Family

Back to school 2

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Ok, here is the blog you have been waiting for…. As a follow up to an earlier blog, I tallied up the cost to send my 3 kids back to school. I also realized the benefit of sending my kids off to school this morning as they were fighting on their way out the door. Lol. What does an average middle class American family spend to send their kids back to school? I don’t know, but here is what I came up with. I spent a total of $450 on school supplies. The big time expense this year was a calculator that cost over $100. I really was hesitant on this purchase until the teacher said that all math problems will be shown on this specific calculator. If I buy a cheaper model it will be at the expense of my child. What really sold me was that it could be used on the ACT test assuming that my child doesn’t lose it before then. When asked about getting an extra warranty, I said forget about it. I mean, really? I don’t think that my son will be overusing it. The probability is statistically higher that he will lose it. 

I spent another $230 on school fees. This included laptop warranties, marching band uniform, parking permit, and general class fees. Plus I still need to sell 10 magazines or pay $100 so my daughter can graduate. It was hard to send off my daughter on her first day of her last year of high school and my son to his first day of high school. I know how fast the time flies. Almost as fast as this summer went by. 

I spent another $190 per child on clothing which included shoes. Both my son and youngest daughter graduated from kids clothes into adult clothes this year. My son grew a foot since last year and is taller than me now. My 12 year old daughter went from a kids size to an adult size 12. They all have shoe sizes bigger than mine. I found that adult shoes cost a lot more than kids shoes. 

So, I ended up spending a little more than I thought I would….maybe next year I don’t want to know how much it costs to send my kids back to public school. I will focus on the benefits instead. Sounds good to me. 

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?

A letter written to my only son

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Next week my son will be starting high school for the first time. As part of the orientation tonight, parents are strongly encouraged to write a letter to their child to read upon graduation. I wanted to share my letter with you:

To my only son as you graduate, 

I remember the day you were born. Your little cowlicks promised wild curls that would be untamable. You were a mama’s boy, I thought for awhile that you would never grow up, never want to leave. We would sit for hours reading stories of monkeys stealing caps, the adventures of toad and frog, or about the puddle ducks and Peter Rabbit. Then one day we put the kids books away. 

Remember when you used to suck your fingers? We tried everything to get you to stop. We tried putting a mitten on your hand at night and the spicy varnish which you exclaimed to like spicy foods. Then one day, you decided that you were too old to suck your fingers and stopped on your own. 

Then you got older still. You told your dad and I that you no longer believe the things that we believe. You said you needed to figure things out on your own. Even though we worried, we knew that you needed to find your own way in life. I sometimes fear that the road you walk will be rocky, but sometimes even the “Rocky Road” can be sweet. Once you find your place, I know that you will stand up for what you believe even if you are standing alone. That stubbornness and conviction is something I’ve always admired in you. 

Earlier this week, you told me that you really didn’t want to be with me anymore, that you wanted to hang out with your friends. For a minute, I wanted that little boy back. As much as I want to hold you tight, I know that I have to start untying the strings that have you fastened to my heart. I have to start letting you go. I hope and pray that you find the right path to start your journey on. No matter what happens, your dad and I will always love you. 

Love, Mom

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. 

Modesty, or lack thereof

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Have you ever seen a 350 lb man mowing the lawn in a Speedo? That would be my dad. He was never much for clothes. I suppose we were lucky that he tromped around the house in underwear versus nothing at all. He is the eccentric man who goes out to eat in pajama bottoms. If you come over unannounced, he would answer the door in his underwear. He didn’t care if people were over. Mom had to remind him to close the door when using the bathroom. Nudity really wasn’t a big deal, it was natural. Almost normal growing up. If you could call how I grew up normal in any way. 

My mom was more modest. She had really bad varicose veins and still does after surgery. She said that 30 hours of back labor would do that to you.  I guess I am lucky to have had 3 c-sections. After 30 hours of labor, my brother Matt entered the world with a broken clavicle bone. Talk about intense labor. My mom would always wear pants in summer. If she wore shorts, she would wear nylons under them so no one could see her “ugly” veins. 

When my autistic brother Matt hit puberty, he had some modesty issues as well. He would often stand at the end of the driveway and expose himself to whoever went by. My grandma had 2 little girls that lived next door. Any time they were around he would drop his pants and wiggle his penis at them which elicited lots of giggles. You probably now understand why I do not embarrass easy or why I never had a lot of friends over growing up. Yes, my brother exposed himself to a couple of friends while my dad waltzed around in his underwear. To make matters worse, Matt would traipse around the house in an old bridemaid’s dress of my mothers. After complaining to my mom about this, she said who is he hurting and just let him. 

On the flip side, no one cared what I left the house wearing. Short mini skirt, no problem. Sometimes I have to ask my husband. Is this too short? Is this too low cut? 

Since I also helped with Matt’s care, part of that included showering him. While other college kids were out partying on a Saturday night, I was showering my brother. Did I mention that he refused to wipe himself? He has tactile sensitivity to toilet paper and napkins. He also will not aim himself while peeing, which created a messy bathroom. Mom always told visitors that the condensation from the toilet was causing the leakage. It was a good possibility that if you got up in the middle of the night to use the bathroom that you would step in pee. And that is why I could care less if my husband puts the toilet seat down. That is probably also why when Aunt Grace needed showering and diaper changes when she got old that I showed no hesitation either. What is normal? I am still trying to figure that one out. 

My mother, my heroine

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My mother’s life has been anything but ordinary. She was born prematurely in a foreign country. Despite my grandmother taking medication to prevent premature labor, my mother arrived early at a hospital in the Panama Canal Zone, after my grandma flew several hours to see her husband who was stationed there in the Navy. She weighed 4 lbs and stayed in an incubator for a month. This was in the 1940’s and she wasn’t expected to live. 

My mom grew up in a rural community and met my dad in a one room schoolhouse. Her family was poor and she spent most of her summers picking cucumbers for a local factory to help support her family. She didn’t have a lot of time to play and had one doll. As a teenager, her mother died after delivering her eighth child. My mom was in college at the time and spent her weekends helping take care of her 6 younger siblings. My dad went off to Vietnam. He came back a different person. College finals were cancelled due to war protests and bomb threats. 

My parents eloped. My dad went to work on their wedding night, my mom cooked for their sponsors. The night ended with freezing rain. My mom wondered if she made a mistake. My dad started drinking a lot. He was depressed and sat around with a gun in his lap staring off into space. He was going through PTSD after Vietnam. He drove a tank in the war and one day all of his buddies died in that tank. He was the only one that walked away unscathed. He became abusive and mean. My mom wondered if she made a mistake. My mom got pregnant with me. When I was a month old, a tornado was headed towards the trailer park we lived in. Sirens blared, it was time to take shelter. My dad just sat in his chair and stared. My mom decided it was time to pack up and head back home, they were hours away from family. 

My parents lived with my dad’s parents for 2 years while they built a house and started a new life. My dad stopped drinking. My mom got pregnant again. They moved into their new house and planned on having 2 kids. Their plan for 2 kids ended up turning into 4 kids within 5 years. Their second child was violently autistic. My parents fought constantly. My mother wondered if she made a mistake. My mom was very beautiful with plenty of opportunities to leave my dad. A best friend’s husband wanted to plan a hook up with her up north. No one needed to know. Another friend’s husband kissed her. I just found out about this and he was a great guy. Guess who I ran into right after she told me? Other men pursued her, but she ran away from them instead of running away with them. That was one of my mom’s greatest strengths, staying committed to a marriage she was miserable in. This is such a rare quality nowadays.  It is hard to live up to parents who have a wonderful marriage. It is even harder to live up to a parent sticking with it when given ample opportunity to leave. 

My mother was the family breadwinner. She is still working full-time at 67. She was emotionally strong when faced with many difficult life situations. She was there for us when my dad couldn’t take it. She has patience when others have none. She is a hard worker. She handles difficulties with ease. She has been an anchor through all of life’s storms. I am proud and honored to have her as my mother. What a blessing her life has been to me and many others. She has been a lifelong advocate for the disabled and their parents. She has helped many with her empathy and compassion. She has been very generous with the gifts she has been given. She is one strong woman. 

Happy birthday, mom! I love you. 

Back to school stress

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I woke up crabby this morning. Irritable. Stressed. My 3 kids have summer school this week sporadically all day between the hours of 8 AM and 8 PM. It really wouldn’t be that big of a deal except that we live 20 miles from the school. I made 2 trips to the school today to pick up and drop off kids, my daughter made one trip to school which equals over 2 hours of combined effort. Plus I fit in a 6 mile run and put in a couple hours at work. I feel downright exhausted. Any stress that was removed over the weekend was put back on the minute I walked back in the door. Mom can I?.. Troubles waking up my son early to go to school. I also faced the prospect of confronting a teacher today as well. I hate confrontation. The teacher was not happy that I was having my teenage kids waiting at school between activities. With drop off times at 8 AM, 9 AM, 11:30 AM, and 4 PM and pick up times at 10 AM, 2:30 PM, and 8 PM I didn’t see how this was going to happen. I was angry and spent some time swearing. I did talk to the teacher and she was understanding. Thank God! I haven’t developed my super mom powers yet of being in 10 places at once. 

I’m also getting the back to school ads in the mail. What a racket that is. When it is all said and done, I will probably spend over a thousand dollars on it. You know what, I am going to keep the receipts this year to tell you how much I spend! Great blog idea. Thanks. The sad part is that I don’t think they need half the crap that I buy on their list. Or they lose it. Or, as was the case last year, some supplies were stolen. Lots of times I just buy the cheap crap. No designer notebooks with puppies, kitties, or football players for my kids. School clothes are a little different, I usually go midline there. Cheap shoes and clothes wear out in a matter of weeks. If I am lucky the shoes and clothes will last long enough for the kids to grow out of them. That is not saying much as my son grew a foot within the last year. 

Talking about supply lists, who creates these things anyway? Your child needs exactly 10 number 2 pencils but 3 need to be yellow, 3 green, and 4 red. Buy dry erase markers, but wait they need to be odor free. Buy 9 glue sticks, but only of a certain brand the others won’t be accepted. Accordion folders only, trapper keepers will be confiscated. Hey, aren’t sciccors considered a weapon now? Paper non perforated made from recycled materials. Highlighters, no fluorescent colors. Permanent markers, non staining narrow tip. Gym shoes, non skid laced only. And the list goes on… I think there is a sadistic teacher out there making these lists because they have to put up with our bratty kids all year. They laugh envisioning us at the 30th store grovelling on the floor because the last pink eraser is sold out. I miss the days when mom sent us off on the first day of school with a couple of folders, pencils, and paper and called it good. 

What happened after….

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Almost two years after the birth of Angelique, I had another baby. A little boy that I will call Alex. Alex was an easy baby. He was always content, rarely cried, and followed a very consistent feeding and sleeping schedule. Both babies slept through the night at around 2 months even though I nursed them. I figured I had this parenting thing down pat. Life was going fairly smoothly for awhile. After those first couple of years of peace, life got a little dicey. 

After Matt attacked Angelique on her 4th birthday, life got a little crazy. My mom couldn’t accept that I needed a break from my violent autistic brother for awhile. She pleaded, pressured, and begged to have Matt in our life again. She would drive over a couple of times a month just to have Matt wave at my kids through the car window. She would help out if Matt was included. I couldn’t risk my 2 and 4 year old being hurt by a grown man. I couldn’t. Matt almost exclusively attacked little girls. It wasn’t long after this that I found out I was pregnant and having a baby girl. I didn’t want to tell anyone the sex of the baby, so my mom figured out it was a girl or I would have said something. 

Right around this time, I started babysitting for the neighbor girl about 50 hours a week. She started calling me mom and hanging out with us when I wasn’t babysitting. Every weekend she would stay at her grandma’s while her parents partied. I secretly resented them for having a break. I can’t say that I didn’t feel relief after they eventually divorced and moved away. Also, during this time my husband had started a business on the side. He was working for another company and went down to part-time so he could do this. He eventually used up all of his vacation days and they gave him an ultimatum. Either come back full-time or leave. He left. The stress started piling on again. 

When it came time to schedule my final c-section I opted to do it on a Friday. I had images of watching my other 2 kids while I was in the hospital if it was on a Monday like they suggested. My mom came early Friday morning to watch the kids, thankfully Matt did not get up that early. Arabella was born. Paul went to work. He was a one man show and we had bills to pay. Mom dropped the kids off mid morning as Matt had a dentist appointment. Paul had the kids with him off and on at the hospital all weekend. He had someone from church watch the kids Monday morning to pick us up from the hospital. Then my mother-in-law helped Monday and Tuesday. After that I was on my own, less than a week after major surgery with a 4 year old, 2 year old, and a newborn. A newborn that cried incessantly. That didn’t sleep through the night for a year. 

I felt hurt and angry at my mom for leaving me alone when I needed her the most. Matt always came first. I gave up my childhood for this? In my mom’s defense, she was working full-time and it was her busy time at work. Matt still lived at home and she no longer had my help. Six weeks after Arabella was born, my grandma had open heart surgery and for some reason I was handed the baton of throwing all of the holiday parties. I ended up getting mastitis twice and blamed myself for having a difficult baby because I was very stressed.