A Day In The Life - Autism

Hello,

My name (here) is Zen. And I am the father of a beautiful 5 year old girl named Abbie. Abbie has autism, and with intense ABA and speech therapy, she is just now beginning to say words. Not many, but she is beginning....and they are music to my ears.

Of course like most of us parents, the beginning of this journey was maddening. Then the course of the journey became like a nightmare. At its peaks, I would often say to myself and my mother (whom I can tell anything) that Stephen King couldn't dream up this kind of horror. It is during those times that I feel for anyone at that stage of the journey. It's before you've gotten enough help (doctor, therapy and therapists, various other things only learned by traveling this horrible path) that the journey seems so bad.

It began with Abbie not talking at about the time when other moms were promptly reporting Abbie's peers were starting to talk. You want to act like these things don't make you compare and think; but this is denial. It is human nature to compare. Abbie also did not care for others around her; well in fact, she didn't seem to notice them or us. And her play was very different. She had little figurines, be it the barney characters (hard plastic types) or pokemon of her big sisters. She would have a strange play that consisted of lining them up, the same way every time. Taking one down, bouncing it on a window sill or carpet almost like tapping, and then putting it back into formation and then going to the next in line, and repeating this sequence. Over and over and over. Abbie was also showing something that was the beginning of something very difficult and probably the most troubling. Abbie was not happy a lot of the time. Much an understatement; Abbie would grow distraught very, very easily. This would then lead to crying; tears streaming so much her shirt would be wet and face bathed in tears. And her crying would more resemble screaming. With tantrums from a typical child whatever the initial cause, you could expect the tantrum to wane after at its worst twenty minutes? Not with Abbie. This could go on for hours. And slowly we moved towards the most isolated, darkest and emotionally perilous part of the trail (or path). The household walked on eggshells. Still hard for me, our older child, a six year old daughter, gentle and beautiful had to follow the "Alice in Wonderland" bizarre rules of the household. Abbie's mood and calmness ruled the household. Everything tilted toward that objective. Anything to avoid a hurricane level "storm". Further maddening for a parent, Abbie would not let you comfort her. Just a hug to soothe and calm was roughly pushed aside. Sometimes it seemed to only add fuel to the fire; and lengthen the storm. Patience and love and good will on the worst of nights could lead to madness; turn two caring and frustrated parents toward one another with their frustration since you couldn't turn it on the child. Thank God, most nights were simply endured without much undeserved and misdirected anger and frustration. Abbie's mother was the sole comforter for her. And very quickly this wore her down. It would anybody. But the human being is tougher than first glance; and you keep on breathing, and waking up and doing it again and again and again. We slowly would learn small things that would set off these storms and would go to extremes to avoid them. Like walking on eggshells, and also Tap Dancing in a minefield....never knowing when you were going to accidentally wander into another bewildering trigger that resulted in a meltdown. At the center a beautiful little girl; without the power to speak or communicate or understand your words. But tormented inside; and as we later learned scared to death and filled with exponentially increasing anxiety and fear. Mom became a prisoner to her youngest, and quickly her own personal interests faded away. I could spend hours talking about this part of the road. We spent almost two years here without anyone's help. Doing a lot of self learning about what we knew deep down this was; but paralyzed and frozen from taking further action. So many nights my oldest daughter would go to sleep with screams and infatigable crying filling our house. This was the worst. And our hearts broke sometimes minute by minute. Our minds weren't that well off either.

Let me travel down the road a bit. Abbie had an ear infection and we took her to see our family doctor about the ear. He performed some preliminary doctor things (reflexes, etc, etc) and looked in the ear.....It took all three of us to hold her down for him to just 'peek' into her ear. We were ready for comment about the ear when he smashed the glass of denial. Have you ever thought that Abbie might be autistic? Of course we had. But we had not wanted to face it. Not admit what we had been reading had no cure. Almost within seconds, we were sobbing wrecks, and the doctor about didn't know how to handle it. He had just broken the glass. To move down the road this started things moving. We went to a Pediatric Neurologist (really impressive title). He had an EEG run on Abbie (no sedation...took 3 people to hold this poor child down until she passed out from fear and fatigue). EEG came back, no seizures are causing this. Still this doctor would not commit to anything except roping us in for regular visits; each of which he would ride the fence on diagnosis; grow aggravated at questions (a mortal sin in my opinion for an MD who deals with children), and when I asked him a real serious question on the fourth visit, he replied that would be a question better asked for someone who specializes in autism. Well, his average fifteen minutes were up, he hated eye contact at all times anyway, he was off. So were we. We never went back to that "doctor'. We next found a doctor who did specialize exclusively in autism. From a reputable medical facility, we placed all our hopes with her. She changed our lives. Also about this time enter our first ABA specialist. Recommended by the speech therapist whom we had started taking Abbie to (first six months she fought like a banshee; broke my heart through the one way mirror....these days, she loves to go. If I were a millionaire that speech therapist who put up with being kicked, head butted and everything else wouldn't have to work ever again. She deserves a special mansion in heaven....there are some beautiful people out there and I recommend to any of you...just keep looking until you find them.) Doctor told us her reactions were fear, pure anxiety. Due to inability to communicate or understand language, she does not know what is going to happen the next minute!! We never dreamed. Therefore, our path has a lot of light now.

Last paragraph!!! We're on a path that is much wider and happier. With medication to lower the anxiety, weekly ABA therapy and Speech therapy, and day to day minute to minute love we have a happy child who has much less anxiety; sleeps through the night and is beginning to use and understand speech! Our mental health as parents, as a couple, and for my oldest daughter is coming closer to normal as it has been in what seems a lifetime. Challenges? Still? Oh yes. And I can't end this story without telling you my wife initiated and DID THIS. She went to all the speech sessions, all the ABA sessions, (I worked at a job) But she worked for our daughter!!! I owe her everything. But at many points along that road, we to say the least weren't always the best of friends; nor did we have the energy for civility at times. Lack of sleep can do that to a person. So, I apologize. This was many days in the life fast forwarded. We are still not in the clear. I don't think my daughter will be able to go to kindergarten next year. The timetable has been changed to a much longer time frame. But that's ok. We can see the budding on the rose. And this is a beautiful flower. We have to continue to be patient, loving gardeners. Tonight before bed, I went in my daughters room (we have no more tantrums ...maybe one a month now!!!!!) she was getting ready to escort me out of her room; which she prefers usually!! And with good humor, I go. but before I left, I turned back and with my hand I held it to my mouth and I very loudly went "MMMMMMM MUUUHHHH" And blew her a kiss. She looked ahead at her video for a second, then looked me in the eye and with her tiny hand held it to her lips and said, "MMMMMMMM MUUUHH!!" and threw her hand toward me.

**Wherever you are on this road. Never give up. Never. Get help, don't try to do it yourself. But remember that the path is not always so thin and dark and sometimes maddening. I've seen it and lived it A day in the Life one at a time. See ya on down the road.

Sincerely,

Zen Rookie

Where am I?

I am at home, most likely doing the same thing you do--advocating for appropriate early intervention, and researching, researching, researching, sometimes into the wee hours of the morning trying to make sure I am making the right choices, kind and humane choices that will maximize every moment of the rapidly closing window of opportunity where we are told early intervention will remain effective.

I am here, doing much the same as you do there, where your life and the fruit of your love lives.

I awake early, rising at five a.m. to restock two therapy rooms with supplies, tweak lesson plans, rearrange token boards, always upping the expectations for my sons as they show they are capable. With that done, I check my stock of picture exchange icons because if I lose them, I am effectively stealing what language my oldest son has away from him. You see, he talks with pictures most of the time. And this makes me feel so joyful.

Dawn tickles the edges of the horizon now. Then I wake my babies and herd them off to their respective destinations--two into therapy rooms and two off to school. Four children, four different lives. I often dream that I've forgotten where one of them is!

Late morning and early afternoon finds me engaged in the mindless, quiet rhythm that syncopates the mindless nurturing tasks that all mothers share: sorting laundry, making beds, swiping away the evidence of yesterday's handprints, and feeling just a bit wistful that the day will come where those handprints aren't so small, or so numerous.

It is late afternoon now, and my, how the the pace picks up. Where does the day go?

It's time to run meet the schoolbus, and gather my daughter into an embrace that tells her how much I've missed her chattering presence here today. Then, rushing home, for I must meet the second round of therapists, fill them in on the day's progress, prepare snacks, hug my sons close and hard, and sadly send them back to their various tasks for the day.

Early evening comes and my boys are once again mine. They re-enter the family fold in a flurry of hyperactivity, because they've worked so hard. Its time to burn off steam, so we go outside to swing, slide, bounce on the trampoline and do all those things that children do. Its their time to be little, and my time to relish motherhood.

You see, its impossible to tell there is anything wrong with a child who is swinging so high that his feet seem to brush the clouds.

Yes, this is one of my favorite parts of the day. I live for such moments because they tell me someday these children who have come into my care will grow wings and fly free of the carefully sheltered nest I've built for them here.

Darkness seeps across the sky, signalling to my boys that the day is through. I dip them each in a strawberry scented tub of bubbles, and inhale the perfect scent of their skin as I towel them off and pull them into their pajamas. I lay them in their beds, swaddled tight because they love the feeling of deep pressure.

One by one, I kiss the tops of their shaggy, golden heads and tell each of them how wonderfully blessed I am to have them in my life.

I don't know if they truly understand the specifics of my words, but I have to believe that their fierce hugs are their acknowledgement that they share the intent of my message.

Finally, I steal a bit of alone time with my daughters before I send them off to their dreams. I wrap myself in the music of their easy chatter and on the evenings when I think I'm too tired to listen, I try to remember as the word mommy rolls off the girl's tongues for the thousandth time today how thankful I should feel for the music of their voices. Every word is a blessing so easily taken for granted.

Finally, the gentle snores of my sleeping children fills these old walls with a sound that I know I will long for in my old age, a sweet song that tells me all is well, all my loved ones are safe.

And then, it is my time. I turn on my computer. Here I struggle to put onto my monitor the words that might comfort other mothers who have walked the trail that I look back on, so much older, hopefully so wiser for the wear.

It is only when I do this that I come to fully understand the awesome obstacle that communications can present to children who struggle with language. Because when I write, I dig for every word, its like an excavation, really.

I am frantic that maybe I'm not choosing the right noun, verb, or adjective to carry the intent of my message to some other mother like me, who is out there, perhaps crying because she feels she might not make it through to another day, and needs someone who can tell her, "oh, but you can...and you will."

This is where I am. See, it isn't so different from where you are. We have both known the kind of love that doesn't always come back to us in hugs and kisses, and in accepting this, we are bound together in spirit.

Our hearts will never beat alone as long as we know there are others who go where we have been, and have found ways to flourish there.

Liane Gentry Skye
Author of "Turn Around, Bright Eyes, Snapshots from a Voyage into Talking With Pictures"

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