Anonymous Mom is a weekly column of motherhood confessions, indiscretions, and parental shortcomings selected by Mommyish editors. Under this unanimous byline, readers can share their own stories, secrets, and moments of weakness with complete anonymity.
My husband and I very much wanted children. We struggled to keep pregnancies, went through two miscarriages, and ended up having a beautiful set of boy/girl twins. We learned that our son's "developmental delays" weren't only that, but ended up being symptoms of classic autism. We were devastated but determined to do our best.
Our next child ended up with PDD-NOS, also placing him on the autism spectrum. He developed symptoms before even receiving vaccinations, thus putting our minds at ease that it wasn't our fault this time.
We are poor. We are isolated due to family distance, exhaustion from caring for our children and primarily for lack of help for my older son.
There are so many ways caring for our older son wears us down that lots of people miss. And why shouldn't they? He is verbal. He can eat. He is intelligent. Therefore, he often misses significant cut-off guidelines for any government/community help. Our school district doesn't recognize a medical diagnosis of autism, despite us having around six medical diagnoses at last count from various specialists.
As a mother of two autistic children, I found the murder of 14-year-old Alex Spourdalakis terrifying. Let me clearly state that murder is murder. What Alex's mother did was horrifying. The method, the justification, the result. But more horrifying than those details is her feeling that this was all she had left. That she felt that she needed to kill her child so he wouldn't suffer and needlessly rot for decades in a government run institution, particularly after she was no longer able to care for him in her older years or after she passed away.
Nobody understands that fear like I do.
What many readers who responded to that story don't seem to realize is that the majority of parents like me are walking a fine line while caring for their autistic children. There are a few of us who are clinging to that line by our fingertips, trying not to look down as we dangle helplessly over the abyss.
Services, both in quality and availability, differ greatly depending on insurance. There are even layers to Medicaid that eliminate or greatly decrease one's ability to use them depending on a couple hundred dollars (an average grocery trip for a medium family) up to a year in one family's annual total income.
Also, there are many agencies who won't help us in particular because their services are based on an educational diagnosis of autism, and our sons are not able to meet the educational requirements for this diagnosis.
Why is that?
As a young disabled mother of preemies, I felt I had to overcompensate. Expectations for my parenting were already low from my in-laws and some of my own relatives. When the twins were born prematurely, I knew I'd have to work even harder. We talked endlessly with our babies. We held them. We tried to help them sit up. We tried to work through feeding difficulties.
As the twins got older, our son's quirky behavior was the focus of most of my attention. If he banged his head on the wall, I dropped everything to secure him and make him stop. He got baths as often as necessary despite the screaming, thrashing and refusal. We forced him to eat mouthfuls of veggies and fruit--even if he'd spit them out--because we had to keep trying.
A lot of his classically autistic behavior is greatly subdued by years and years of attempts to "catch him up" in the hope that he would someday be able to lead an independent and successful life. He is not allowed to flap at the table. He isn't allowed to wave his loaded fork about at the table. He is not allowed to stop holding my or his father's hand often in public. I politely ask him to please stop when his chirping, screeching, yelling and other noises are grating against my eardrums. And we have done our very best to try and raise children we can take out to dinner, the dentist and the salon with as minimal fuss as possible because they will have to get out into the world someday.
What has that earned us?
A child who struggles to hold it together at school until he gets home and, like a shaken can of soda, explodes.
A child who, from a glance, seems fairly typical. Until he runs across the waiting room to take an infant toy from a baby in a car seat.
A child whose condition our in-laws thought we were exaggerating just so we could avoid attending family events. Until he set my husband's aunt's kitchen on fire at a post-funeral dinner because he loves fire. They had a gas stove and there was a picnic basket sitting over two of the burners.
A younger son whose first reaction to any negative emotion is to physically lash out due to years of watching his older brother do the same.
A child who, just this afternoon, waited until my husband left the barbecue unattended for a moment to retrieve food to put on it. My son calmly walked over and threw a large stick into the smoldering coals to see if he could build a fire despite our repeated lectures on the dangers of fire, matches, fireworks, lighters and all other pyromania accessories that fascinate him.
A child who hovers over us in our sleep "to say hi."
A child who almost drowned his baby brother in formula because he wouldn't stop crying.
A child who wanders, takes off on his bike to God knows where, steals and invades privacy, hides lighters in his pillow case whenever he finds them, and is now failing most classes.
I could go on.
There is so much. My fears for my older son are endless. Whenever I think about putting him in more intense residential care, my first thought is finances. We can't afford to send him to a beneficial school let alone a good therapist or more intensive services. Being the recipient of government insurance, I have many horror stories regarding my own care. I shudder to think what institutions would accept a child with needs like those of my older son.
Would he be attended to as closely as he is at home? Would he be taken advantage of by other patients? Staff? Would his twin sister and little brother understand and be able to forgive us? Most heartbreaking of all, would he be able to forgive us? Yes, he is out of control and we are exhausted, but under all the difficulties is a child who I know must love us and hurts just as much as we do whenever he does something dangerous or unacceptable.
And yet there is always the fear of more. What will we do when his hormones drive him into more frenzied and furious behavior? What if he sets the house or garage on fire? What if it's someone else's property? What will we do if he's failing out of school and continues not to be bothered because his planes and trains are more interesting? What sort of future will he have? What sort of future will my husband and I have?
To further add to the stress and anxiety, the fates have decided, despite our efforts, to bless us with another child. We were shocked. I was horrified. Some days I still am. All the past experiences I've gone through bringing one baby home to an autistic child race through my mind.
Will he try to "burp" this one by fiercely pounding his fists on this baby's fragile chest? Will he mimic violence glimpsed in his father's video game on this child and try to pull off their head? (You can bet DH got a frosty bit of ear-chewing for that incident.) Will I be forced to keep this baby in a sling or in my arms constantly as long as they're awake lest I put him or her on the floor for an instant? Why us?
The bites, bloody noses, scratches, bruises and wounds my older son has inflicted upon me in his earlier years have healed, though not so with his siblings quite yet. We aren't forced to employ off-label sleeping medication every night to put him to bed any longer. Though don't think it doesn't still cross my mind on an especially rotten evening when he just won't go to sleep. We can't even send him to the bathroom most of the time and trust that he'll be back out in under 10 minutes, that the toilet won't be full of paper and there will still be soap left when he comes out.
But all these behaviors are still far, far away from most 11-year-olds. Especially considering that he seems to be regressing rather than developing--unless you count uncanny dexterity and sneaking skills--both of which seem to be rocketing right along.
There is no cure. If there were, those with far greater incomes than us would have found it, discussed it and made it known. There is no reason.
For me, every day there is less and less hope as I live with this young person. This young person who exhausts me, who sometimes frightens me, who breaks my heart and yet who depends solely on my husband and I for every aspect of his care.
I love him dearly, but I rarely love living with him and I am deathly afraid he knows it on some level.
I will learn the sex of this unexpected blessing in the next couple weeks. If it has a penis, I will lay on that table in the front room of our home and my husband and I will cry. Autism affects boys far more than girls. Three out of four children with autism are boys. Even now, does another autistic child wiggle and jump in my womb?
So while there are parents and mothers with connections, friends, support groups and programs, there are also those of us hanging by that thread. We are among those who eagerly bounded out on that high wire of parenting with high hopes and great ambitions to better the world and give our children their own joyous place in it. But after a time, we're still here, wondering how we got lost on such a narrow course while the rest of our generation of parents happily and obliviously pass us by.
Killing a child isn't excusable. But for all those who've never been in such a dark corner of their soul, scratching at the walls and desperate to find a way to the light at the end of the tunnel, I do hope they know how lucky they are because there are some of us who doubt we ever will.
I know I need help. I am in therapy every other week and sometimes every week, particularly during the summer when it is just the kids and I during that never-ending hell ironically referred to as summer break. My older son was receiving help, too. That is until the man who came to see him once or twice a month during school decided to go to a private practice and not tell us. Good thing we called to schedule summer appointments at our older son's request or how else would we have known?
As a result, I'm also trying again to get him help through our community mental health program. We applied last year but because our son, at age 10, hadn't had any run-ins with the law yet or severely injured himself, he didn't qualify. Less than a year later now, he's expressed a renewed interest in setting fires and has even mentioned killing himself after getting in trouble.
"I want to find where the most blood is in my body so I can stab it with something sharp and make it all come out," he once told me.
I hope that he will at last qualify for a minimal bit of help because we have run out of options.
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(photo: YURALAITS ALBERT / Shutterstock)