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?

Where Oh Where Did October Go?

It's October 23rd and we have yet to pick an apple or a pumpkin.   

At this point, we probably won't.   Come to think of it, we haven't done anything that screams fall family fun.  (Like go to the Great Pumpkin Blaze.) I feel bad about this.  I hate feeling as if I'm not doing enough for The Boy.  But it's been a tough month for all of us. Even our poor Betty Blue Subaru has taken a beating. 

Oct 2010: The Great Pumpkin Blaze

Fall 2010 HHG class trip

Fall 2010 HHG class trip

This morning I told The Husband that we need to buy The Boy a Halloween costume. 

"Why?  We have 2 more weeks," The Husband says.

"Um no.  We don't.  It's next Monday."

So we set off in search of one. Arriving at Store #1, The Boy said "Yes!  I love Halloween!"

 

Inside Store #1 was a MAD HOUSE.  And the process was dramatic.  Wait on a line.  Then pick out your costume from the wall.  Then wait for someone to bring it out.  The line wrapped around to the next aisle.  Navigating the crowded  store with The Boy was difficult.  Especially with bins of candy EVERYWHERE. 

Store #2 was not at all crowded.  But The Husband didn't approve of the costumes.  He sort of takes this Halloween stuff seriously.  So we left to Store #3.  On the way to Store #3 The Husband says, "Hey Babe, did you know the McRib is back?"  The Husband and I discuss the big issues.

Store #3 was a success!  Now The Boy has a cool costume - one that The Husband is extremely proud of.  (You'll see those photos next Sunday.)  

This is the first year, The Boy seems to be really excited about Halloween.   When he saw the plastic pumpkins in Store #3, he said "We need to find the perfect pumpkin!" 

At this point, we won't have the time to go and pick the perfect pumpkin but there's nothing stopping me from just going to the supermarket to buy one.

And there's one more weekend left in October.  I will make it up to him.

Tonight we'll read his favorite Halloween books (Good Night Goon and Happy Halloween Little Critter) at bedtime.  Maybe we'll even watch It's the Great Pumpkin, Charlie Brown.  

I tell myself that it's not always about where we go or what we do - so long as we are together.  

The Boy waiting patiently for  lunch

  
What's a Sunday like in your City?  My Sundays are pretty boring lately - but the folks over here seem to know how to have a good time.  Unknown Mami's Sundays In My City.              

This Too Shall Pass

There are days when I just try to keep my head above water.



And days when I feel like I am drowning. 



But I know that I will emerge, stronger than before.




*photos from Flickr: Creative Commons

You Know You're Doing Too Much When

Your kitchen starts to look like this

 

And your living room resembles

 

 You have months of paperwork & bills that you need to sort through

And your Friday & Saturday nights look like this...

 

instead of this.

 

And your Saturday & Sunday afternoons are spent here

 

When you really want to take your kid here

 

The thing about trying to do it all, is that you really can't.  I'm learning that this week.

 

 It's exhausting.  I need to start slowing down.

How do YOU know when you're doing too much? 

Managing Screen Time. Easier Said Than Done.

My name is Lisa and I am a Screen Time Junkie.  I  love television: documentaries, trashy reality, sitcoms, dramadies, comedies, soaps.  I watch the Home & Garden channel like nobody's business!  And I don't have a home or a garden. 

And oh how I love watching movies! I could easily spend an entire day on my sofa, committing myself to movie marathons - like Star Wars or Twilight.  The Husband is a video game playing fool - we have every system: Play station, Wii, Xbox, the Kinnect.  And we are all about our computers, laptops and iPad. 

So we were never those parents who said we'll never allow our child to watch TV or  set a time limit on TV.  We're bad.  Bad bad parents.

Then there are those parents who so smugly say "we don't allow our children to watch television."  But then these kids are allowed to watch dvds like Dora or the Backyardigans.  Those parents kind of make me laugh, because seriously - who the heck are you trying to kid with your holier than TV thou attitudes?  Screen time is screen time.        

Anyway - we've all been there.  In those meetings answering questions about our kids.  The one I absolutely dread is: How much screen time do you allow your child?  (Screen time is essentially any time you allow your child is in front of a screen: computer, tv, iPad - even Leapster.)  And I'm always honest.  It's about 1 - 2 hours a day and on the weekends, probably more. (Way more, depending on the weekend plans and weather.)  And then I hear: you should try to limit it or manage it.

Easier said than done.   

Monday to Friday - The Boy has a full schedule.  The bus picks him up at 7:19 am.  From 8:30 am to 2 pm he's in school.  He's home by 3:15, then he eats and rests for a bit.  And then from 4:30 to 7 pm, he has therapy (either SEIT or Sensory Gym).  That's a pretty long day for a 5 year old.  So if after all is said and done, he watches an hour of television - who is it going to hurt?  Because there is dinner to cook and dishes to wash.  And as much as I'd love to spend my every second working with The Boy.  I know it's not possible and I don't want it to be.  Sometimes I just want to be his mom, not a therapist in disguise.  Sometimes I need it to just keep him company, so that I can get stuff done.  Sometimes I want to sit with him and watch cartoons. 

But there are teachable moments when watching TV with your child.  Ask him/her questions.  Start a conversation about what you're watching.  While watching TV, I always ask The Boy how a character is feeling or what happened?  If there's singing, I ask The Boy to sing along or dance.  The Boy almost always complies.   

As for the computer and iPad - especially the iPad - they are the best things ever for The Boy.  And like TV, it's something he is willing to work for.  And he enjoys it.  He works on his hand/eye coordination while using the iPad. He engages us in conversation while using it.  He makes requests.  He makes eye contact and uses full sentences - and every word is clear enough that even a stranger could understand.

Why do we want to manage that?  We want to encourage it!     

 

Ultimately, we give The Boy balance.  Yes, we let him watch TV and use the iPad and Leapster.  We really have no set clear cut boundaries.  (Other than making sure, anything he watches is age appropriate - obviously.)  But we read to him - every night.  And we talk and ask him questions about his day.  Sometimes he tells me.  And we sit and do puzzles and play turn taking games.  And we engage him in pretend play.  And when we play, we use scripted speech memorized from television and then we try to make it more spontaneous.

And even on those rare Saturday afternoons when I'm catching up on laundry and cleaning and cooking, when The Boy watches 3 to 4 hours of straight television.  I don't feel guilty.  Because I also know he's not sitting still the whole time completely absorbed in what he's watching.  He's running back and forth and playing with toys and reading books - often using the TV as background noise.  And because I know there are days when he doesn't watch any television at all.  And I'm reasonable enough to know that an afternoon of hardcore TV watching isn't going to be his downfall.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~                           

The American Academy of Pediatrics (AAP) recommends that kids under 2 years old not watch any TV and that those older than 2 watch no more than 1 to 2 hours a day of quality programming.  For more on television and children's health, please refer to the KidsHealth.org article on how TV affects your child and PBS.org article (FAQs) on children and media.

Out of sight. Out of mind?

I arrived late last night from AWP - my very first writers conference. The two day break felt good. To be in the presence of writers, editors, professors, agents and students who all shared my passion for writing was inspiring.  Exciting.  Promising. To do something specifically and selfishly for myself felt good. And I felt guilty.    


While away I had a nightmare. I was in a hotel with The Boy when I sent him away to go home on his own.  To get on the train by himself at five years old.  A five year old boy with autism, forced to find his way home via public transportation.  I abandoned him.  In my nightmare, I felt guilty for sending him on his way and left the hotel to find him.  I walked up and down the street and I couldn't find him.  Then I woke up.


That morning, I called home to make arrangements for The Husband to pick me up from the train station and asked to speak to The Boy.  (The Boy hates talking on the phone.  He'll say hello and then push the phone away.  And if he allows the phone to be held to his ear,  he'll stay silent, breathing into the phone.)  I felt lucky to get a "Hi Mommy."    


Then The Husband asks The Boy: Do you want to go pick up Mommy? 
The Boy responds: NO!  I do not wish to pick up Mommy.


The Husband laughed.  But I was hurt.  Was The Boy angry?  Did he feel abandoned?  Did he even care that I was gone? My guilt was confirmed.  I had abandoned both my son and husband.  To do something for myself.  I was spending money, money that could have gone into the savings for an attorney or advocate.  What kind of mother was I?


When I finally arrived home late last night, The Boy was still up, laying in his bed.  (Our neighbor was watching him.) I crawled in beside him, kissed his cheeks.  He smiled at me, his hands touched my face - he lifted up my glasses as if to confirm it was really me.  He looked me in the eye - really looked at me and continued to smile.  He wasn't angry.  He didn't feel abandoned.  He had, in fact, missed me.  It wasn't a natural emotion for him to convey or even understand. But I knew, he was happy to see me.  That my presence made a difference.  He let me snuggle against him and he wrapped his hand around mine not wanting to let go.  

Milk & Bread: Food Staples or Enemies of the Table

This morning The Boy asked for milk – demanded, is probably the better word.  We ran out of milk last night and I was too tired to run out and get more.  I don’t drink milk, and The Husband only drinks it with cookies.  But The Boy – he can drink it all day long.  Guzzling it straight from the carton (I know, kind of gross – we’re working on that).  There are mornings when I wake up and find the refrigerator door open – the gallon of milk on the floor with the top off.  And I know at some point during the middle of the night, The Boy woke up, walked to the kitchen, gulped down some milk and went back to bed. 

Whenever I see him chugging his milk like a frat boy chugs beer, I can’t help but wonder if I should’ve have stuck to the GF/CF diet. Is milk doing his little body good?  Or is it holding him back from further development? [According to one theory, some people with autism spectrum disorders cannot properly digest gluten and casein, which form peptides, or substances that act like opiates in their bodies. The peptides then alter the person's behavior, perceptions, and responses to his environment. Some scientists now believe that peptides trigger an unusual immune system response in certain people.] 

A few weeks after his original diagnosis (May 2008), I decided to try the diet.  I went through my kitchen cabinets, cleaned out my refrigerator and went on a food shopping spree.  Do you know what food products contain Casein or Gluten?  EVERYTHING!

I read the nutrition labels of packages and opted for organic and all natural ingredients.  So I replaced regular milk with Almond, Soy, Rice & Hemp – unsure of which The Boy would prefer.  I purchased Tofutti (dairy free) ice cream and Gluten Free cereals.  And eliminated a staple from his diet: The Peanut Butter and Jelly Sandwich. 

Starting the diet was expensive – do you know how much a tiny carton of almond or rice milk costs?  And living in the Bronx , GF/CF products were not only harder to find but more expensive. (Though, now as my neighborhood is becoming gentrified - there are more GF/CF options.) So I found myself food shopping in the city during my lunch hour and lugging bags home on my way home from work.

I wish I could say that starting the diet was the hardest part.  But have you ever tried convincing an old school Puerto Rican grandmother that milk/milk products and bread needs to be eliminated from a child’s diet? 

My mother and I disagree on a lot of things – almost everything.  But this decision made Carmen crazy.  (I often refer to my mother as Carmen, though not to her face – I’ll get slapped.) 

“What do you mean no milk and bread?  He needs his milk.  You are taking away all the things he loves!”  She yelled. 

“He’s two Mother.  He doesn’t know what he loves.”

“Hmpf…we’ll see.”  And I knew this meant that when he was with Abuela, she would give him whatever he wanted – gluten free/casein free or not.

At the time, no one was supportive of my decision of going GF/CF.  Not our pediatrician, not the ABA therapist, not my mother, some friends. 

So after a few months of doing it (kind of half-ass), I gave up.  He was making strides with the Early Intervention therapists and was about to start a center based program.  And I didn’t know if his improvement was due to the therapy or the diet.  So we went back to milk, ice cream and gluten filled cake.  And secretly, since quitting I’ve carried this guilt around, feeling like a mother failure. 

Like all else Autism – there is so much debate and nothing truly conclusive.  Ask five different moms/doctors/therapists and you’ll get five different answers.  So what is a mom to do?  Give it another go?  I know that if I decide to try it again, I need to give a full six months and document the results.  And now that he's older and knows exactly what he likes and doesn't like - it will be so much harder.  Am I ready for that?  Am I selfish for not willing to commit and try again? 

Would love to hear your thoughts/stories on living GF/CF!