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Autism Moms: Working or Not? February 10, 2009

Posted by hopeauthority in Autism, Family.
Tags: , , , ,

The vast majority of mothers of children on the autism spectrum or with other special needs issues can’t/won’t/don’t work outside the home. The reasons for this are many.

Some moms have young ones with morning and afternoon in-home therapy sessions. Others homeschool. Some unsung heroes are literally taking heroic measures each day just to keep their severely afflicted special children in their home settings.

Autism is a 24/7 job.

Even parents of children in full day programs have the challenge of how to handle sick days and school vacations and holidays.  The lack of flexibility life with an autistic child provides seriously restricts the mom’s ability to get a job. She may be limited to temp work. Part-time work. Seasonal work.

From what I’ve seen, the lack of reliable, trustworthy and specially-trained child care is the primary reason most special needs moms… who want to work… don’t work outside the home. 

Now I’ve done my time on the train to the city with my 10 hour workdays and my 4 hour roundtrip daily commute, the business suits and pumps (Did I mention that I freakin hate shoes. Really.) I am no stranger to the long workday. I loved the interaction with most of the people. The annual Christmas Party, the raise and bonus. And the weekly paycheck. Ahhh. Remember the paycheck…

But with 81 year old inlaws who generously offer to get the kids off the bus for me once or twice a week (tops!), and no one else I can rely on to pick up the babysitter slack, I am limited in what work I can do…despite my various degrees and experience.  And don’t think I don’t know what you’re all thinking about the inlaws’ age…I have nightmares about it.)

I suspect many of you are in the same boat. You’d love to work, not only to get out of the house and interact with adults, but also to help out with the finances in this tough economy. And let’s not forget about how expensive it is to have autism or special needs in the family! (Fabio’s diet alone is a part-time job…and costs a part-time salary, too!)

I am a freelance writer who assists businesses with web and traditional marketing. I can meet clients during school hours and can do almost all of my work at home at my convenience.  I’m also an attorney and title closer who closes real estate deals…very part-time in this market. Actually, almost non-existent.

How about you?

How do YOU juggle working and being a special needs mom? What is the hardest part of it all?  And what kind of work do you do?…. OR…. If you don’t work, but want to, what is the major roadblock that is in your way?



1. acollage - February 10, 2009

Great blog entry! Working for us is so often necessary, but even more often, so difficult. We decided that I would work-from-home, permanently. I’m extremely fortunate that it worked out for us that I have a good wah job, because I get frequent calls from the school, he and dd have doctor’s appts., if he’s having a bad day, that kind of thing. So great to work for understanding people. I’m curious how other people do it, too.

2. FXSmom - February 10, 2009

I work. I have too. I wish I didn’t and I know in the future I may not get to. For now my job is understanding. I work in a bank, on the top most floor in their trust department. I love it. The school also works with us to make sure Matty is covered with care and I trust them. Someway, somehow, it all works out in the end for us.

hopeauthority - February 10, 2009

It is so nice to hear from someone who loves her job, has an understanding employer, and has the school working with her on providing quality care! I didn’t think it was possible. I’m sorry you have to work for now, but I’m glad it works out for you while you do. Thanks for stopping by and sharing!

3. pixiemama - February 10, 2009

Ah, yes. The same as you, actually, except, without the part-time lawyering. Since my kids seem to have a lot of out-of-town doctor’s appts. that get in the way of my work hours, I put in a lot of night/weekend hours. And I sweat bullets over the bills in my downtime.

We’re a long, long way off from me ever having a “real” job (as in, one that involves me wearing shoes) again.

hopeauthority - February 10, 2009

Hey Pixie (my shoeless soul-sister)! I am in awe of the amount of time you work, the fact that your husband works out of town a lot, and the 4 kids and all the doctor’s appts…and the firewood chopping as I recall! If you did wear shoes…no one could fill them!

4. Carole Keeney Harrington - February 11, 2009

I’m the mother of a 41-year old, and I’ve worked for all of his life, except for the six weeks I took off to have him, the year I was depressed and had to quit the job I loved – as a journalist – and six months when I retired (May to December 2007) and am currently the president/CEO of a small non-profit. I also worked at an ad agency for five years after I quit the newspaper. So…I’ve worked non-stop for 41 years except for about 20 months.

My son is classically autistic, self-abusive, sometime agressive and has epilepsy. How did I do it? When he was little, I did work part-time for about 10 years. When I got my degree in journalism and went to work FT for a newspaper, we started our own program – Avondale House for Autistic Children in Houston, TX, now 30 years old and with a $1.4 million facility. We had a daycare that took care of him after school – the school bus dropped him, and I picked him up at 6 p.m.

He aged out of Avondale at 18, and I was able to place him in a HCS (Home and Community Based) Medicaid waiver program and in a group home for 10 years. When he was molested, I brought him home. In the last 10 years, I’ve had a team of ABA-trained college students and other people (currently a musician type with an art degree, a Ph.D. candidate in neuroscience who has been with me all through college, a young woman who has a slight disability herself – who is mostly a caretaker, and a student in education).

I earned my bachelor’s and master’s degree after he was born. For seven years, I wrote grants and funded my own salary at a community college. I then returned to communications.

Currently, he goes to Avondale one day each week to socialize (they now have an adult program and adult group home, but I have no desire to have him live away from home).

As the president/CEO of the organization where I now work, I have great flexibility, since I do not have to answer to anyone but my Board. However, I still have to raise money to keep the place going. If you can raise money, you can have plenty of flexibility, as you can write your own salary.

I hope I haven’t bored everyone.

5. hopeauthority - February 11, 2009

BORED EVERYONE?! Are you kidding?

Do you have any idea how valuable your contribution is? It isn’t often that those of us who are parenting young children with autism get to benefit from the wisdom of the pioneers who walked this road before us. Or, in your case, I’d say blazed the trail…

Your story is both heart-warming and heart-breaking in its honesty. I can’t imagine how hard it must have been back then when so little was known about autism and so few treatment and educational opportunities were available.

The ground-breaking things you accomplished… way over and above what most parents would ever contemplate… leave me speechless. Working almost non-stop, founding Avondale, your education, the grant-writing, and still caring for your son.

You make me want to be an even better parent. To make a difference.

Thank you so much for your contribution. Please feel free to comment often as I know my readers would love to hear your voice.

6. tiredmama - February 12, 2009

Well, I don’t work (yet). Some of the reason behind me not working is the age of our children. Christian is not yet in school full-time and Olivia is not preschool-aged yet. Another reason is just not having childcare available who feel like they can “handle” our situation. I would hate to start a new job only to have them call me and tell me that it just won’t work out. Once Christian is in school all day I have been entertaining the idea of working again if I can find somewhere that is able to be flexible enough to work with us. I have also been trying to keep my ears open for positions within the local school district that would then offer me the same holidays and breaks as Christian and then not needing to find outside care during that time. I am in awe of parents who can and do work when they have an autistic child at home. I hope that some day that will work out for me (or that I can find a company that would allow me the flexibility to work from home).

7. MOMSBLESSINGS - February 14, 2009

I have for the past 4 years been babysitting for my cousins children in my home. It has been tough at times especially when I have had my special needs child home sick or had to take all of them to the doctors. But all in all it has been a very nice way for me to stay home and be there for both of my children, and make some money. Unfortunately it will be coming to an end this June. So…I have to find a job, this is tough because I can’t put my special needs child in before or after care, I will have to find a job that is part time, and will provide me to be off when my children are. Probably the only option I will have is working in the schools. And this is not easy either because of my requirements. Its very difficult I would love to find myself a part time job working in an office somewhere so I can join the adult human race again, but I don’t know if this would be possible. I guess I’ll have to see, at this point I can’t even think about it until my sons CSE, so I know where he will be next year. Ever feel like your hands were tied?

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