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Labor Day and the Full-Time Autism Parent

Opp cost
By Cathy Jameson

I went into the education field over twenty years ago.  Conceivably, had I continued to teach, I might soon be eligible to retire.  I don’t think about retirement like others in today’s workforce think about retirement.  That’s because I left my field long before I ever expected I would.

Instead of soon retiring from what I’d hoped would be a life-long career, I found myself in a different role.  It’s a more permanent one that comes with no salary, no benefits, and no 401(k).  The role I have now is full-time caregiver for my child.

More and more parents today are finding themselves in similar roles.  While some may be able to juggle part-time work or a full-time job while caring for a severely affected child with autism, I have not had that chance.  Ronan is non-verbal.  He has seizures, and he has low energy levels.   His week is peppered with therapy and with a shortened and modified school day.  He is home more than not, which means that I, too, am home with him.  Being able to afford the round-the-clock care that Ronan would require in order for me to step out of the home and work again is nearly impossible. 

I do work, as does every stay-at-home parent, but I don’t know if I could actually put a dollar sign on the labor that is required to care for Ronan.  I have read that over a child’s lifetime, it costs parents $245,000 to raise them.  If that child has autism, costs can exceed $1.4 million  over their first 18 years.  Even if I had made my way back to the teaching field, I’d be hard pressed to find a job that would cover those costs. 

Today, instead of writing lesson plans, grading papers, and developing curriculum, I’m home.  At home, I’m overseeing Ronan’s therapy, medical appointments, and his wellness.  I certainly couldn’t do what I have had to do for my son and for my family without the help of some of the people who’ve graced our lives.   We have quite a team of people, specialists, providers, and supporters to assist me with Ronan’s needs for which I am grateful. 

Those who believe in Ronan also believe in me.  They encourage me.  They help me weigh decisions.  They help me plan for now and for the future.  They help my family never ever expecting payment in return.  Those people remind me that even though some days I yearn to return to the classroom, and to be able to contribute just a few dollars to our family’s meager but somehow manageable budget that the most valuable role I have right now is as Ronan’s Mom. 

I forget how important that role is on some days.  That’s when I dwell on the fact that… 

I do not get paid to be home.

I do not receive any wages or compensation to provide for my son’s intense needs.   

I do not make money looking up medical, educational, behavioral therapies, practices or treatment options that may benefit Ronan. 

I do not get stipends for using products that his therapists or medical and educational providers prescribe. 

I do not contribute to the gross national product nor make life-changing contributions to a company, business, or firm. 

I do not get to do what many other parents do on a daily basis which is to be an active and contributing member of a community workforce. 

I initially left teaching to raise my children never with the intention to completely slip away from my career.  But I have done just that.  When my kids were school age, I had every intention of going back to work.  I was going to teach again, not just because I loved being in the classroom, but because I always thought I’d be financially contributing to my family.  I envisioned that happening years ago.  But years ago, Ronan got sick.  And when he got sick, he needed me home more than we needed me working.  Fortunately, we have survived so far because my husband, who works two jobs, has been able to support us. 

My husband works hard so that I can be home doing my job with Ronan.  My job, which includes taking care of a severely affected child with autism, does not come with promotions, advancements, or raises.  It does not offer unemployment benefits or workman’s compensation.  It isn’t the easiest thing to do, but I take everything about it seriously.  Even though I have not been part of the mainstream workforce for quite some time, I do have a job and a noble one at that.  I am, and will indefinitely be, Ronan’s primary caretaker. 

Cathy Jameson is a Contributing Editor for Age of Autism.

Comments

AutismGoAway

Somehow the only support system I was able to find has been paid. I have to hand out money to all the people who support my son. Even though they're nice, it's not the same as the family and friends I used to have. it's hard when you have a grown boy in diapers who doesn't want to keep his clothes on. I gave up my entire career and spend my days worrying about my son's medical problems, driving my son around, trying to stop him from screaming, teaching him because he loves to learn and hoping that one day he will be able to communicate in some meaningful way. I never talk about my hopes and feelings with the support system who were trained to see my son as essentially retarded (though they would not use the word) and happy. My son is a great kid deep down but has so much discomfort in his body that the real him rarely comes out.

Gayle

We are the parents of an adult son with autism who have experienced all the same things mentioned by Cathy and the other posts. I had to stop working long ago to care for my son, have lost friends who just didn't understand as well as relatives who were indifferent to our son. We are in a constant state of worry over his future. What a sad outcome for all of us affected by the autism epidemic.

Warrior Mom

Oh, yes! Sometimes I believe this is such an oversight to many. I had a lucrative career before my son's birth. I did want to stay home UNTIL he started school. Life has dealt us a lot. Money isn't everything but having it hasn't hurt anyone. Any money I can scrounge together either goes towards our older son's college fund or our son with autism's future care fund.
Luxury is being able to take a bath in peace, relaxing with my eyes closed, getting absorbed in a good book, talking to friends, taking a family vacation centered around our non-disabled son's desire and watching TV without closed captioning because of our autistic son's constant verbal babbling. Yes, I get angry and frustrated... Who doesn't, especially when our government shuns their responsibility in not caring for our vaccine damaged children with autusm? I wonder what could have been...I still love my son and grieve for him and how he has to struggle to live. Sorry, but I don't embrace Autism like some...I feel sad and deprived. I see our friends become empty nesters with their kids heading off to college. I see them enjoying their freedom. Not us, our son needs care if we are to go out. After a while, friends learned NOT to call us to do things at the last minute. My Friday nights are spent sitting in our bathroom, encouraging our son to make "Stinkies" so he won't be so aggressive. Thankfully I'm one whose husband didn't flee and will help when I'm exhausted.
Yes, I gave up my life to care for my son. I won't have a retirement plan or money to pass to our older son when we die. No, our oldest son will have to sacrifice as well to care for his beloved brother.

Can't Retire

Thanks for writing about primary caregivers' lost income and career opportunities over their years of part-time or no employment. Many of us have lost valuable work skills and gotten out-of-touch with new technologies, making it difficult if we are finally able to re-enter the job market.

And with no VICP compensation, waiver or MA you become forced to get creative with money management. No vacations. Ancient car. Bulk foods. Thrift-store shopping. Deferred home maintenance. Under-funded or spent IRA's. I'm still wearing my son's outgrown sneakers. We're in a holding pattern, until the next health crisis.


Andrea

Cathy,
This is so similar to my own story right down to being a teacher. Except I'm a little older than you and my son older than Ronan. He is also non verbal but luckily does not have seizures. I'm glad you have friends and family who support and understand your role as caregiver. I don't. People don't understand or simply don't care about the ongoing never ending gut prohlems or immune dysfunction that has went on with my son. They don't seem to believe his ongoing gut problems dominant our lives like they do. I should have thrown him in some "program" and been working towards retirement. Contributing to my families assets. My in-laws worked to retire in a nice condo in Florida. People don't seem to get what we can save will go to the lifetime care of my son. They don't get it because these kids weren't around when they were growing up or raising their own kids. The media does a great job of making people think "autism" isn't that bad and many issues can be overcome with the right amount of effort and positive attitude. "Autism" definitely isn't medical. But, those of us living with and caring for our kids know differently.

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