"Can I stay home when you take Mairin to school in the morning, Mom, so I can sleep late?"
My son's words shot through me like a bullet stopping me dead in my tracks.
Since the day he was diagnosed with autism in April 1998, I have wondered what level of independence he would achieve. I sat there on the couch staring at him when we got back from the neurologist's office. He couldn't tell me he wanted a drink or a snack. He couldn't tell me if he was in pain. He couldn't tell me if the fluffy clouds outside looked like a horsey or a dinosaur like other little kids.
His prognosis was grim, as was the case for what we now realize was one child in every 110 diagnosed that year.
While he stood before me screaming about something I could not identify, I continued to stare almost daydreaming about this new life flashing before my eyes. Could I teach him to point or speak again? Could I teach him how to learn? Could I teach him how to clothe himself? Could I teach him to bathe himself? Could I teach him how to cook, to drive, to perform household chores? Would he ever be able to get out of my car and walk into school by himself? Would he be able to go into the bathroom on the other side of a restaurant without me chasing after him to make sure he was safe? Would I have the courage to let him roll the shopping cart one aisle over in the grocery store to grab something then meet me by the deli without the fear of never seeing him again?
According to his new neurologist, probably not.
I wasn't worried about academics. I was worried about survival skills.
But mostly I stared at my two-year-old son wondering if he would ever reach a point in his life where I could leave him alone truly knowing in my heart that he would be okay when I arrived home. Even for a short time.
It's a question most parents don't have to ask. For parents with a child with autism, it is a terrifying thought -- leaving your child home alone.
After years of chasing after him to keep him out of traffic, spending an hour letting him dress himself or searching desperately for him in the mall after he wriggled free of my death grip and bolted, Liam has learned how to independently manage most aspects of his life. I am still learning how to trust him to handle it. He can prepare small meals with minimal supervision and makes coffee for me every morning. He is a whiz when it comes to his personal care and hygiene. He keeps his room neat and tidy. He assists with household chores, sometimes even offering voluntarily to take out the trash when he notices it is full. My own baby steps in bravery keep me from following him outside or peeking out the window. I stand there -- stomach full of butterflies, biting my nails, counting the seconds until I hear the front door open again when he walks back inside.
I knew this day was coming. Natural progression dictates that at some point he would ask, in his own way, "Do you trust me enough to leave me home alone now, Mom?"
Approximately 12,000 children are born every day in the United States. The Centers for Disease Control announced last fall that the rate of autism prevalence in children born between 1994 and 1998 was 1:110. If autism rates suddenly plateaued at 1:110 in 1998, rather than continuing to rise as suspected, this means parents of nearly 500,000 children diagnosed with autism in just the last dozen years are wondering if they will ever be able to leave their kids home alone -- no matter what their age.
Many people with autism require constant supervision and cannot be left alone for 5 minutes, much less home alone to fend for themselves. When these babies grow up and their families can no longer care for them, our country will have to pay billions and billions of dollars to house them. Florida and New Jersey are already recognizing these back breaking costs to their state budgets.
OR we could invest that money on the front end of their lives so they learn how to care for themselves -- independently.
Thinking about it further, Liam's current favorite movie is Home Alone. A part of me wonders if he just wants me to go away so he can scream again, order pizza without my knowledge and set paint can booby traps for burglars above our front door.
But the truth is that every child grows up. Even children diagnosed with autism.
Every adult deserves an opportunity for independence. One of these days I will have to leave Liam home alone simply because I will not be on this earth to look after him.
Might as well let him test his wings to see if he can fly while I am still here to catch him if he falls.
Elizabeth Gregory: Late-In-Life Pregnancy and Autism
www.patientcenters.com -- Autism Center -- Parenting: Disciplining ...
Parenting - Autism Spectrum Disorders
Could My Baby Have Autism? - Parenting.com
New Autism Facts and Figures - Parenting.com
www.indigochildren (videos) www.TheGospelofPhilip
What's sad is that so many Americans don't want to help our babies. They think our families should find a way to finance our children's care all on our own. While other nations have a robust safety net - we've gutted our's. It seems we need to get out there and fight to fix our social programs quickly!!!
Every parent struggles with the delicate balance of allowing their children the freedom to become independent and protecting them from the harsh world. But parents of autistic children have an undesirably difficult and unenviable job - and the rest of our society needs to listen to their concerns and come to their aid.
My very best to you and Liam.
http://graciouslivingdaybyday.com/
That's what I say. Just stay close enough to keep him safe.
My son surprises me every now and then. For years he couldn't play catch. And now at age 8 he's coming to me to play. I guess he liked us trying and finallly his skills caught up with him.
It's hard walking that fine line of being overprotective. But I know with boys, we like to accomplish things. It builds our confidence. No matter how small the task.
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My main interest on Huffington-Post is with vaccines and vaccination. Even so, I do not like when every blog entry on autism turns to the issue of vaccination.
This blog entry has nothing to do with vaccines and vaccination. Unless Ms. Reynolds decides to change the focus by commenting on her entry, could this be a 'vaccine/vaccination' free zone. Please.
I completely agree and hope to see more funding going in that direction.
I haven't decided what to do about this yet. I think he probably would be fine but I think I would want to have sentries posted at the gate to be double triple sure. One of these days when I am brave enough to try...I will write Home Alone (2)! Ha.