Matt needed more help than the local allergist could provide. That summer we took another road trip with aunt Grace from WI to Texas to a hospital that specialized in caring for people with severe environmental allergies. But first Matt had to go through a major detox. I think it may have included extreme fasting. Now Matt had what doctors called a failure to thrive. Fasting made him very sick and feverish, mom thought he was going to die.
Mom, aunt Grace, Luke, Matt, and I loaded up the car for our “vacation” to Texas. The plan was that we would drive to Texas, leave aunt Grace’s old car there for mom and fly back home doing the reverse for their trip home. We made it there in 2 days. Time to drop off mom and Matt for the summer. To enter the hospital, we had to wear 100% Cotten clothes, no synthetic fibers. Mom bought a new wardrobe that summer like she was going on a cruise. Reading tags for the 100% cotton.
Mom made a lot of changes after the hospital trip. We got rid of our wood stove and got an expensive electric furnace that was safe for people with allergies. My brother got a charcoal mask to wear to filter toxins. If any farmer or the county sprayed pesticides within a half mile of the house, she would call them upset that we did not have time to leave the area. She took down her curtains in the bedroom because they had formaldehyde in them and put up old sheets. We had to brush our teeth by rinsing our toothbrush in peroxide and dipping it in baking soda. Glass bottled water only for Matt even though we had artesian spring water flowing from our well. Any new items had to “gas out” in the garage before it was allowed in the house.
No perfume, nail polish, or hair spray for me. No problem, I took my hair spray to school with me. Sneaking around the middle school like the girls who packed trashy clothes that their parents wouldn’t let them wear out of the house. C’mon it was the 80’s, I wore a half bottle of hair spray a day.
Still no cure.
i awoke again this morning to the sound of my cats crying. Painful crys, not the cry of hunger.
My mom was offered 2 free cats. I was so excited, I remember going to pick them out. We never had a pet before. It was a fall day, I vaguely remember seeing pumpkins in a field. I’ll take the black cat and the tiger striped cat. I loved the kittens. They were so soft, I loved stroking their beautiful glossy fur. They were my cats, I picked them out and I loved them.
Matt hurt my cats, but it was okay. I made a safe little cubby hole for them to hide in. But I couldn’t always protect them. Sleep stopped me. I woke up again to the awful wailing of the cats. God, make it stop. Matt wrapped his arms underneath the front two arms of my cat and bent over squeezing them. They would cry, he would laugh. One day my indoor cats were gone. Mom said they both ran away. I think Matt killed them, but I don’t want to know. Mom always said hate the autism, but don’t hate Matt.
Mom took us all in for allergy testing. I remember the little pinches of shots on my arm and waiting to see if any got big and red like mosquito bites. It was also the first time I got my blood drawn. I watched the blood filling the vial when all of a sudden the needle slipped and blood started running down my arm followed by a huge bruise. Now before you worry about me, I have AB blood type. Yup, universal receiver baby. That really lifted a lot of guilt about not wanting to be a blood donor in the future. But I digress.
Matt was allergic to everything. He needed more testing. Except Matt’s behavior was so violent they had to close the clinic to other patients. I just realized why my brothers and I went in for testing right now. Guilt. He had to close the clinic to other patients but my brothers and I were “immune” to Matt’s violence. This time mom was literally paying for Matt’s behavior.
Matt had a totally gluten and casein (dairy) free diet and only ate organic foods, yes back in the 80’s! Not only that but mom did not allow artificial colors or sweeteners in our diet. I didn’t live on Mac and cheese as a kid and we were the only kids in the neighborhood who weren’t guzzling milk. Don’t tell my mom this, but she never was the worlds greatest cook. It didn’t help not having a lot of options. We would eat chicken sprinkled with paprika and roasts with grease soaked carrots every week.
My dad wasn’t a big fan of my mom’s cooking either. Supper time was very stressful in our house. My mom had to tie Matt and Luke to their chairs with aprons so they would stay at the table. Luke was hyperactive and acted up to get attention. My dad would come home from work, set down his tool box by the door, and come to the table. He would take a few bites and start yelling, “what is this dog shit”? This was followed by him by him banging his fists on the table and flinging his plate across the table. He would sit in the next room and watch TV, laughing at the funny parts. At this point, my mom would leave the table crying. Now it was time for my job, it was time for me to be the comforter.
Needless to say, this was not a cure either. Although it seems to help with some of the stranger behaviors that I will expand more on later.
It is amazing what an extreme loss of control can do to a relatively sane persons mind. My mom has now taken over the cure since my dad’s little misstep in part 1. I can’t remember the order of the cures anymore, just the cures themselves.
This cure is to keep my brother away from all exhaust fumes. My parents had a somewhat long gravel driveway. In the summer of the refrain from auto exhaust cure, my mom set up sawhorses half way down the driveway. No one was allowed to park or go past those sawhorses with a motorized vehicle without the wrath of my mother. My dad even used a non motorized push lawn mower that summer. In those days, we still did not have A/C in the house. If there was an east wind, we had to barricade the house and lock all the windows so the wind would not blow auto exhaust fumes in the house.
Riding in the car was particularly tricky. Back then the major highways by us were two lanes. Being behind a semi would elicit a panic attack from my mother. All vents blowing exhaust fumes into the car had to be turned off. My mom would go to great speeds to pass the trucks.
The winter provided new challenges too. My dad would snowblow the driveway and get exhaust fumes on his clothing. If he did not remove his outer clothing in the garage my mom would scream at him for bringing exhaust fumes into the house.
Big surprise that this cure did not work. Please if you know who I am, please do not tell my mother about this blog. I still need to protect her.
My mom said Matt was a normal baby. Brilliant, in fact. He knew the alphabet before age 2. He was speaking. Then one day she went to get him from his crib and he wasn’t there anymore. He stopped talking, only screamed from nightmares we knew nothing about. Blame. Blame. My mother sought medical help and found no answers there. Refrigerator mom, that is what they said.
My dad thought he found a cure. My first memory, I was around 4. Matt was 3, Mark was a toddler and mom was probably pregnant with Luke. We were all crying and I remember being afraid. Matt was having another fit, screaming and throwing himself on the floor. My dad was yelling and hitting Matt. I heard banging against the cabinets in the kitchen. Crying, my mom trying to hold us back stop us from seeing. Oh, but I did see. I saw that my dad did not find the cure for autism. And that was the beginning of my mom trying to find a cure.
Ok, last night’s blog was pretty intense. Whew. So I’ll lighten things up a little with the 20 minute trip to Canada. I once had an eccentric great aunt named Grace. Grace was the God fearing, feminist, firstborn matriarch of our small clan. Grace was always right, always did the right things, and was rich. She also had 3 younger brothers and out of those four siblings came one child, my dad. Grace never married, lived at home except the time she spent in the military during WWII, and made it up to VP at the local bank in a time where most women didn’t finish high school.
One day my aunt Grace heard about a women’s church conference out in South Dakota. She loaded up my mom, dad, youngest brother Luke, and myself in her little two door Cutlass to take a drive a couple of states away to check it out. Once we got there we found that all of the hotel rooms within a 2 hour radius were sold out. Whoops! We checked out the conference for a half an hour then drove 2 hours to find a hotel room. After making several cattle stops, we ended up in a small town out in the middle of nowhere. Small charming hick town like the one I grew up in. We went to a restaurant with 5 tables and I was excited to find out that the jukebox played songs without money.
Leaving the conference behind, I talked my aunt into driving a couple of hours to go to this amazing water park. I was so excited. We got there and toured the water park with so many kids having a great time. After the tour I wanted to stay, but my aunt said that I got to “see” the water park and it was time to go. She was hungry and she was paying for the trip. I refused my lunch. I am the type of person that can eat only one chip without eating the whole bag.
Then we drove to Wyoming to take a one hour hike around Devil’s Tower and it was time to drive back home to WI. Except my aunt wanted to drive an extra 8 hours to Canada to buy tea. So off to Canada we go. There was a national holiday in Canada when we got there. My aunt found her tea in 20 minutes and back to the border we went. My dad bought a case of beer. Being the honest man that he is, he told the people at the border which resulted in a full car search. Who goes to Canada for 20 minutes? Crazy!! Crazy.
it was all I ever wanted and prayed for my whole life. My parents had four children in less than five years. I am the oldest with three younger brothers. The brother born after me is autistic. We were all 70’s babies, back in the days when autism was still rare. My parents are polar opposites and not in the magnetic attraction way. My dad was a cruel man when he took any interest in us at all. My mom was strong. Not at all the refrigerator mom she was accused of being. Sometimes I think she blamed herself too.
My autistic brother, Matt, was nonverbal for a long time and very violent. Some of his daily activities at his worst included repeatedly banging his head against the wall (mom put a helmet on him), punching, kicking, biting, scratching, and pulling my hair, throwing things, running away from home, and breaking my things. He gave my mom a black eye and bloody lip. She cried a lot on that day. A majority of my childhood consisted of being physically abused by my brother and verbally abused by my father. I took on the role of parent to my brothers before I was a teen because I was the responsible first born and my mom needed help, a fixer.
By the time I was in my late teens, I was on the highest possible doses of antidepressants with no relief. Prozac, anafranil, buspar, zoloft, Paxil, and lithium To name a few. I was never allowed to fight back when my brother hurt me because I knew better and he didn’t. I stopped feeling everything. Gradually the feelings came back, feelings of rage, depression, and anxiety. Please, please parents of the disabled I beg you not to use your firstborn as a crutch. I lost my childhood and I can’t get that back. Some days the anxiety was so bad, that I would pray for the relief of depression. Exercise has helped me exorcise my demons. I am not talking about yoga people, I mean hard core marathon training hours of exercise.
I spent my childhood praying for the perfect family, now I have it. A wonderful husband that is nothing like my dad. And in less than five years, I had three children none with autism.
I had a pet robin when I was a kid.
I awoke early this morning, the day after my first 18 mile run. My husband kicked my foot this morning at 4:13 AM. Kind of like after you have a c section and you get a bear hug or have your in grown toenail removed and stub your toe. Ok, it wasn’t that bad and I wasn’t sore at all. But I couldn’t go back to sleep. I started thinking about the birds…
I have a love hate relationship with birds. When I was young, we had a band of wild, swooping swallows by our house. They always build nests over the lights on the front door that we never used. The newspaper my dad wadded up over those lights never kept them away. One day they were particularly wild after my dad knocked down a nest and a bird flew straight into my stomach. They dive bombed my cats too, although that was funny.
As a runner, birds freak me out. They fly next to my head and I can hear their little wings flapping. Now I run by the birds with my hands in the air like I won the Olympics. Waving my arms in the air so I don’t hear their whisperings. At least my head is safe.
Last summer I had a bird that would fly with me for a mile every run. I could see its shadow next to me on the pavement. It reminded me of my bird long ago. One summer when I was around ten, I had a pet robin. We had 2 cherry trees in the backyard. They produced tart cherries that no one ever ate or made into a pie. My dad had a habit of shooting birds that would go in those trees and eat the cherries. (In the future they put up nets to protect the uneaten cherries and later gave up altogether). One day my dad shot a robin. She had a nest with 3 baby birds in it. We rescued the birds, but 2 were too little to survive. The strongest survived and became my constant companion. I fed him worms every day, but he never learned to fly. He would sit with me by the lake up north. Just a girl and her pet robin. Then fall came, school was starting and the worms would be scarce. My little brother decided to make a home for the bird to protect it and accidentally dropped one of the boards on him during construction. Years later I got a f(l)inch. He was always afraid of me and it wasn’t the same.
I decided to run yesterday and not today because of torrential downpours and flash flooding that amounted to a few sprinkles. Now that is for the birds all right!
Well I guess I can check publish a writing off my bucket list since there is a little button in the corner that says publish. Yes!
My bucket list:
1. Write something that gets published. Check.
2. Run a marathon (already signed up and bought the sticker).
3. Travel to all the continents except Antarctica (I live in Wisconsin people, we have seen enough cold weather to last a lifetime).
4. Read the bible in a year (half way there).
5. Be a lead singer in a band.
6. Drink green beer all day on St. Patrick’s day (we covered the living in WI part already).
7. Get a tattoo.
Last year I turned the big 40, thought I better get my bucket list together. This week I started working on training for a marathon. Today I ran 18 miles for the first time. Just happened to be the hottest day of the year so far. My goal was to run it without stopping (success). My next goal will be to run it without swearing! 😄
My basic theory about running is that runners are masochists. I mean really, every part of your body hurts sometimes for days. You could loose toenails. People think you are crazy, I am. Young people that are into cutting, think about running instead. Really, I’m serious. And the runner’s high, well that is nice but short lived. Always happens around mile 8, that point when you feel like your going to pass out. You know I have the runner’s high if you see me run a little crooked.
Last week I ran my first half marathon. I did it in 2 hours and 5 minutes. Didn’t meet my goal of under 2 hours. In my defense it was really humid. I told my brain to start sprinting at mile 10. I did, up a damn hill. Note to self, check elevation map. Passed all the walkers though, running up that damn hill. Even missed people handing out the beer, damn damn hill. So much for sprinting the last 3 miles. Oh well. I did see my uncle though standing alone in a grassy area in a full suit. Runner’s high? He wasn’t there.
Half my family congratulated me on the big run. My brother said he could outrun me (good luck) and my dad said that my legs may be strong but my arms are weak. I say thanks for the motivation (well that’s not what I really thought).
I’ll let you know if I can walk tomorrow.
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