laughing so hard. He turns and leaves. "Man! I love my brother!" I think. He just made my day. All 3 of my friends were officially and totally uncomfortable!!! I was loving every second of it! After awhile, we were all laughing. I love how innocent everything is with him. It is so refreshing.

I think of all those mothers who are raising handicapped children. I think of how hard it is. I know my mother cries sometimes at night because she had and has hopes and dreams for Seth's future. Some of the things she wishes for him may never happen. A wife, a college education, a full time job. But--Some of those dreams she wishes may come true. As mothers we hope only for the best for our children. I have to say, to all those who are struggling to raise a handicapped child, how much I admire and respect you. The difference you are making in your child's life is one that will not be forgotten. I truly believe they are sent down to bless our lives. I was just a sister to a brother with Autism. He has taught me so much.

In the beginning I said I felt like I lost my baby brother. But I didn't. I got Seth. I lost nothing. I gained  
Seth. Life would not be the same without him. I have been taught what it means to be truly patient by him. He taught me to laugh and not care what people think. He taught me not to judge people on the outside. He taught me to look deep inside and see what is in people's heart. He makes me see the bigger picture. We have been so blessed to have him in our family.

To all you mothers out there with your special little babies, you are so amazing! I'm so grateful for all you do. Seth is now 21 years old and looking back, I cannot believe that all the times I thought I was trying to help teach him something, he was actually the one teaching me! Thank you, my cute baby brother.