Parenting

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.

The civil war reenactment

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Apparently there is a memo out there about the things parents shouldn’t do with young children. Apparently that list is a little longer when you have a newborn. But I am a parent that never got that list. When my aunt and uncle told us that they were going to be in a civil war reenactment in our area, my husband and I loaded up our 5 year old, 3 year old and newborn into the car. 

Everything was going well at first. I just didn’t realize at the time how much acting I was going to be doing in the reenactment part. We had a fun time touring my aunt and uncles tent. My aunt sewed all of the costumes. We had our family picture taken in civil war period clothing. I think every family should do an old time picture just for fun. Then my uncle and two teenage cousins geared up to go to the battlefield for the reenactment. 

This is where things got a little sketchy. I probably should have stayed behind or had my aunt take the baby at this point. But I thought, this is just acting. I mean, how bad could it really be? We took the kids to an arena type area without seats. We were there a few minutes when my baby started crying unconsolably. After dirty looks and nothing else worked, I did what every breastfeeding mother of a newborn would do (except being there, of course).  I tried offering the comfort of milk. At this time, an announcer stated that the event was about to start. He said that there was going to be loud gun shots, loud noises, and cannons. It was advised at this time that parents with young children exit the way they came in. Not even stopping to reattach my bra, I headed out the way I came in. The only problem was that I came in the back way. When I left this way I couldn’t go back in and to make matters worse I was heading straight towards the cannon which was going to go off in a matter of minutes. The man next to the cannon said there was nothing that I could do but run fast. So here I am running as fast as I can with a newborn and my breast half hanging out. 

It really didn’t feel like a reenactment to me. I’m sure that mothers were running away from cannons all the time during the civil war. Lol. I couldn’t stop laughing when the other people saw me running. I haven’t been back to a civil war reenactment since. But with my performance I could say that I had a lead role. I’m surprised I didn’t end up in the local newspapers. 

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. 

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. 

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

Marathon training, less than 26.2 hours to go

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My bags are packed and I am almost ready to go. I don’t know if I will be able to sleep tonight. It has been a couple of weeks since I got a good nights sleep. I am rather exhausted. I’m sure that you have all heard that having a newborn, infant, or toddler will give you chronic sleep deprivation. Maybe you have experienced that yourself. Waking up in the middle of the night, up at the crack of dawn. Then your children hit the middle childhood years and you can finally sleep again. The perfect ages, between 5 and 10. They still want to be with you and you don’t have to lug around the stupid diaper bag. Then your kids enter their teen years and you are sleep deprived again. This time you are up late at night waiting for kids to come home or you can’t sleep because they are loud. Car seat toddlers become car drivers overnight. Then your crazy middle aged female hormones give you insomnia and you wake up at the crack of dawn. That is where I am now. I was the first one in bed last night at 10. I can’t tell you how many times I woke up. Plus my teenage son usually goes to bed right around the time I get up in the morning. He isn’t the quietest. It doesn’t help that I can hear a pin drop while sleeping. I tried, believe me. 

I didn’t tell you this earlier in the week. One of my daughter’s friends got in a car wreck this week. Her friend let some guy that she liked grab her car keys and race off in her car with her and a group of friends, but not before stashing his hash pipe under the seat. He drove quite recklessly and ended up totaling her car leaving everyone a few inches from death’s door. And this is the reason, my friends, that parents of teens don’t sleep well at night. I am happy that my driving daughter is more responsible than that, but she is not the only driver on the road. Yikes!

The weather conditions look perfect for the marathon tomorrow. I was excited to see that my hotel has a full breakfast until I called and found out it starts the same time as the marathon. Hmmmm… So I am packing some bananas, avocados, and string cheese for the morning. I am hoping that is adequate. My acid reflux has been nasty this week, so I hope that I can keep it under control. The last 10k I ran left me in a moderate level of pain the whole race. I don’t want this. I want to eat enough to keep up my endurance without having any stomach issues. I also want to drink enough to stay hydrated without having to pee at every mile. That will be a thin line. 

I spent the week wearing every running shirt I own to give me courage. This morning I plucked my eyebrows, shaved, and put a couple of blue streaks in my hair. Not near my eyes, because I worried that sweat would drip blue into my eyes and make me look like a Smurf. I cut my toenails, hopefully not for the last time. I washed and packed my outrunning my demons shirt. Compression socks? Packed. Extra running songs? Downloaded. Running watch charged? Check. Extra ear buds? Check. I am ready to go. The conditions are ideal to have a good time. And a good time is what I’ll have because I love the sport. 

I also want to thank everyone for your support. It means a lot. Also a special thanks to my husband. Thank you for supporting me taking extra time off of work to run. You always told me I needed a hobby. Thanks for the push into running and thanks for supporting my blogging. Both have been very therapeutic and have taken up gobs of my time. Until tomorrow, my friends….this is my last pre-marathon blog. Oh my! 

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. 

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. 

Real life Tetris 

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What is easier, training for a marathon or blogging about painful events in my life? In analysis, they both take approximately the same amount of time per week. I would say, without a doubt, that training for a marathon is much easier. I only feel tired and perhaps physically sore after running. I feel tired, sometimes upset, depressed, and emotionally sore after blogging. 

Is there anybody out there? Am I all alone? Where have the other siblings of the disabled gone? Have you escaped? Have I not? How can I? Why can’t I? I don’t want to do this anymore. It is too personal. The feelings are too raw. I am picking away at old poorly healed scabs. This worries me. 

I feel very overwhelmed in general. I was just notified of mandatory practices for my kids at school the next couple of weeks that conflict with other mandatory practices. When do I have time to work? What about work? We are picking up our biggest client ever the end of this week. It is great, but overwhelming. Will I be able to perform? Will I be able to handle the work? I feel like I am playing Tetris right now. Pieces falling haphazardly on other pieces and nothing fits. I am fighting to stay in control. I worry about the things I can’t control. Am I all alone?

The cure for autism, part 9

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It started out the way these things usually do. My contractions were 2 minutes apart. I was due on my birthday and it was that week. The contractions didn’t lead anywhere and neither did the pitocin induced labor. I left the hospital the next day with an empty car seat. The nurses joked on my way out that they would see me later that day. Didn’t happen. 

The following week, I made it in to my appointment. I was now a week overdue and the doctor said it looked like a big baby. They scheduled to induce me again early the next morning. Another day of pitocin induced labor with no results until they broke my water. But they wouldn’t break my water until what seemed like 10 medical students got to feel my cervix. Then started the 2 hours of pushing without the urge to push. The baby never made it into the birth canal and was showing signs of stress. Stop pushing your baby could get stuck in the birth canal, sign these forms, and off to the surgical room. Seventeen years ago today ushered in the birth of Angelique Hope, 8lbs 13 oz. 

My mom said that this baby was going to finally pull Matt out of himself, a new cure for autism. Matt was an uncle for the first time. 

I graduated from college in May, got married in August, and was pregnant by October. After a fruitless job search, I decided to do what I did off and on for my whole life, be Matt’s caregiver this time with Angel. My mom and Matt became obsessed with Angel, the only difference was Matt’s obsession was dark.  Angel grew into a beautiful and happy little girl. I should have seen it coming, but I was blinded by optimism. 

It happened on Angel’s 4th birthday at her party. Angel wanted everyone to watch her dance around and sing. Matt said, “Everybody watch this” and proceeded to grab Angel’s arm and start twisting. Paul and Luke had to struggle to get Matt off of Angel. My mom was screaming not to hurt Matt. Luke took Matt home. Matt muttered to himself for hours, evil laughter and delight that he obeyed whatever voices where telling him to hurt her. Thankfully, Angel was not seriously hurt. 

I had now entered the second most difficult period of my life. After this happened, we decided to cut Matt out of our life for awhile. I couldn’t stand to watch my own children get hurt the way I was. This also cut my mom out of my life because Matt still lived at home and they were always together. For a period of about five years, I lost all support from my family and felt very alone. 

Still no cure.