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Best of: Labor Day and the Full Time Autism Parent

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Below is a BEST OF from Cathy, from Labor Day 2015. What a difference 5 years makes. What does your child's school look like this year? In person? Distance? Hybrid. My Bella is in her last two years of transition, and so far, it looks a LOT like early intervention. We have an OT coming to the house to implement IEP services on Thursday. Wish her luck. I've been at this a very long time, and my patience is "wafer thin." Like many of you, I've been full time autism parent, full time teacher, full time OT, full time speech, full time so full I could barf time everything. Oh, yeah, and work too.  3 labors might have been easier! At least shorter.  Hope you get a break this weekend, friends.  KR

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

Gayle

Cathy-I am the parent of an adult son with autism and have been his caregiver since he was born. I also intended to go back to work when he entered school years, but his needs were too great and he needed me here at home with him for educational, medical, seizures, attending doctor's appointments and ISP meetings, and on and on and on. Like you I couldn't even think about returning to work full or even part time. My son is now an adult and I am still his caregiver and now the pandemic has closed his day program down since March so he is home every day, making it even harder for me. We are the warrior autism moms who do everything for our sons and get no monetary compensation or reward for our constant care giving. We are the most dedicated moms to our disabled sons and we do it because we love them so much. God Bless you and your family and we must remember that we are not alone in our plight, but that thousands of others are in the same situation.

MamaBear

God bless you and Ronan’s father! Not everyone sees (or appreciates) the loving labor that you provide for al your children. But we do.

Prayers as you continue to love Ronan and his siblings!

Julie

Sorry this is off-point but wanted people to see how this Murdoch newspaper is still pushing their Andrew Wakefield agenda in Australia.
https://www.facebook.com/theaustralian/posts/10151532959854978

PS Not really off point actually, since Cathy and her family have suffered because of this agenda.

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