Coping With Working Mom Guilt When Your Kid Has Autism

When The Boy was first diagnosed with autism there was no discussion on whether or not I would continue working. I knew that I didn't have any other choice. We just couldn't afford for me to be a stay-at-home mom.

And aside from needing to work, I wanted to work.

Whether you're a mom who works or stays home - guilt is inevitable. And when your kid has special needs, it adds a whole other layer of guilt. (Yeah, it's super fun!)

Lately my guilt has been in overdrive. This last year, in addition to working full-time (I'm an administrative assistant to three attorneys.), I've been doing a lot of freelance work. (My day job schedule varies but I work a 35 hour week. And it's an hour commute each way.)

side note: My day job isn't my dream job but it pays the mortgage on our little condo apartment and provides kick-ass health insurance. I need my day job.

When I come home from work, there's dinner, laundry and cleaning, before bath time and bed time stories. 

Somewhere between all of that (and well after), I write for Babble and Parents.com. And every so often, I agree to write for other venues. It seems as if I'm writing more and more. Which yeah, it's great. I LOVE writing. I'm grateful. It's extra money. The extra money helps with therapy costs. It allows for the little extras in life - a new DVD, a meal at a favorite restaurant or a new toy for no reason. It also provides opportunity.  

Last month I attended a blog conference in Atlanta. And last week I flew to Disneyland. Both trips required me to travel alone. Without my family.

I'm not the kind of blogger that travels often (usually once a year). But when I do leave, it's tough on The Boy. He cries every night I'm gone. Though we try to explain to him, he doesn't understand why I'm not home. It throws him completely off schedule. And The Husband is left on his own to deal with meltdowns, bath time and the morning routine. I know he's a parent too but I feel like it's my job to take care of them both. And when I'm not there, I'm failing as a parent and as a wife.

And even when I am home, I'm still not always "there." I spend most of my weekends, sitting on the sofa typing away and most evenings, I'm working. The Boy often comes over and says, "Momma close the computer and come to my room." Sometimes, I close the computer and sometimes I just can't. And when I can't, it hurts because I waited so long to hear those words. It hurts because there are times when he wants to be alone in his room and asks me to leave. 

Lately I've been wondering if the little extras are worth the time away from my family. I've been juggling so much, for so long and I'm exhausted. I thought that once I graduated, things would be easier. Nope - I've gotten busier. And while I'm grateful for the work and recognition, what I really want to do is slow down.

Will slowing down eliminate all my guilty? Probably not. But I'm hoping that doing less for everyone else will allow me the time to do more with my family. 


Catch up with my Babble posts: 

• The Fears and Frustrations of Autism Parents
• 20 Female Role Models for My Son
• Why I Take My Kid into the Voting Booth on Election Day
• Is It Time To Put My Autistic Son on Medication?
• We Need More Family Restrooms
• Should Children with Autism Wear GPS Tracking Devices?

This Month on Babble

September was a busy month. There was back-to-school and well, back-to-school - because that's enough to keep any parent busy. So busy that maybe you haven't had a chance to read  what's been going on at Babble. 

Catch up with September's Babble posts:

• The Pros and Cons of Being Working Parents
• 7 Tips to Ease Transitions for Kids with Autism
• A Summer of Firsts Captured on Instagram
• Oh! The Things I Would Do If I Had My Kid’s Energy
• 6 Video Games My Son with Autism Loves To Play
• The Only That Matters When Your Kid Has Autism
• Play-Doh: Fun and Therapeutic for Kids with Autism

The First Day of School and Goals for a New School Year

"Do I have school today?" The Boy asked as soon as his eyes opened. It's the same question he's asked every single day for the last 4 weeks. 

"Oh yes you do!" I may have said this with much more enthusiasm than necessary.  

The Boy didn't cry or protest. I prompted him through his morning routine. When I asked him to put on his socks and shoes he did so independently. Okay, he put on one sock and one shoe. But he did it on his own.

And when the bus came, he stepped right on without looking back and took the first free seat. 

It's the 5th of his short life being put on a bus to school. His 2nd year at this school. If The Boy were a 'typical' kid he'd be heading to 2nd grade. Instead, he'll go back to the same classroom with 5 of his peers, a teacher and 2 assistants. It's comforting to know he'll be with the same teacher and most of the same students (their ages ranging from 6-8 years old). 

And because of The Boy's 'severe cognitive disability', he cannot participate in the standardized assessment. Which means, no additional pressure. (I hated standardized tests and assessments as a kid.) Some of The Boy's goals for the year include:

• verbal social interactions with peers
• following a variety of 2 step commands containing basic and linguistic concepts
• comprehension and responding to WH questions 
• reading a passage and answering multiple choice and short answer questions
• listening to the teacher read a story and answering 5 WH questions
• attending to a task without distraction for 5 minutes 
• decrease self-stimulatory behaviors
• display appropriate coping skills to deal with changes or disappointment 
• writing sentences using proper sentence structure and grammer
• solving 2 digit addition and subtraction problems with regrouping and;
• engaging in cooperative play skills.

It may not have been the place I imagined he'd be, but it's the right place for him. And I'm grateful that after two long years of searching, such a school exists. They understand him. They care about him. They know how to teach him. The Boy's learning and he's happy. That's the most important thing.

What goals are your kids working on this year? 

First days pics from years past

Can an Autism Mom Have It All? (My Response to Time Magazine Article: The Childfree Life)

By now you've seen this Time cover. The taunting photo of a couple sans kids sprawled out on the beach, hands over head, all smug and relaxed because their childfree life allows them to have it all.

The article explores the lives of childless women and couples. And ever since it's publication, the blogosphere has been all a buzz over it. 

Babble blogger Jeannette Kaplun wrote an excellent post in response: 

Being a parent has been the best choice for me, but it isn’t necessarily for everybody. That’s why it didn’t surprise me at all to see this week’s TIME cover, which looks at the choice more American couples are making — to purposefully live their lives without children. I don’t think that choosing to not be a mother is selfish. I actually think that it can do the world a ton of good. 

I agree with Jeannette, I believe in a woman's right to choose. I believe that not all women are supposed to be mothers. I believe that motherhood was the best thing that happened to me (even though it wasn't exactly in my life plan).

And I feel sorry for the women in the Time article. Not sorry that they don't have children - sorry that they feel the need to justify their reasons why they don't have/want children. 

Still the great debate continues. Can we or can't we have it all. And what does having it all really mean? Does 'all' even matter? 

We don't have to look to a magazine cover to see women who appear to have it all - all we have to do is log on to Facebook or Pinterest. Social media allows us to peer into the window of other women's lives and wonder how do they do it? They either have great jobs or they're stay-at-home moms or they have the best of both worlds - they are work-at-home moms. They live in the right neighborhoods, have the 'perfect' kids or the 'perfect' partner. They drive the nice car and eat the right foods. Everything matches and they're exactly the size they're supposed to be. Their hair and nails are always done. They wear designer clothes that I can't pronounce. They go on date nights, girls night out and romantic weekend getaways. Their homes are out of the pages of a Pottery Barn catalog - they can light candles without worrying about a kid setting themselves on fire. They craft and scrapbook and bake their own bread and do all sorts of amazing things with their kids that make me feel like a slacker mom. Their kids are on the honor roll, have dates to prom and get scholarships to college. They have empty nest syndrome, enjoy their retirement and/or surrounded by adorable grandchildren.

Time magazine makes me wonder: what about autism parents? Do we, can we or will we ever have it all?

I know many mothers who quit their jobs to stay home with their kids. Some autism moms home school. And when they don't, they wonder if they should. 

We spend hours researching, reviewing, learning about autism, therapies, medications and legal rights. We can easily spend more time on the phone fighting with insurance companies than chatting with our BFFs. We constantly worry about our kids and their future. Will they have friends? Will they fall in love? Have a job? Live independently? We want nothing more than to be there for our child, to live forever or secretly hope to outlive our child by a day (or less).

What about an autism mom like me?

I work (full-time outside of the home) because I have to and The Boy goes to a school I had to fight to get him into. As an autism mom, I am exhausted and overwhelmed. There isn't a night when I don't lay awake in my bed worrying over all the What Ifs and Will Hes. 

I look at the Time cover and I wonder if I will ever lay like that on a beach with The Husband. Our date nights are so few and far between - will a romantic weekend getaway ever be a possibility? Will we be able to relax and enjoy our golden years? Will we ever have a 'childfree' life even after our child grows up?   

I don't know. Honestly? The not knowing makes me sad.  

My life is far from perfect. I have more than my fair share of stress, disappointment and heartache. By some women's standards, I don't have it all. Not many women would trade their sexy heels to step into my sensible flats. And that's okay because I wouldn't trade in my flats for their heels either. 

So when I read a headline like When having it all means not having children - I have to check myself and take inventory of what I do have.

I have a husband who adores me and genuinely supports me in every way.

I have a beautiful boy who lights up my world even on my darkest day.

I have parents, family and friends who accept The Boy just as he is.

I have a job that pays the bills (and provides health insurance) and a few freelance gigs that keep me sane.

I have a comfortable apartment that's a size I can manage to keep clean. We have a car that can get us from point a to point b. And I have a few cute pair of sensible flats.  

I never wanted to be a mother. It wasn't something I dreamed about or planned for. Motherhood, for me, just happened. But being a mother - being The Boy's mother - has given me more than I could have ever imagined. I don't have many material things but I have the things that matter most. I don't have to have it all. Because I'm happy with what I have right now. What I have is more than enough. 

Breaking Out and Leaning In (my 500th blog post)

I haven't read Sheryl Sandberg's book, Lean In: Women, Work, and the Will to Lead, yet but over the last few weeks - I've read several articles in response to Lean In. I've read so many inspiring Lean In stories.  And it's made me reflect on my own life and this journey I've been on.

Nearly twenty years ago, I graduated high school, uncertain of what I wanted to do. So many of my friends seemed to have this plan. I didn't have a clue. 

I registered for classes at the local community college but after a year, I decided it wasn't for me. And I quit to work full-time in a department store. 

I floated from job to job over the next few years - often working two to three jobs at a time.

I returned to school because I was bored and needed something to fill the time. I struggled through most of my classes - especially math and science. I took classes in history, philosophy, business and psychology.  The only classes that interested me were courses in literature, creative writing or journalism.

After seven years working in retail and restaurants, I decided it was time to 'grow up' and get a regular 9-5 job in an office. I had no office experience. I had practically no computer skills. I hadn't taken a typing test since junior year with Mrs. Becker (and even then, I did horribly). And when I went to interview with recruiters - they were brutally honest. "You have no experience. No one will hire you." They all urged me to interview for retail positions.  

I was only twenty-five years old and I felt as if I were being shoved into this box of who I was to be. Even though, I was unemployed - I refused all retail interviews. I had never had any problems getting a job I wanted. I knew someone would eventually hire me.

I interviewed with a small private equity firm - I was in their office for almost four hours. I was certain, the job was mine. And I was shocked when they went with someone else. But I was lucky, that person didn't work out because a few weeks later - I was offered the receptionist position. 
    
I was going to school part-time at night and while my new job provided tuition reimbursement, they weren't very supportive of their receptionist going to school at night. Knowing I had another priority in my life was a threat. It meant I wanted something more than the cubicle I was sitting in. When I left a few years later, they were surprised it wasn't for another receptionist position.

My next corporate job was in the legal department of an investment firm. It was a true boys club - all the attorneys were white men, the one female attorney was ostracized and ridiculed. A secretary going to a city college was no threat - not to the attorneys anyway. The other secretaries - assumed my time with them was limited and so they didn't take me seriously either.

When I left that job, I was more hopeful than I had been in years. I took a job at a company where I thought I had real growth potential. I had just transferred to my fourth college and finally figured out what I wanted to do. 

I got married. Had a baby. And two weeks before I (finally) graduated with a BA in English, my son was diagnosed with autism.

Trying to find balance as a working mom going to school is hard enough - adding special needs to the mix adds a whole other layer of guilt.

It's been five years since my son was diagnosed with autism. And I've spent that time, being his advocate and his teacher. I've also been pursuing an MFA in Creative Writing. I have been in the same company for almost a decade and I've been an admin for more. 

This spring I will graduate and while I wish I could say - that I my degree will advance me in some way but I know that it will not. I will not be given a promotion and not even a pay raise. 

I have been told time and time again that I am 'over-qualified' for my current admin position but under qualified to do anything else. The only way I can "lean in" is if I quit and start over completely, which is really scary considering that I need to work, I need my salary and my benefits. Having a young special needs child - leaning in seems like a luxury I cannot afford. Not right now, at least.

Not every woman in the workplace can Lean In - that's just a reality we have to face. But that doesn't mean we cannot lead.

Two years ago, I started this blog as a class assignment. And it's really changed the way I've thought about myself, my job and my writing. I've learned to own it. I've learned to make peace with myself. I've learned that I cannot allow myself to be defined by my job. I've learned to pursue my dream in my own time - even if it means, taking one class at a time.  

I've learned that sometimes you have to break out in order to lean in. And just because I can't Lean In at work, that doesn't mean I can't Lean In another direction. 

It's Day 5 of the NYC School Bus Strike. Seriously?! When will it end?

We're on Day 5 of the strike.

I have used my 4th vacation day.

Yesterday I spent the entire day at The Boy's school. In a storage room. You can check out the You Tube video HERE.

Today I commuted to The Boy's school using public transportation.

How did it go? See for yourself...

Dear Mayor Bloomberg and Local 1181 (an open letter regarding the NYC School Bus Strike)

Dear Mayor Bloomberg and Local 1181,

Below is a picture of my son, Norrin. He will be seven years old tomorrow. He has autism and goes to a special education school in Westchester - 22 miles away from our apartment building in The Bronx. 

As my husband and I are both working parents - we rely on the Office of Pupil Transportation and the Local 1181 to get Norrin to and from school safely.

I am sure some wonder why we would choose to send our only child to a school so far way. It was not an easy decision to make. But not a single public school in The Bronx could meet Norrin's specific needs. It was a fight to get him placed into a specialized school but his school was well worth the fight.    

Yesterday, Friday, January 18, 2013, was the 3rd day of the NYC School Bus Strike. And my son Norrin is 1 of the 152,000 students stranded. On Wednesday and Thursday, I had no choice but to take vacation days from work to stay home with Norrin. But on the third day, I had to go into work. And with limited childcare options, I had no choice but to bring Norrin in with me. 

I am administrative assistant and my husband is a NYS Supreme Court Officer - we don't have the kind of jobs where we have the privilege of working from home on a whim. My husband, cannot even manage to take a single day off from work to pick Norrin up from school. So the responsibility rests on me. And while we have a car, I do not know how to drive. In order for me to get Norrin from school, I need to take a bus, MetroNorth and a cab - it's a 2 hour commute (one way). And I know parents are to be reimbursed for service but it's a $75 fare and I can't afford this on a daily basis.

Norrin isn't the kind of kid who can ride in a car pool with strangers. He still sits in a car seat. He has limited language and functions at a 4 year old level. Norrin's a runner and needs his hand to be held at all times. And while Norrin is okay riding trains - I do not feel comfortable sending him off with someone else - whether they know Norrin or not. When I commute with him, I keep both hands on Norrin while waiting on train platforms and when sitting on the train, I keep a hand on his knee because he tries to get up. If we're standing, I have to keep reminding him to hold on because he doesn't know how to keep his balance.     

So now I am forced to choose. Do I go to work? Or do I take my child to school?

I heard that out of the 145 students that attend Norrin's school only 43 kids showed up. These kids are missing out their much needed related services like Speech and Occupational Therapy. And because school is technically open - these  services will not be made up. They are missing out on classroom instruction and peer relationship building. Their routines are being disrupted. These are children at risk for regression. 

Norrin has come such a long way since his diagnosis, I cannot risk him regressing. And after disruptions to his routine, it takes weeks to get him back on track. So on Tuesday, I will need to take another vacation day so that Norrin can go to school.      

I have a generous amount of vacation time - four weeks. But if this strike goes beyond my vacation, I have no idea what I will do. I've already spoken to the Human Resources department and I've been told that this doesn't qualify for FMLA. And I need my vacation time to Norrin to appointments, for IEP meetings, for evaluations. This is beyond a stressful situation.  

So it seems ironic to me that Local 1181 members are fighting for their job protection, while so many parents - especially parents of special needs children - are worried about their own job security. My job is not secure - I can be let go at any given time. And while my bosses may be understanding, my being out of the office is an inconvenience. I worry about my job. Because I need it. And I have no union to fight for my protection.

This strike must end soon. Because the individuals who really need protection are our kids. And I am fighting for them.

Sincerely, 

Norrin's Mom

For more on the NYC School Bus Strike see my other posts: 
What Will I Do If There's a NYC School Bus Strike
Are You Prepared For a School Bus Strike? on Parents.com

MAKE YOUR VOICE HEARD - please sign the petition started by Miz Kp of Sailing Autistic Seas!