Autism

Sheerly not cut out for it

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I really suck at cutting hair. I could use the left handed excuse of having to learn how to cut with my right hand, but I don’t even think that would cut it. I didn’t always think that I sucked at it. As a teen, I got sick of my autistic brother constantly pulling my hair. It hurt. I noticed that my younger brothers didn’t get their hair pulled, probably because it was too short to pull. Just my mom and I got our long hair pulled. I got really sick of it so one day I took a scissors in my right hand and hacked off around 6 inches of long tresses and lot of stress. People commented. They liked my new hair cut. I thought that I wasn’t terribly bad at it.

Then I got married and had kids. My oldest daughter needed her bangs trimmed as a toddler and I was on it. I cut her bangs, but they were crooked. So I kept cutting until they were straight and about a quarter of an inch long. I didn’t really suck. She wasn’t sitting still. People commented. Ah, your daughter decided to cut her own hair. Poor thing. She wasn’t talking too much yet, so I didn’t argue that I was the one who hacked her hair. It wasn’t too long after that when she started to cut her own hair. She was better at it then I was.

Then my husband got the idea of buying a hair cutting kit to shave some money. He liked to cut his hair short so it really wasn’t that complicated. I could almost handle that. I decided to take on bigger things, my dad’s hair. First, let me tell you that he looks exactly like Santa Claus. He has a humongous stomach, everything else is flat. He has long gray hair with an equally long beard that children could try to yank off and find it to be real. He has the glasses that he looks over, worn on the lower part of his nose. He would be a perfect Santa Claus in appearance. He would just have to work on being jolly. He would have to smile and tolerate little children. He would have to give them candy instead of hiding it to eat himself. Darn, it would have been so perfect otherwise.

I made the mistake of offering to cut my dad’s hair. This is a job that my mom always did, but for some reason didn’t have time for. At one point in her life, my mom wanted to be a hairdresser. During her senior year, the high school had a career day. They brought in someone that worked with the disabled doing what she does now. That person probably never knew that by telling high school kids about his career changed my mother’s whole career and life path. I don’t see her being happy as a beautician. She loves her career and finds it very fulfilling.

The day came for my dad’s hair cut. He came over to my house. I realized quickly that I was in a little too deep. My dad’s hair was long. My husband’s hair was short. I decided to buzz my dad’s hair using the longest setting. It really wasn’t going very well. As I was buzzing the back of my dad’s head, the guard came off. I gave him a very noticeable bald spot down the back of his head. Thankfully, he just laughed the whole thing off. After that incident, things such as scissors and hair cutting kits mysteriously vanished from my house. My mom made time to cut my dad’s hair. My husband stopped complaining about $20 hair cuts.

I realized that cutting hair was sheerly not my thing.

The dark unfeeling cardboard box

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When I was a young child, I never really liked school a lot. Sure, there were some bad teachers, some good, and some everywhere in between. But it really wasn’t that. It was never that. It had more to do with Matt, my autistic brother. Being less than 2 years younger than me, I could never get away. The school really didn’t know what to do with Matt. He was the first autistic child to come through the school district. When he couldn’t function in a regular classroom, they cut the library in half to make it a special ed room.

For a long period of time, Matt was nonverbal. Oh, he did scream and cry but he did not talk. He was uncontrollable. His teacher at school set up a naughty box for him between the library and special ed room. Almost every time we had library, my brother was in the box screaming and flailing around. The box seemed high at the time because I was so little. When my class lined up to look at books, the kids could peer into the box. Most of the time the kids laughed and I hated them. I put my feelings in a big box that seemed even bigger than the box that Matt was in. Many times I would rather be trapped in that empty box devoid of feelings, life, and light than to face the pain of the real world.

For a long time I floated around in my own little world. How could I make friends with my classmates? How could I like the kids that called my brother a retard? I went deeper and deeper into that box. I stopped eating. I didn’t talk to anyone. I started failing my classes. The only thing that touched my heart was music. I had this focal point that I would always stare at so I didn’t start crying in that class. I was so lost. My mom was very concerned, she had the school counselor talk to me. She was a wonderful person who tried to help me make friends and talk about feelings.

My mom wasn’t in much better shape herself. Mother daughter outings with the extended family ended up with my mom sharing with the family how much she hated autism and all of the things that Matt did or didn’t do. The family just wanted relaxation and fun. They were uncomfortable that my mom was crying and needed their support. They stared at me all the time. When I was alone with family, they peppered me with questions about if my mom was ok and how was Matt. I didn’t feel like anyone cared about me. Most of the time they were just trying to help without being very helpful.

One day Matt started talking again. He told stories of how his teacher in the grade school was abusive towards him. She shoved him under her desk and sat down at her desk squeezing him in there. He also said that the teacher would place him face down on the floor and sit on him making it hard to breathe. My mom asked me if this could be true, she was very upset.

After everything that happened, my mom tried to keep my younger brothers sheltered from going to school with Matt. She sent my brothers to parochial schools and schools that were out of our district. I wonder if that had anything to do with me not responding well to being in school with Matt. Did I save my younger brothers some pain? I hope so.

Running away

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I thought that after how hectic last week was that this week would be a breeze. Boy was I wrong! This week has been just as stressful if not more so. I left off with recent events telling about my brother’s wedding, coming back home and getting a cold, and ended Monday with the news that a best friend of my son’s ran away from home. Things would’ve probably ended up fine if he would have came home later the night he left, but he did not. 

My son and his friend Logan were the last ones to see Jake. Jake bragged on the bus ride home Monday night that he was going to run away from home. His friends didn’t believe him because he said that before several times and never did until Monday. Monday night our summer days reached an end. A cold front brought the wind and rain. Logan saw Jake walking down the road in the pouring rain with a backpack on. Logan called my son and they attempted to stop Jake from running away. He had a backpack full of clothing, water, food, and a couple knives. He told the boys he was going to catch a train out of town. The boys tried to stop him, but he ran off into a corn field. 

At this point, the boys went over to Jake’s house to alert his mother. Jake was born to teen parents who ended up marrying other people and having other children. He was having a lot of conflict with his stepdad. His father lives out of the state. I thought Jake would come home that night. 

Tuesday morning arrived, but Jake had not. His dad flew in to help try to find him. The neighborhood was scoured. Abandoned buildings, deer stands, unlocked sheds, farms, the railroad tracks, the park, fields, and woods were searched with no signs of Jake’s whereabouts. After school, my son and a group of boys looked for him in their secret hiding spots. I offered to search the corn field where he was last seen. All I found was a battery and an empty sleeping pill wrapper on the ground. The corn was over my head and I was searching after dusk. I heard noises out in the field and was convinced there was a bear coming for me. It was scary. When it got dark, we all met back by the road. A night bird cried out. Jake’s mother mournfully responded by shouting out Jake’s name. He was not there. 

We went back to Jake’s house where the boys were questioned some more. Jake’s stepdad was pouring over Google maps and also was looking over the railroad track locations. Jake’s grandmother cried. No one had slept the night before, no one had eaten. There were tears, anxiety, and anger. It was heart wrenching to see the family’s pain. They were so desperate trying everything with no answers. We decided to search outside of a trailer of a friend of the boys that recently moved out that had a broken window. Jake’s dad cried out his name in anguish receiving nothing but empty silence. After this, I took the boys home. It was going to be a cold night, near the freezing point with a boy who ran away a day ago into the pouring rain. We feared hypothermia. We feared death. 

Last night Facebook got flooded with missing person posters. Jake was spotted near a highway about 30 miles away. This morning brought relief that up until last night, Jake was alive! A couple of hours later, Jake was found. 

All of this brought back memories of the times that my autistic brother Matt ran away from home as a child. Multiple times he ran away. At times we had a search for him in the woods near our house. We feared for his safety. He couldn’t take care of himself. It brought back brief moments of the terror we went through searching for a lost child. 

Lately I have seen a lot of banter going back and forth about who has the hardest job as a parent. I want to offer my opinion. Parenting is hard! It doesn’t matter if you are a biological parent, a step parent, a foster parent, a parent of one or ten, or a parent of the disabled. If you want to be a good parent, it is difficult. It takes everything that you have. I think that parents who have both disabled and “normal” kids probably have one of the toughest roads to walk. We need to work together to bring our lost children back home. I am not sure what will happen with Jake now, but I feel a lot of relief that he made it home safe.

Scabies and other things that bug me

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My autistic brother Matt has been in a group home for about 5 years now. Begrudgingly, my mother decided that it was better for her to choose a home of her liking versus having us do it after she is gone. It was something that my parents put off doing until Matt was in his mid 30’s and they were their 60’s. It wasn’t an easy adjustment, but it was mainly good. Well, except for the scabies. That’s right, one of the care providers brought scabies to the house. This ended up resulting in my brother getting scabies which he needed 3 pesticide treatments for. He had a major allergic reaction to the treatments which caused his hands to blister, peel, bleed, ooze in a red angry rash. My brother went around looking like he had a flesh eating virus for the past 6 months. The care provider refused to seek treatment and kept spreading it to this group of people again and again until they were forced to let her go. My brother is starting to finally get better. It was something so disgustingly horrible that I find hard to describe without pictures. You wouldn’t want to see them anyway. 

In response to all of this, my mother did some extreme allergy testing. This resulted in some extreme responses while we were up north this last weekend. First of all, the sun revolves around Matt. Remember me saying that last time up north when it was very hot Matt was angry because he couldn’t sleep? He wanted all of the fans off so my mom turned them off. So what? Who cares if he is angry? What, is he going to hurt our children like he hurt us? About the diet, my mom was going to wash off the grill after we made hamburgers just in case there was something in the seasoning that Matt was allergic too. That is too extreme. When he comes to my house he brings his own hand towel because he may be allergic to my detergent. That is too extreme. He also brings his own soap. That is too extreme. Matt is allergic to one kind of sugar and not another, but the canned food label only says sugar. Perhaps we should call the company and ask what kind of sugar they use. That is too extreme. He can no longer have baked beans because he is allergic to the pork now. 

Mark and Carla decided to have a pig roast for their wedding in 2 weeks. Matt now can’t eat what they are serving. My parents asked if they could stay at  Carla’s house for the wedding because of the special diet and linens that needed to be used for Matt.  Carla said that she didn’t have anywhere else to get ready, to put on her dress. Emily passed on a word of advice to Carla that apparently I gave her, to set boundaries. Emily said that my mom asked her to ask what kind of butter was in the mashed potatoes on her wedding day. Emily is right, the bride has too many other things she has to worry about. Mom asked Mark if Matt would be the best man at the wedding. Mark just said that in passing a couple weeks ago because he hates being the center of attention. Tensions are high, no one is ready. 

Recently, my brother Luke and I have been discussing taking our families on vacation this winter. I told Luke that mom might want to bring Matt along. He said absolutely not. I agree. I’m sorry, I can’t live like this anymore. If we decide this week to fly down to Florida, either my brother or I will have to be the bad guy. We love our mother and Matt, but this extreme favoritism just brings resentment from the rest of us. We have our own problems with our own kids. I don’t think that scrubbing down the grill is going to make a difference. I know mom needs to feel like she has some control. 

I am sorry, I feel very angry today. I realize that parenting a forever child is difficult for the parents, but guess what? It is hard for the siblings as well. We spent our whole lives dealing with all of this crap. Just because you are martyrs doesn’t mean that we don’t struggle. I’m sorry to be so edgy, some bad things happened today that I can’t talk about now. I will probably be able to talk more about it tomorrow. 

Control freak!!

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If I was the world’s most articulate writer, I think I would still miserably fail to communicate to you the world of chaos that I grew up in. I didn’t have any control over my environment. We would often try to go somewhere and end up going nowhere at all. At times, I felt like I had no control over myself, my emotions. I certainly had no control over whether or not my autistic brother Matt decided to inflict pain on my body. What may have been even worse was seeing Matt inflict pain upon others; friends, family members, or complete strangers. That may have been harder then being hurt myself. It was hard to place hatred upon my brother when he didn’t seem to have any control either.

I decided that I needed control and structure in my life. I became a control freak. I was not going to allow anything or anyone to control my life. I certainly was not going to allow addiction or vices of any sort control me. But then a couple of weeks ago, I realized I was wrong. I was allowing control to control my life. Then I realized that everything I am afraid of has to do with a lack of control. 

I thought I was afraid of heights. Being on an airplane freaks me out. But I don’t mind looking out the window. It is the hours of turbulence, grasping the sides on the seat in panic that got me to seek help. I felt trapped in a tight area. A person that I didn’t know had control of my life. You say that flying is safe compared to driving. Yes, I agree, that is why I was terrified of driving too. Several years back I was afraid of driving, especially over bridges and on highways. It got so bad that at one point any driving on the highway would bring about a panic attack. It wasn’t long before I realized that my biggest fear is total lack of control. There was nowhere I could pull over on a bridge or a busy highway. The big concrete partitions locked me in. Trapped. I refused to stop driving. It has been almost 2 years since I panicked while driving. I was driving through construction. There was nowhere to pull over. I started to sweat profusely. I opened all the windows. The music from the radio unnerved me. The tunnel vision started, darkness creeping in until I thought I would pass out. I slowed down, driving erratically. My heart beating fast. I always pulled off the highway at the next exit feeling like a total failure bracing myself to face it again, feeling exhausted. I refused to let fear control me. 

I think the secret to figuring me out is making me feel like I have control. My husband is very good with giving me a false sense of control. I am ok with that. I keep my days very structured, any average stalker could figure that out. Once again I need to find equilibrium. In response to total chaos, I allowed the pendulum to swing too far in the opposite direction. I need to let go….

The cure for autism finale

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A couple of weeks back I started the cure series and, quite frankly, now I want to end it. We all know that right now there is no cure for autism, just better ways to manage it. I want to talk a little about what we thought may have caused it, mainly in the time frame of the 1980’s. 

The first possible cause was that my dad is a Vietnam vet. He remembers drinking the succulent sweet water laced with Agent Orange. My mom thought that the exposure to this toxic chemical may have caused autism in a first born son. Some sort of chemical induced gene mutation. Or because my dad’s family worked with heavy metals and painted cars with no ventilation back in the day. I remember for a period of time having to bathe daily for a half in hour in apple cider vinegar to rid the body of toxins. My brothers and I bathed at my grandma’s house because my parents never finished the upstairs bathroom in the house they built 40 years ago. They attempted to remodel the unfinished bathroom which left it unusable for the past 15 years. This was a topic of argument between my mom and Luke last time he was home, but I digress. 

When I was a teen, I blamed God while my mom felt blamed by God. Maybe she was being punished for something she did wrong or maybe something she didn’t do right. Maybe God was punishing her for being human or imperfect. I know that my mom struggled with this. 

Then in the 1990’s came the vaccine scare. My mom jumped on this bandwagon pretty quick. At this time, I was starting my own family. I decided that it was worth a shot at being careful with vaccinations. The theory did have a lot of face validity. I structured my own vaccination schedule that included slowly vaccinating my children after they passed the age of autism’s typical onset. I thought that even if there was a minuscule chance that this causes autism that I would do everything I could to prevent it. After living with an autistic sibling, I would do practically anything to possibly prevent it as a parent. 

The only other logical piece in the autistic puzzle was genetics. Fragile X had been ruled out. Looking at my mom’s large family with 8 total siblings and around 30 of their children, everyone would fall into a normal/average category. No disabilities or mental health issues. It is crazy how sane they are. When looking at my dad’s maternal side, they are all relatively sane too. My dad’s paternal side is filled with eccentrics. But out of 4 siblings, my dad is the only offspring. When the last sibling of that family died, we cleaned out the family house by putting a lot of stuff into my grandma’s newly vacant house. In the process of cleaning out my grandma’s house 6 years later, my brother stumbled upon an empty sample box of the antipsychotic med Haldol. Not a big deal, Matt was on that for his autism. Then my brother pointed out the expiration date on the box. The meds expired long before Matt started taking them. Hmmmm, another psychotic family member? Just another piece of the puzzle that doesn’t seem to fit anywhere. 

There is no cure for autism, just puzzle pieces that came from a lot of other mismatched and jumbled puzzle boxes. I really relate to my dad’s eccentric side of the family. Yes, sometimes I question my own sanity. That does mean I’m sane, right?!? I’ve always thought that normal was boring. Who in their right mind wants to paint a picture only using the same shade of blue?

Marathon training, 2 days to go

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I have been running 6 years now and racing for one. I signed up for my first half marathon and first marathon in January. No, it was not a part of a New Year’s resolution. To tell you the truth, I don’t believe in New Year’s resolutions. I think that I should try to be a better person every day of the year, not just a couple of weeks after a night of drunken debauchery. If you kept your New Year’s resolution this year, good for you. I can’t say that I know of anyone who has. 

I would have to say that I earned most of my grit in childhood. Every single time my autistic brother slugged, hit, or scratched me I told myself that the physical pain, bruises, or scars would make me stronger. I followed that mantra back then and I follow it now. The physical pain has made me stronger, gave me the endurance not to quit the race. 

I finished my first half in 2 hours and five minutes. It was a very humid day, so even though I was not able to finish in my goal time of less than 2 hours I was ok with that. I am hoping to finish the marathon between 4 and 4 1/2 hours. Less than 4 hours will be unrealistic. Between 4 1/2 and 5 hours would still be ok. I will be sad if I can’t do it in 5 hours. We’ll see. 

Will I buy marathon photos? No way! Every race photo I’ve seen of myself makes it look like I am dying. Not a pretty picture. If you look great in those pictures, you are not trying hard enough. I often hear nonrunners say that they don’t want to run because we look so miserable. So I try to smile and wave back at the people that are friendly on the road so more people want to join the sport. Neighbors and acquaintances have asked why I am out on the streets so much. Now why does that make running sound so dirty? 

I wish my kids were hard core runners, instead my dog is. He cries like a baby when he can’t run. He is almost 8 and kept limping around after running with my husband. We put our dog on joint pills and it has been really working good. Almost too well, in fact. The first day he dug a hole to China. Then he escaped our yard and dug another hole in attempt to release our neighbors caged rabbits. Good thing they caught him before he succeeded. I think that I could use some of those pills! Wow, we don’t need an aged puppy running around. 

Other than that, I have been fluctuating from excitement to terror. If running a marathon is anything like childbirth, at least it doesn’t last as long. 

Up north, part 4

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You may or may not have noticed that I took a couple of days off from blogging. I am getting really close to the 3 month anniversary of my first blog. I remember reading somewhere right before starting this new adventure that statistically most people get frustrated and quit blogging after 3 months. Sorry you can’t get rid of me that easily, I just went up north for the last couple of days. 

Saturday morning I had to pick up Arabella and her BFF from Bible camp. I was running late, but thought I would be forgiven for being late since I was reading my Bible in a year app. This is on my bucket list and I am over half way done. I prefer to be a fully informed believer. Plus I had to turn around because I forgot to feed my cat. No excuse for that, I know.  By being late, I avoided a big accident on the highway. Once again, it wasn’t my time to go. 

It was a hot weekend up north. We spent tons of time in the water. I promised to try to relax and take it easy before the marathon. I told myself that I wasn’t going to be crazy and swim across the lake, so I got about half way across and turned around. Damn, I guess I did swim the lake. Oh well. Sunday soon turned into Monday and brought with it a 30 degree drop in temperature with lots of rain. So now I was forced to sit and do nothing. No more swimming. We played a lot of games and talked. 

My mom apologized to me for having a difficult childhood. She was very upset about some things that have been happening in Matt’s group home (another blog). She wanted reassurance that I would take care of Matt when she leaves this world. I told her I would even though last week I told Paul that I would like to leave this area in 6 years when we are empty nesters. Paul is an only child, although he does have stepbrothers that are in and out of prison in another state. So I guess we are stuck. 

My mom and I played cribbage this morning. I got the perfect hand. I got a jack of spades with three 5’s and a 5 of spades was cut. I texted Paul and asked him if I should frame my hand or head to the closest casino. He said my chance of getting the perfect hand was one in 216,000. What luck! But since I wasn’t able to take a shower in 3 days and had a car full of children, I thought that going to the casino might be frowned upon. Since it was a once in a lifetime hand that was dealt to me, I will just check that one off my bucket list too. After this week ends, I may have to add a few more items to my bucket list. I am considering adding triathlons… 

Little to no provocation 

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I can feel the gentle, slow downward descent of my mood. My heart in utter despair. I cry with little or no provocation. I haven’t slept for 3 days. It takes forever to fall asleep. I wake in the middle of the night, lying awake for hours. I awake again at the crack of dawn exhausted. I’m not hungry. I can’t eat without acid reflux. I worry about the things I can’t control. I pace the floor. Any attempts to rest or nap leave me frustratingly wide awake. I wouldn’t wish the hormonal fluctuations of a middle aged woman on anyone. 

It was harder this week cleaning out my grandma’s house. The memories some of the items brought back were almost too painful to bear. When I try to reach out to my grandma for comfort, she is not there. What I wouldn’t give to hear her voice again or to even smell the scent of her perfume on her clothes. All I smell is dust and decay. Emptiness. Nothingness. 

It is incredibly stupid to cry over the meaningless little items that I lost. I can mourn over the stupid little stove, but can’t cry over the friends and family that autism cost me and my family? The childhood family vacations with the whole family that never happened? I can’t even remember one time that we went out to eat together as a family. I have to continue to pray for strength to make it through this process of opening myself up to and dealing with unresolved issues. 

I will make it through. I will be ok. 

Family dynamics of autism

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Growing up, we all had our roles. Even dysfunctional families find ways to function. As mentioned previously, my parents relationship was rocky before having 4 kids in 5 years. I would even go as far to say that my dad probably is within the Asperger’s spectrum himself. Now throw in the violently autistic child and a wife who was trying desperately to juggle flaming torches. 

As oldest, my main task was fixing. I also held the role of caregiver, decision maker, best friend, advisor, and emotional support. I aligned myself with my mother. It was my task to keep the flaming torches in the air. If there was a problem, it was my task to fix it. I was loyal to whatever cause was important to my mother. As an adult, it has been difficult for me to listen and empathize when everything within me tells me to fix. I had to suppress all feelings in order to use my head to fix. It worked a little like email. I kept deleting my feelings until finally my deleted items were full. Then anger, depression, and anxiety flowed forth like spring’s river. My email is working now, but my husband and I both lack empathy in order to survive childhood. I need reminding to listen and not fix all the time. It has been a bit of a marriage struggle, but as a team people have been hard pressed to take advantage of us by pulling on our heart strings or pull the wool over our eyes. So it is not all bad. 

Mark’s task was physically working hard and advocate for my dad. He aligned himself with my dad. If my mom packed up the car with all of her stuff and was heading down the driveway, it was Mark’s task to stop her. He would tell my mom that it was not my dad’s fault, that he was just not good at relationships. He also earned my dad’s love by working hard even though my dad was lazy. For example, my dad will take the lawnmower to the end of the driveway to get the mail (sometimes in his underwear, of course). Or that one time we got a couple of inches of snow, he was too lazy to clean off his windshield and ended up in the ditch instead. 

Mark worked so hard that he blew out his back as a teen. I have never seen anyone work as hard as he does. When I told him that I was running a marathon, he said he could outrun me. I think that I threatened his role as the family brawn. When Mark wasn’t working, he preferred to be invisible. Mark and Carla decided they are going to have a small wedding with no one standing up. Mark said that he was tempted to have our autistic brother Matt be his best man because Matt’s behavior is so bizarre that no one would notice Mark. That was very profound. 

Luke, the youngest, had the role of instigator, comforter, caregiver, and clown. He was a mama’s boy and my dad hated him for it. His main job was to make sure that Matt did not get all of the attention. He was the one who cut the wires on my dad’s electronics and kicked a hole in the wall. When he got older, he was the one who played strip volleyball with his friends in the front yard. Girls running around topless in the front yard.  He also wrestled with my dad in the front yard over car keys which resulted in an overnight stay in the ER for my dad with heart palpitations. After awhile my parents gave up, he started driving at 14. He was also the scapegoat and received the brunt of my dad’s anger, deserved or not. 

Somehow we all managed to function. We are survivors. We made it through with our sanity intact, held by a thread.  We are strong, but not without a few battle wounds.