# 405 Tuesday, January 8, 2007 - WHY WE FIGHT: One Day Raising a Child with Autism
Every caring parent has worried, one time or another: what if we died tonight? Who would protect our children, and provide for all their special needs, if we were gone?
Nicki Pecchenino is a fine writer, (I am encouraging her to write a book; you will see why in a moment) and a friend of stem cell research.
She is also the mother of an autistic child.
Prior to meeting Nicki, my only contact with autism was the movie RAINMAN, where Dustin Hoffman’s portrayal brought the condition to national awareness.
The character in RAINMAN was based on an autistic man (actually his brother, who could imitate the symptoms on demand, so the actor could study and reproduce his behaviors) said to be very high-functioning.
The movie was funnyâ€"“I am an excellent driver†he would say as he repeatedly bumped the car along at five miles an hour-- and terrifying.
It seemed impossible to deal with him. Everything he wanted was just so extremely important, and there was no compromising. For instance, every day, he had to watch one program, Judge Wapner, and as the time of the program grew closer, if he was not near a TV, he would become increasingly agitated, until he could (unless given his way) explode in a shrieking screaming frenzy, out of control, dangerous to himself and others.
Tom Cruise’s character was suddenly faced with the challenge of providing for, and protecting, this extraordinarily difficult individual. At the end of the movie, he realizes, he cannot do it. Dustin Hoffman returns to a nice friendly institution (obviously expensive) and we the audience go back to our normal life, relieved it is not our problem.
But what would it be like, if the movie did not end, and we had that responsibility?
At least, autism doesn’t happen to very many families, does it?
Here’s Nicki Pecchenino:
“Once considered a rare disorder, today autism is estimated to affect 1 in every 150 children, 1 in 84 boys…â€
I asked Ms. Pecchenino to write about just one day in the life of raising an autistic child.
Here she is.
“Today begins at 4 a.m. when 11-year-old Christopher lands on top of me, wide awake, after only 5 hours of sleep. I am so tired, having only been asleep myself about four hours. I decide to give him more sleeping medication, knowing it will take him off schedule as he will sleep later. But, I have to get more sleep and so does he. His sleep cycles have never been normal and getting to school on time has become something I have had to give up on. His health is more important than an hour’s worth of school.
At 7 a.m., it is time for me to make his special breakfast. He cannot digest anything with gluten, dairy or soy, so I do a lot of cooking, special ordering products from both stores and online… gluten/dairy-
He is still sleeping at 8, so I take these precious moments of quiet to turn on some of my music and get the laundry started and attempt to do some medical research online. But, I realize I must also pack his snack and get extra clothes and diapers ready because today is horse riding lesson day.
We will go to an equestrian center vendorized by our regional center and they will pay for his lessons. The staff is inadequately trained, and I must teach them what he is attempting to convey, his sensory needs, and how to help him...
(But first there are some other chores…DR)
10:00 a.m. â€" I help him to get dressed. “Left leg, Christopher,†I say, as he tries to put both legs into one pant leg. “Pull up. Good boy!†He cannot button, so I search for weeks at a time for pants with elastic waists. Now for shirt. Great, he puts his arms up and helps himself. “Good Boy!†He cannot put on socks, and I am in too much of a hurry to do a lesson this morning, so I enable him. Guilt City, once again. Shoes, come on do it this time, baby, I think. He gets the shoe, and gets it on. Yes!! One more, sweetie, I think, as I stand, trying to remain patient. He does it…
I decide to skip brushing his teeth this time as he is so orally defensive, and is in a good mood. Need to have a pleasant morning without a struggle. He now weighs 112 and I am 4’ 11â€, 97 lbs. so he is learning he can overpower me. Thank God he is not aggressive like so many on the spectrum. In fact, he is a love bucket in all ways. So far….puberty hitting soon.
10:30 a.m. We head out, extra set of pants and underwear and wipies and food and water all packed. He is cognitively about 2-3 years of age, and still needs to wear diapers at night and during the long rides if I cannot make stops. He drinks gallons of water, the reason for which the doctors have not been able to determine, but we moms know it is the body’s method for flushing out toxins and food and environmental allergens.
We make it to the dry cleaners where he plays with their Christmas decorations, almost pulling them all down, so I have to hold his hand and attempt to sign the credit card slip and gather up my dry-cleaning with the other.
He needs to use the bathroom, so we head next door to the deli, where they all know us, and we use their facilities. He has to stop by the tea-making machine to watch the bubbles and then races down the aisles between people eating to get to the ice machine. I apologize along the way, as I drop my purse and he kicks off his shoes. Many children with autism cannot tolerate clothing or shoes, and he is no exception. If I had a nickel for each time I have had to put his shoes back on, I could almost fund the entire California stem cell program!
We depart the deli and head to the drugstore, where again, we must use the facilities.
By the time we reach the bank, he and I are laughing about our singing. Music is the conduit by which I reach into the world of autism. He loves me to sing to him, so I do it constantly. I look like a fool in the grocery store, but I have long since let anyone’s glares and stares sink in. If I make him happy, that is all that matters. The bank personnel are generous with me and allow us to let him use the bathroom.
It is a long (45 minute) drive to the therapeutic center, but it is the only horse stable who will take children who are developmentally disabled. I have called at least five, and all have their excuses: liability insurance won’t cover a child with autism (they are almost always quite physically fit), don’t know enough and don’t have the time to learn, must charge $60/hr. to cover their costs and don’t have adequate staff. I have heard all of it.
We finally head to horse riding lessons, but by now I am on the cell phone with the Regional Center psychologist. She is my sounding board and professional mentor, along with two other moms who mentor me. I also mentor. We are a strong network in a very isolated world, so we hang onto one another for dear life.
The teachers are not ready and he is beginning to tantrum. Riding the horse is such a joyful experience for him. They don’t put a helmet on him, and I must remind them. They tell me I can go take a walk for about 30 minutes, but I stay handy, in case of emergency.
I call back the psychologist and we continue our conversation until interrupted by someone screaming at me, “Come get Christopher! He will not stay on the horse and you need to take him home.†I march over and am livid. What is the problem? Well, he is giddy and wants to lie backwards. Of course, he does, I realize instantly, that is a blood rush. So much education is needed…
I pick him up and tell them to forget it. Instead, I take him on a walk around the grounds.
The reason for his giddiness is soon revealed: He needs to have a bowel movement.
Children with autism often get almost an LSD high prior to defecating. It is a peptide issue... I must allow him to pull down his pants in the middle of a field. So, nothing new…..he has had to urinate and defecate in places I can’t begin to count, often with me holding my breath that I am not arrested.
We find ourselves in a spectacular setting, where the ocean lies out for miles beyond the farm fields. As I hold onto to his growing hands tightly, for a brief moment I am reminded of the last vacation I took, some twelve years ago, to Maui. I hold my breath and allow myself for two seconds to live in the past. I feel better and we go along, singing Old MacDonald. He is as beautiful as this place, full of life and a smile that could get him elected to any office in the land. Deep breath, hold back the tears, and keep singing.
So, we spend a little time feeding the cows and I struggle to get language out of him. He is beginning to understand that animals are real, not just on videos.
He tells me he wants water, so back to the car, where I give him his cereal and water and buckle him in and try to locate a teacher or anyone who can convey a message to the instructor about the need to toilet him when he gets giddy. I cannot leave him alone, so I end up telling one of their teenage volunteers. I gobble a sandwich and down it with a Diet Coke and we head off to take a walk at the beach, about an hour’s drive away.
The ocean mesmerizes him. He would swim to Hawaii, if I let go, so I no longer take him in. I leave that adventure for the younger respite workers. We look out over the Pacific Ocean at Lighthouse Point and he just fixates on the surfers. I wonder out loud, “What are you thinking, my son?†He says, “surfing.†Yes!!
He seems tired and doesn’t want to walk, but I know if I don’t get him worn out, he will never go to bed on time, which is 10:30 p.m. I provide him with language and he chooses “hungry.†So, we leave this peaceful place and head back home. I scramble to get him his gluten-free lunch, but by this time, he has come alive and is jumping on his indoor trampoline like a person on speed. He refuses lunch, and I am wasted, so I ask him if he wants the hot tub. He races out to it, just like he needed to jump into the Pacific. The rush of water over his body gives him such sensory satisfaction. I often wonder if children on the spectrum were meant to be dolphins, communicating in noises and living peaceful lives in the water that soothes them so.
I do the dishes, get things started for dinner and collapse.
I realize I have fallen asleep! It is only a moment, but I awaken in a panic….is he OK? Has he had a seizure? I jump up, only to find he is still leaping in and out of the hot tub, joyful and spirited as ever.
I feel chest pain, and sit down and collect myself for the next several hours of bathing him, helping him to learn to wipe with a small towel, teaching him how to put on deodorant, pull up a diaper, eat sitting at the table, using a fork, putting his dishes in the sink, wiping after using the toilet……the care is constant, teaching is for life.
I try to get a bite to eat, but he begins to cry. He wants something, but I can’t tell what it is. I get out the pictures, but he still can’t tell me.
I hold him and sing to him. He calms down a bit and lies on the couch. I put in a video so I can get some nourishment, jumping up and down at least five times, as he is still trying to tell me he is uncomfortable.
I hear a crash and run to the family room. He has taken his rice milk and poured it all over the floor to get to the ice cubes in the glass. I am livid and tired, and scream at him and feel guilty all over again for not being in the room each minute.
Oh, how I want to read the newspaper and finish my dinner. But, I must teach him to clean up his messes, so hand-over-hand, we wipe. He is not happy about it, but knows Mom is mad.
I finally get my cold dinner back in the microwave and finish gobbling whatever it was I was eating. Time to start making muffins for tomorrow. I ask him to help me. He tries to use both hands, one to hold the bowl, one to crack the egg, but cannot do it. So, I hold the bowl, and he cracks the eggs. I beg him to label the items…oil, milk, flour….he knows these words, so why won’t he use his language today. It is slipping away again……the tide of autism…in and out. So, we finish and he tries to stir, but loses interest and just wants to eat the batter with his hands. It goes everywhere. I wash him and the mess and put the muffins in.
I head up to the computer to check if a researcher has gotten back to me, only to find he has opened the oven door. Thankfully, he feels the heat and does not touch anything. He sometimes opens it and urinates into it. I don’t know why….but it is getting to be less of an occurrence, so I am pleased….you take progress when you can and don’t always understand.
I finally sit down with him to try to get him to “talk†about pictures in a magazine. He is bored and just wants his TV videos. I am relentless and make him go through at least 20 pages before I will cave in, although I just want to be alone.
I get upstairs, collapse and turn on the news. He wants water….back downstairs to find he has stood up to pee and there is urine all around the toilet. I get out the mop and clean and tell him “SIT!â€
I finally feel as though I can do no more today, and tell him it is time to go upstairs. He is tired, but stubborn, so I have to use a firm voice.
Tonight I need to cut his toenails. This could not have happened three years ago. His teachers have “desensitized†him, and he now allows me to cut his fingernails and toenails. I am eternally grateful. No one can raise a severely impacted child without help from qualified, dedicated souls like the ones at my child’s school, The Morgan Autism Center, a non-public school, established before autism even had a diagnosis. They are saints and all of them are my family.
The worst is yet to come: Brushing teeth. Oh, he is SO orally defensive. He is bigger than me now, and bolts and laughs as he jumps on the bed and rolls and bounces. I drag him back, lock the door and hold him against the wall. He allows me to brush, but it is a long struggle.
Now, it is time to go put on a diaper and get into bed. He knows the routine and complies. I turn on his nighttime videos and cover him and go and brush my teeth and bring in water and supplies for the next day and throw some more laundry in.
I give him his sleeping medication and he tells me, “Go away.†I gladly do….need some adult time. So, I change his diapers twice more and he finally drifts off and I look at him and think to myself, as I have so many nights, “Does he dream? Can he talk in his dreams? Does he understand other people in his dreams?â€
In reality, they are my dreams for him. We must find a way to use stem cell therapies, as they are the real hope for our children... I will keep my advocacy efforts up until my last breath.
I am one of the “lucky†ones. My child is robust and happy, although he does have his share of immunological issues and severe food intolerances and gastrointestinal problems.
He can only talk in one and two word phrases for the most part, but half of all children with autism NEVER utter a word, so I am lucky. I am also among those fortunate to have savings enough to stay home with him. When he is not with me I worry, knowing that he may not be able to express his needs, or bolt into traffic, or be in pain and it will be misinterpreted as “severe†behaviors. For mothers who attempt to work outside of the home, it can be deadly.
His receptive language is extremely limited, so I must use my verbal communication with him in very brief, repetitive statements, mostly commands. I must sound like a very wicked mother at times to those listening to me out in the public.
But, again, I am lucky he can understand some of what I attempt to convey. I wish I had learned sign language when he was first diagnosed. He seems to understand, but not very many people can sign to him in his current classroom. Guilt is my middle name.
But I keep guilt and self-pity at bay with my stem cell advocacy work. I am one of three mothers in the area battling for autism to be given a higher priority in the stem cell research community. We will continue to spend our every free moment attempting to get the attention of the neuroscientists to listen to our reasons why stem cell therapy seems plausible. We can’t take the standard line of “We don’t know what causes autism,†any longer. (NOTE: anyone who would like to cooperate with Nicki and her friends should write to her at nickipeck@sbcglobal
As I write this at 10:30 p.m. on a Saturday night, I think how much I miss having something to look forward to. I am beginning to train yet another person who will, hopefully, be able to learn to take my son out so I can do what most parents do WITH their childrenâ€"Christmas shopping, baking, gardening, cleaning and, if I am really lucky, riding my bike a couple of miles. My son cannot ride a bike, even though he is 11 years old. It simply doesn’t interest him, just like all the thousands of dollars worth of toys I have purchased, only to give away.
I look at this handsome little fellow and kiss him on the forehead as he sleeps. I hope for a better tomorrow, even though I know it will most likely be a repeat performance of today.
And then I think:
“Please, God, don’t let me die tonight.â€
Don Reed
www.stemcellbattles
Don C. Reed is co-chair (with Karen Miner) of Californians for Cures, and writes for their web blog, www.stemcellbattles
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