I am the mother of two daughters (age twenty-eight and eleven) and an eleven-year-old son, diagnosed with autism. My son has come a long way in the past few years. As it stands, it is still a constant and treacherous uphill battle.
I live in constant hypervigilant mode twenty-four hours a day, seven days a week and I have for the last eleven years. My son needs constant supervision and
that's what I provide, plus as much love as I can give him and my other children.
I cannot have my two grandsons here without my daughter and her husband guarding them from my son's things which cannot be moved without a four-hour screaming trauma that will leave everyone's nerves shattered, destroyed, annihilated, etc. Guests who have had the unfortunate experience of being present for one of my sons "come-apart" episodes complete with glass-shattering screaming that lasts for hours, have never been the same ever since. I never see most of them ever again.
We once had to keep our Christmas Tree up for two years, because my son would snap out if we tried to remove it. We don't move any of my sons obsessions without a complete traumatic mind boggling melt down, that could last forever and often includes screaming and banging his head. He has put his head through walls in the past, and bashed in many VCRs with his head. He also bashed his head nearly all the way through a bus window, breaking it and causing the driver to lose her mind.
Most families with autistic children try to keep plenty of VCR's/DVD players on hand because of the hell you will live through if it should malfunction. This "hell" lasts until the minute you replace it, plug it in and put in the same movie that was in it when the prior unit broke. If the prior movie/DVD is still stuck in the old machine, you're pretty much fucked. I tried to think of something civil to use instead of that word, but there isn't one that describes it better.
About the movies: He will rewind, fast forward, or stare at one screen shot a time and will memorize all credits, directors, actors, and the whole movie even watching it in segments. He can somehow do this even if he watches the segments in random order.
I will eventually post audio of the screaming that we endure during his meltdowns. This occurs whenever my son becomes overstimulated for any reason, or can't have a fucking pizza. Come back often to check for that! Can you not wait? lol I HATE PIZZA!!!
He wore diapers until he was seven and half years old and my younger daughter tried to compete but luckily only made it to four. I have been literally locked away for up to eighteen months at a time and couldn't take my son out for a walk until he was three and half. I was so nervous I cried for days at a time. Tears streaming from my eyes, with a forced smile on my face to keep from upsetting my son and daughter further.
Thankfully, after being tossed out for irresponsibility numerous times, my husband is now managing to pick up a tiny bit of the slack here. I normally got one hour to contemplate sleep between both kids schedules. Currently I can wake my husband up to get to work and take my daughter to school. Once they leave the house, I can finally get my son to bed. It normally takes him a couple hours to fall asleep and my presence in his room is required. I lay near the door so he doesn't wake up and leave or decide to reenact some movie down the street. I literally only have enough energy for my children and that is pushing it to the limit. As far as having a normal relationship, that is a dream of the past, and I don't think about it until provoked
into defending myself. Must be nice to have enough time to get pissed
off at something that isn't even an option for me.
While my son and I are up all night, I am enrolled in college courses online. I completed my 2-year course in hypnotherapy six months ago and am now a certified hypnotherapist or certifiable (take your pick). I also recently received my certification in graphology. Every hour of college I have completed was gained between the hours of 2:00 and 7:00 am, All tutoring sessions and tests are required to be done in the daytime hours, leaving me in a constant state of sleep deprivation. The interruptions and never-ending traumatic incidents would probably discourage a lot of people. I may live in a strange land, but I still have to keep my mind busy, even if I can't get out of my own way because of the situation I deal with here.
One of my son's biggest issues is obsessive compulsive disorder (OCD). Hunting down things my son obesses about takes a large chunk of my time. It is as if his mind gets stuck in a grove and cannot get out once it's stuck there. He doesn't eat any of the food that we eat. I have to cook in the day for the family and cook throughout the night for my son. I have to force myself to eat a lot of the time because I am so sick of dealing with his food issues, i.e. cutting up all of his food because he doesn't bite properly into anything.
Dental visits for my son require a hospital visit because he needs to be anesthetized. This also involves a trip to another town. Every time my son needs dental work, I come about as close to a nervous breakdown as a person can get without actually having one. Come to think of it, I come about that close everyday between the lack of sleep and catering to my son's OCD issues.
I am forever attempting to track down costume pieces and accessories, musical instruments, etc. for my son. He loves to play and dress like his favorite movie characters, having already memorized all their lines. I had to come up with a secret service type jacket recently. He's on a James Bond kick which could last for weeks or many months. He's always on a kick of some type. Not only must I obtain these items, but I also must keep track of every single item that is his and know where it is at all times to avoid major trauma. Unfortunately and fortunately he has a photographic memory, and everything must be kept in it's place. That place is wherever he decides it goes. If something has been moved by someone else, I'm sunk. unless I can find it quickly. It becomes more difficult to find things the louder his frustration and screaming gets. I'm looking, my heart racing (knowing what will surely happen) if I cannot locate the item quickly.
You cannot give my son anything that he believes belongs to someone else, even if they gave it to him. If he knows it was their's first, it will take him months and months to even touch it and then I'm not allowed to look at him when he is touching it (he must ease into this). He still somehow believes it's theirs and has a really hard time with that.
My son has always called my husband and me by our first names for the most part. Apparently he thinks "mom" and "dad" aren't names, but rather job descriptions. . . We are inclined to agree. LOL He also periodically assigns us new names. Sometimes he tells me I'm Alice, Ivy, sweet potato, Coco Lee (?) or Mrs. Applebottom (not our last name) and will call me that for days or weeks. My husband has been called Mr. Potato Head, William (not his first name), Robert (also not his name). He also sometimes call us by animal names, i.e. puppy, kitten, cat, pig, dog, rabbit, etc. Once he has assigned these names to us, we are called that by him until he announces that he will once again be calling us by our real first names. If he changes my husband's name and mine, he must also assign our daughter and himself a different name. My name (of the day/week) remains the only one that can be changed alone, without assigning everyone else a different name for that day, week, or month. Perpetual weirdness!
While battling for my son's health, mind, spirit, education, and happiness for the last eleven years, I have acquired adrenal fatigue, hyperthyroidism, low blood sugar, and panic attacks; and those are just the issues I'm aware of. At least I know I won't die because it isn't an option. I MUST LIVE to care for my son :) Every move I make for the better part of eleven years revolves solely around my son, (and daughter) their schedule, and their needs. Everything I do is to help them in some way, whether it be the choice of online college classes I take or the research I do because doctors currently have virtually no effective answers for those with autism. This is not a choice I have made, it simply is necessary for his safety.
I did manage to set up some "normal space" in our home for my daughter, although it doesn't save her from the stomping and screaming when my son melts down. Both my daughters are very compassionate and loving towards him and to others , They love him very much and he can do no wrong in their eyes. They understand that he did not choose to live like this and cannot help it. They understand that you cannot discipline an autistic child into normalcy.
We are truly fortunate for some of the things we have gained by having him in our family. We appreciate every word he utters because he couldn't talk until I detoxed his body homeopathically of all the poisonous vaccines he received as an infant. I traded what I thought was immunity to diseases, which largely went the way of the dinosaur when indoor heating, plumbing, and sanitation in general improved, for what appears to be a life long chronic illness and a life sentence if I cannot figure this out. No one else is looking for the cure for my son - all he has is me. Not much pressure on me is there?
Hobbies? What hobbies? I long since forgot what it was that I really enjoyed doing before my son was diagnosed. If I was offered a Hawaiian vacation or a nap, I'd take the nap - hands down with no second thoughts. The vacation would be too much stress to even contemplate.
We still cannot say certain words in front of my son, because we don't want to send him over the edge. It took me months to get my son to agree to remove the Pepsi cans that he put all over the counter (he was making a Pepsi factory he said. ) You will see a photo below of the brown box I packed the empty Pepsi cans into. The box still sits in my kitchen months later. He still won't let me move the box but at least they are no longer in my way. This is only the tip of the strange otherworldly iceberg around here.
I would like to let others know, however, that he is the sweetest, most lovable. intelligent child, He has never attended school and had always been home schooled. He is extremely talented musically and plays a number of instruments even though he has never had a music lesson. My son can read, type faster than most adults, and can find and do just about anything on a computer. He types with perfect spelling, capitalization, and punctuation.
He is a real person. He loves a lot of the same things other kids love except he cannot go to a party alone, ride his bike alone, or anything else. He cannot even go play in the yard alone at eleven years old. Fortunately, in the town I live in, people have, for the most part. been very kind to my children and I. I am extremely thankful for that.
If I ever act like I'm not really there (if anyone reading this runs into me) please know it isn't personal. I'm just permanently stunned by this life. I only have one friend really in my life and that is my best friend, who also lives in sheer hell with an autistic son, a daughter who also falls somewhere on the spectrum, and three older children, and that's the good part LOL . We do not see each other. She lives in another state, yet she is my saving grace and I love her :)