I have not been truthful with you for almost one year now. It’s been a heavy burden tocarry. If nothing, else a year has gone by and a life-changing development like ours warrants full disclosure to those who care enough to follow us on this blog.
April is Autism Speaks month, and - the sad irony is not lost on me- it was in April one year ago that we began the heart-breaking process of having Gus evaluated for a series of tell-tale signs of this puzzling and utterly confounding disorder.
By June – after a gut-wrenching, stressful and at times humiliating battery of tests - ¬we had an affirmative diagnosis and since then Gus has become a busy little boy with an individual education plan that grants him a special education spot in a 5-day morning preschool, as well as occupational and speech therapy.
Autism is a neurological disorder affecting boys and to a growing degree girls. It presents itself with a variety of symptoms at the age of 2 to 3. Though first described in the 1940s and heavily researched and popularized in the past 10 years, the exact causes of Autism are not known and at this point are believed to be a combination of genetic abnormalities and environmental triggers. It affects a child’s ability to function in our society, manifesting itself in a brain and nervous system that has trouble sorting, decoding and processing the millions of sensory messages we face in every instance of our daily lives.
At age 3, Gus has tested at the high-functioning end of the spectrum that is Aspergers-Autism. He will be re-tested throughout his school career and may move up or down on the spectrum.
Gus has many of the tell-tale markers and is far off the range for neuro-normal functioning children at his age: He has some trouble with eye-contact, pronounced echolalia (endless repeat of memorized phrases) amazing rote memory, a stunted ability to report or answer questions spontaneously, as well as a tendency to wanting to be alone or play alone, instead of playing alongside or with others.
As for the good news, Gus also displays some innate skills and early achievements that other kids with Autism struggle with their entire lives. He loves being affectionate, he is not shy and enjoys telling jokes he has memorized. He is a champ at dealing with unforeseeable events and he also tests at the level of a 5-year-old when it comes to physical mile markers, not suffering from loss of balance or fine/gross motor disabilities. He loves animals, the outdoors and learning new skills, which he masters with an uncanny and un-childlike tenacity. Most of all, he is verbal – though he talks only in tested phrases and haltingly, he talks and likes to talk - I’m grateful to God for his words every day.
For the first six months on this sad path, I didn’t sleep more than 4 hours at a time. Thoughts of a lonely, peculiar, young man, named Gus, forming in my mind. Feeling jealous of everyone else’s child, feeling guilty for wanting to change my child, feeling sad – simply very sad.
I now sleep a little more reliably with the help of some melatonin. The trick is to stay asleep, if I wake up in the middle of the night I’ve lost the fight and spend a day feeling weepy and vulnerable, and worried that I’m a lousy mom.
I run really early after those nights, seeking relief in the mindless pounding of my legs, letting my mind wander to happier days and hoping that the adrenaline will carry me for at least part of the day.
In the past 12 months, I have gone through too many moments of humiliation to count. One of the worst came when a doctor, though decorated with many impressive degrees and distinctions, but also outfitted with an amazingly apropos lack of bedside manners, informed me that I should have my genes mapped if we planned to have more children – on the way home I could feel the radio-active sludge that is my genetic material course around my reproductive system. I’m still working through that one, all the while wondering what could have possibly possessed that man to say something so insensitive to parents who have just found out their child will have a life-long disability.
I have trouble reading books or watching TV shows or movies featuring individuals with Autism. There is a long reading list that has been recommended to me. I dread it and leave it untouched, I’m an unapologetic and uninformed mother of a child with Autism, owing up to it is the best I can do.
I try to ignore news reports about immunization or untested wonder drugs or overly restrictive diets. We tried the gluten-free, casein-free thing. We didn’t see a difference other than in our grocery budget. I step lightly around anything I see or hear where the word “autism” is paired with the word “cure” since it all seems to be the product of some equally desperate parent somewhere who has latched on to something with a fanaticism that scares me.
On bad days I feel singled out – 149 neuro-normal children, then Gus, then another 149 neuro-normal children, at least that’s the current statistic -will have that effect on you. I try to hold my head up high, but setbacks are as frequent as they are unpredictable and painful. Misguided interactions with those around us weaken my spirits on a continuous basis.
I brace myself every day to tell another person - or six or 10 – of Gus’ diagnosis, trying to put on a mild smile that signals that I’m tough enough to deal with it. The reactions run the gamut from tired clichés to heart-felt sympathy; “Special” is a loaded word in my world. I don’t feel special, regardless of how many people insist that I am. I would give my writing hand to be ordinary again. I’m not special, I just didn’t have a choice. I would love to have one of those not-special children – and I feel deeply guilty for wanting that.
Most people want to focus on how good we seem. How good Gus seems, how good the therapies must be going, how wonderful everything seems. I try to indulge them, but on a crappy day that seems like adding much too much insult to my injury. I’m constantly taken aback by how everyone expects me to be upbeat. I wonder why do I have to make others feel better about my predicament, shouldn’t it be the other way around? I’m starting to dread chance encounters, telephone calls and meeting up with friends, because it all seems like a never-ending curtain call for me to rouge my dark moods a fake pink for the benefit of others. We may seem great, but who can I tell that Gus has swatted me point-blank in the face twice last week, for reasons not yet determined, but leaving me in tears nevertheless? Who can I go to when I’m all out of ideas about potty training, a child who has outsmarted me? I don’t want to talk to another mother of a child with Autism - that seems like punching someone who is already down. I’ve been told repeatedly that I’m not alone in this, yet this struggle to be socially graceful and truthful at the same time feels very lonely to me.
There are so many other stumbling blocks in my daily life: Photos of Gus when he could still look straight into a lens and smile. The well-meaning mother suggesting a play date eventhough her son is visibly bored with Gus. The proud father at the playground, who won’t shut up about how developmentally-advanced his little daughter is. The many well-meant “you must read this/see this or that” or “Didn’t Einstein have Autism?” The family get-togethers, birthday parties, doctor visits, holidays, haircut appointments, photo ops, the play dates that leave me depressed. The thought that Gus will be ridiculed in elementary school, bullied in middle school and – at best – ignored in high school. The thought that I will never stop having these thoughts. The thought that these thoughts are driving me crazy.
One autism professional I’ve met recently said to me “if you know one child with Autism, you know one child with Autism.” It is so true as I’m finding so preciously little to compare Gus to and mountains of information, tips, tricks and suggestions that do not apply to us. It seems like the disorder itself tries to isolate us.
As you can tell, I’m not at peace with the diagnosis - not yet, maybe never.
I struggle to know what God’s intentions are for a child who has trouble relating in a world that is all about facebook, twitter and social networking. I’m at a loss there and have no answers – not yet, maybe never. Pray for me if you can. I’m not losing my faith, but I struggle with my purpose in life and with Gus’.
I mourn the loss of that sweet innocence of childhood that I so enjoyed with Gus. For two years, everything was possible and nothing was bad or wrong or wasted. Everything new was funny and wonderful. Now everything is either progress or distress or just plain and simple stress. I catch myself following Gus around with a mental clip board, ticking off the good, the bad and the ugly. I so miss that carefree time and wonder if I didn’t appreciate it enough. Didn’t relish it enough. Didn’t thank God for it enough.
The best part of my day are the hours I spend alone with Gus – hiking, reading, learning numbers and letters, going to physical therapy, running errands. We are a good team together. He is funny, easy-going, affectionate, playful, fearless, an eager student and adventurous play buddy. Most of all – unlike me – he is thoroughly unconcerned with what others may think or say with words or looks. I pray that he stays that way for a long time. I dread the time when he’ll take notice that others judge him.
Those carefree afternoons are the times when I daydream of moving us to a remote location leaving all those pesky social to-dos behind us. We could simply focus on us and Gus. I know someday he will have to live on his own or at least without us, so we wouldn’t do him a service removing him from society. Still, it’s tempting whenever Gus turns to me with one of those luminous smiles that is meant for me and only me.
When you’re 12 months in, people subtly begin to suggest that you move on and pull yourself together, find those boot straps and heartily yank on them and roll up those sleeves while you’re at it. I, do that with Gus every day. I work hard with him and for him and use all my positive energy to urge him on. As for the rest I can’t do it. Simply can’t. This diagnosis is so much bigger than me, I haven’t got the strength or wisdom to stand up to it completely – not yet, maybe never.
I’m profoundly sorry for not ending this on an uplifting note. Yes, there are many improvements and achievements and I thank God every day for the husband I have, a man who sees Gus as perfect and treats him accordingly, a man who loves us both and keeps our family strong and makes our lives fun. I am also deeply grateful for family and friends who have tried and sometimes found the right words and stuck by me even though I’m an unpredictable mess of feelings and reactions. I’m not as much fun as I used to be, but I have people who care about me regardless and I’m grateful for that.
So this is my half-cheery attempt at a closing. If you care about us, take time this month and do/say something nice to someone affected by Autism. Run a race, buy a tote bag, slap a sticker on your bumper or borrow a book from the library and educate yourself. Moreover make it a point to compliment a haggard looking mom with an out-of-control or odd-behaving child – he/she may not have Autism – but there are plenty of parents who are defenseless and gravely wounded in the crosshairs of the ignorant. I know that from personal experience: The tsk –ing from the old woman at the grocery store or the stares from other mothers at the playground. I fantasize about the bumper stickers and T-shirts I’m printing “He has autism, what’s your problem?” or “Autism is the new normal” or “He has an Autism diagnosis, You are just plain ignorant”, but then again, would that mean anything to them?
So make someone feel less judged, less special. Do it, help us, help others. Thank you.
I will continue to write about Gus and my life with Autism, but I’m going to move these thoughts to a different blog at http://purzelbaumlein.blogspot.com go there if you want to know more, stay here if you want to see us - a family first, a family affected by Autism second.
Thank you for reading along with me.