My son has autism, is non-verbal, with huge sensory issues. His body is not a comfortable place to live in. He is a beautiful and loving child, who I believe is very intelligent. We've spent all our money and re-mortgaged our home in search of a "cure" for our son but nothing has yet been really effective. We have already done pretty much everything out there, but are constantly keeping on top of new alternatives.
Communication is a big issue. He cannot tell me when he has a headache, stomachache, earache, sore throat, or even what symptoms he is experiencing. When he cries in a tone that sounds like pain, it becomes an anxiety ridden process of guessing what is wrong and figuring out how to fix it. Do I need to take him to the ER? Is it just gas? appendicitis? earache? He cannot tell me when he is frightened or has a bad dream. He is one of the toughest and most courageous people I know. I cannot imagine going through life without being able to express myself, my fears, or even ask questions. Because he cannot ask questions, he must figure things out his own way. He still hasn't figured out where the liquid goes when he dumps it onto a mattress or the carpet. It's like a magic trick to him.
At nearly 10 years old, he is able to lead me to the pantry or refrigerator to alert me that he is hungry or thirsty. I am still changing his diapers, although I am hopeful he will learn to use the toilet shortly. I have to get him passed his fear of sitting on something that looks like he could fall in.
Beyond the obvious communication issues, he has nerve twitches making it very difficult for him to sleep. You can tell he is tired, but he is unable to lay still long enough without the muscle/nerve twitching to actually fall asleep. Imagine having the sensation of restless leg syndrome all over your body and being unable to sleep for any length of time - for years.
Being in constant motion, dancing, flapping his hands, squeezing empty bottles and playing with water seems to help him feel better. He has not played with regular toys since he regressed into autism within a week of his 18 month childhood vaccines at the clinic. Birthday and Christmas shopping for him can be very very depressing for me. I wish he would beg me for a toy just once.
He typically sleeps less than 4 hours in any given 24-hour period. Even that sleep is interrupted. He awakens and moves from one place to another restlessly. He often goes for 24 to 30 hours without sleep. He is somehow able to recharge his batteries in a very short period of time. I do not have this advantage, leaving me in a state of chronic sleep deprivation.
Drugging him is not an option. He has been allergic to every antibiotic and pharmaceutical substance we've ever attempted to use. We turned to various forms of alternative medicine but have yet to come up with anything that remains effective in helping him to sleep for longer than a week.
Chronic exhaustion and the short-term memory loss that accompanies sleep deprivation seem like nothing compared to what living in his body must be like.
I get stares and cruel comments when people see me pick him up at his age and carry him in the grocery store. What they don't realize, because he looks like a normal child if his hands aren't flapping or he is isn't making verbal stimming noises, is that I have learned to read his silent queues. I know when he is overwhelmed and about to have a nervous melt down. The hugging deep pressure when I pick him up and hold him soothes his body and nerves, making him more comfortable which allows me to get what I went to the store to buy.
I see people roll their eyes, hear their ignorant opinions about how I should parent my child under their breath - spoken just loudly enough for me to hear. If he is crying, flapping his hands, reaching for something he wants or needs, or flapping around on the floor like a fish out of water in a public place, they do not realize he has no other way to communicate his needs to me.
Usually the cruel comments have to do with their idea that I should somehow get a handle on my child by disciplining him. You cannot discipline autism out of a child. Do they really believe that after 9 years of dealing with this that I've never thought of discipline? I have 3 other children,two in their twenties. Raising my son cannot be compared in any way, shape, or form to raising a child without autism. The difference is like night and day.
Making matters even more intolerable is a difficult marriage. My spouse would rather issue orders drill sergeant style than help out. I need another soldier, not a drill sergeant. He still suffers from the delusion that life should be "normal" and is comparing the state of my house (which currently looks like someone picked it up and shook it - upside down) to his friend's homes, and my children to other typical children who do not have autism. He remains convinced that If I would just turn out the lights at night, my son would sleep. I've done that a thousand times. My son knows where the light switches are and is capable of turning them off and on at will. We already have to shut off the water underneath the kitchen sink every time we use it or he will turn it on and play until we have a flood. The disposal gets unplugged after each use under the sink as well. How normal is this? Do his friends have to do this? Next he will want the electricity shut off at night. Further, he is under the delusion that I sit home and eat bon bons all day. He should put up a camera - I have nothing to hide. I am mom to 4 children - not just one. They all need attention. My spouse is perhaps the biggest stressor I deal with. I've heard the divorce rate for couples with disabled children is above 90%; somehow that no longer surprises me.
I lived in the land of normal for 34 years prior to this. This land and that land are galaxies apart in too many ways to describe.
I also have a beautiful 11-year-old daughter on the autism spectrum. She is very high functioning but nonetheless, It is something I deal with everyday as well. She communicates perfectly and has been a great deal of help with our son. Her issues are entirely different, and much less severe, but are a constant concern for me as well. She thinks everyone is her friend, yet she really doesn't have any friends. She's been invited to a birthday party of a classmate only once in her life in second grade. It's heartbreaking. She is in special ed classes at school but is loving the sixth grade. She is a gifted artist and draws for hours and hours every day. Her artwork and understanding of human emotions more closely resembles someone who has a great deal of life experience, yet she still can't tie her shoes or button buttons well and her handwriting is nearly always a puzzle. She left a note for my husband on a notepad that read "Tm CLD." We understood that Tom had called :)
It's a constant juggling act to keep everything going. People with normal children can usually draw upon their upbringing [what worked or didn't work for their parents.] We don't have that luxury, our parents never dealt with any situation that remotely resembles what we deal with...There is nothing to fall back on experience-wise. We do try to fit in with the rest of society, but sometimes it's impossible. I love the quote "masquerading as a normal person day after day is exhausting" because it fits so well.
Below are pictures of incidents that take place at a fairly regular clip in our house. When I'm cleaning in one room, he is busy creating my next clean up project in another.
I had the audacity to dose off while waiting for a pot of coffee to brew. I had been awake for 27 hours with him at that point. The cabinet with my coffee in it wasn't pushed all the way closed - we have magnetic locks on every cabinet in our home. Below you will find the result of my exhaustion and carelessness. Anyone can survive a week or two of dealing with this if they are determined to prove a point...Try dealing with it for 9 or 10 years with no end in site.
You will see several photos below of the red tempera paint incident. This happened shortly after I suffered a crush injury to my foot. I was on crutches for ten months. I had to buy a hand-held carpet cleaner and clean the rugs on my hands and knees, then get up and carry the Little Green Machine to empty the dirty water tank and refill the carpet cleaning solution numerous times while on crutches. It took me 3 days to clean up what took him only moments to do. Then I discovered that I had to begin again in my son's bedroom. Not a big deal compared to grocery shopping, chasing after my child, cooking, getting children bathed, dressed, driving them to school and bathing myself when I could not walk or stand without crutches. The rest of my memory of that period of time is almost nonexistent. I guess one blocks out or somehow fails to record memories when your body and mind are in complete survival mode.
I dread appointments, meetings, etc. for weeks ahead of time. Everything has to land just perfectly in order to even make it there, never mind being on time. My son is old enough that if he refuses to leave the house at that time, it's nearly impossible. Carrying him with arms and legs flailing about, down the steps, out the door, through the gate, and into the truck takes everything I've got. My vertical blinds are beginning to look like jail cell bars...Ugh
I cannot keep up with the constant mess. It's like shoveling in the middle of a snowstorm. I used to clean around the clock. I'm temporarily on strike. My energy is cyclic. I'll scrub everything with a toothbrush the next time mercury goes retrograde :) I've always hated doing laundry. Actually I'd rather scrub public toilets. Last summer I upgraded to a front-loading washer and dryer thinking that would help...I was wrong.
My son is not currently in school because they lost him. Eight days into this school year, a close friend found him wondering alone on a busy road all by himself several blocks from the school. They were not even aware he was missing so no one was looking for him. This marked the third time they had lost him. The paras at the school are terrific, there just aren't enough of them. They cannot humanly do what is expected of them. I've gone in many times, it's not possible. My son is smart and sneaky. He understands how to sneak off without making a sound when they are dealing with the other children. Now I have to deal with schooling him at home as well. Overwhelming! I don't have time to have a nervous breakdown, so I'll just pick myself up by my bootstraps and keep on keeping on.
Through all of this, I have learned:
1) To be stronger than I ever dreamed I could be.
2) To trust my own gut instinct or mother's intuition.
3) What is really important and what's really just a "little thing" in life.
4) Who my true friends are.
5) That I can handle just about anything that life throws at me.
6) That I have more patience, tolerance, understanding, and courage than I ever thought I was capable of.
7) That doctors don't always know best, experts aren't necessarily experts, and ultimately I am responsible for my own health and that of my family.
8) That mainstream medicine can do more harm than good and isn't necessarily more advanced than ancient remedies.
9) That I cannot necessarily believe the news or trust the government...They lie and mislead us more often than we get the truth.
10) Never to take anything for granted.
11) To find joy and happiness in mundane everyday things.
12) That hearty laughter heals the soul.
13) That I like to be with real people who are straight shooters, and not pretending to be something or someone other than themselves.
14) That I really don't care what others think about me with the exception of a select few close and brutally honest friends - who are not afraid to ask what I did to piss off my hair stylist if I get a bad haircut.
15) That I really don't want to be 21 again!
16) To appreciate the little miracles and advancements other moms with normal kids take for granted.
I'm not the same person I was prior to my children's diagnoses. That's a good thing. I wouldn't trade who I've become. I wish I would never have heard the word autism, but I know this disease is not strong enough to shatter my hope, silence my courage, invade my soul, or conquer my spirit. I will continue the fight for my children's health, happiness, education, and their acceptance in the world.