Should Autism Moms Work?

Moms of children with autism carry a lot of guilt – what could they have done to prevent this and are they doing enough to recover their child? Add on top of this the work vs. stay-at-home question and you have a double whammy.

When my son was first diagnosed with autism, I was splitting my days working part-time at the office and part-time at home. I thought I had a pretty good balance as a mom. I had several therapists coming into our home to work with my son.

My husband and I worked fast and furious, long hours to pay for as much therapies as possible. We thought the more money we threw at him, the better he would get. And in some ways we were right. I would have not had any idea how to get my son to talk or to regulate his sensory issues. I had to sit and learn from the experts. In this regard, I have no regrets.

But, one day as I sat at my computer working, I listened to the therapist work on getting my son to call “Mom” when he needed something. I thought why am I zoned out over here instead of working on getting my son to engage with me? Shouldn't I be the one to teach him to call for me? Maybe if I quit work, I could be on the floor role with him. Would I have more energy to role play or talk back-and-forth with him? Maybe if I wasn't working at such a fast pace, I would have energy to roll the ball back and forth 100 times until he got the give-and-take of playing with others. I wondered if I was doing the right thing by not teaching him myself.

I read excerpts of the book Son-Rise about a mother who spent her days full-time engaging, playing and healing her son. (Here's more info if you haven't heard of his recovery story: http://www.autismtreatmentcenter.org/contents/about_son-rise/history_of_the_son-rise_program.php).

I felt a wave of guilt about not trying to be my son's own therapist or at least having much energy left over in my day to teach him to come out of his autism world. Would I regret not

So I took a big leap and quit my full-time job to do less demanding part-time work from home. I do not, however, regret the time I paid therapists to heal him. I had to learn from the experts, but I reached a point where I was ready to do a bigger chunk of the work. I knew I had to walk away from my career for a time to really work on my son's recovery. Now, I'm more available for him to have play dates where I can help guide him, I can joke around with him more or show him more things. I still do take him to some to expert therapists for Occupational and Speech Therapy, but it's a lot less now. So, I don't know the right balance for every mom who has a child with autism. But, I learned that when you are ready, you may just be your child's best therapist.

Note: This article was originally written for the newsletter of Autism Society of America, Collin County

Burn Out

I've been on this autism mom journey for at least 5 years now. My son is 7, but we started his treatments at age 2. I can hardly remember life before autism -- now it consumes me. I'm on a constant quest to read the latest treatments, causes and cures. The push to "fix" him of autism always burns within me. It's not over yet, but I'm starting to wonder what it would be like to have another passion. Yet, I can't go there until my son is in a better spot.

I never thought I'd tire of this fight to find him the "right" cure or therapy. I spend at least one hour, sometimes up to three hours, a day reading about biomedical interventions that might work or the latest research on autism. I subscribe to four list-srvs of various autism parent groups. I get constant e-mails from other parents of what they are trying and whether or not it's working.

Most of the time, I find this journey to be so beautiful -- reaching and connecting with my son. What more could a mom want to achieve? But, lately, I just feel less within me to give to autism. I still have energy to be his mom, but I wish I could just be that -- his mom. Instead, I have to put on the hats of behaviorist, medical expert, insurance fighter, educational advocate, vitamin dispenser, speech therapist and autism researcher. At times, I wonder if he even gets enough nurturing from his mother. By the time I fill all the other roles required of an autism mom, I don't much feel like just being in the moment with him. I wonder what I used to be passionate about before my autism journey began, what it felt like to not have this on my mind 24/7. I sometimes miss my old self. I'm so grateful when people do want to know how my son is doing, yet miss how people used to talk to me about politics or sports or something light. Now its, "how is his speech?" "Are the b-12 shots working?" "Do you do the gluten-free diet?"

Don't get me wrong, this journey has had more gains than losses. I have learned to love more deeply, appreciate life more fully. I just never thought I'd reach burn out level -- and it makes me feel so guilty. How could I burn out of healing my own son?

One Mom's Surprises

I posed the question to a group of moms about what their biggest surprises were in raising a child with autism. This one mom's response was very moving:

I'm surprised at how confused I feel at times...

I'm surprised at how unafraid I am...

I'm surprised by the fear that comes on unexpectedly, or how an article I read can dig a hole so deep within me that it wakes me in the middle of the night... that it hangs over me like a night in a smoke filled bar ...

I'm surprised by how strong I am...

I'm surprised at how much I adore what I thought once would be my worst nightmare --- that being my son with autism.

I'm surprised that I'm open to learning, and trying, as I'm a one way kind of girl... don't like change, find my sweet spot and keep going...I'm surprised that my son's "sweet spot" continues to change --- I'm surprised that fact surprises me...

I'm amazed at how faithful God is in my life --- and how much my family has grown because of my son ---

I'm surprised at the love I feel for my mother-in-law when I watch how much she loves our son with autism... I'm surprised at how much she respects me after 21 years, that it took this...this something awful and unexpected as well as beautiful to enable her to feel kindness and fondness for me, that after years of wondering why a girl like me with the wonderful friends I have, could have a mother-in-law that just didn't get her --- to this, and now she does...

I'm surprised that my first born NT daughter...the girl who hung the moon who got all of me, all of me, the one I nurtured for 3 1/2 yrs before autism, is so OK with her brother with autism, and with me spending time with him... she is growing every day in her depth of love for her brother and for those around her like him...

I'm surprised at how outspoken I am, and how much I fight for my son... I've always been a people pleaser, to a certain extent --- on the outside not at all but deep down, very much so...

I'm surprised at how much I love him, how much hope I have for him, how much he makes me laugh, how angry I can become with hours of screaming, and yet my love never grows weary, and if it does, I'm renewed again in the morning...

I'm amazed at how much less private I am --

At how much I need people --

At how much I need mom's that in other circumstances I may or may not choose as friends --- and that we can even enjoy one another even though we are so different, or so alike -- just because we have one thread in common...that being Autism

I'm surprised, I answered this question --- but then again...I'm less afraid, less private and lots of other "lesses" and mores...

More Autism Parenting Surprises

There are so many good thoughts people have shared about what surprised them most about raising a child with autism. I've added more surprises other moms felt so others can benefit:

1. How some people out in public can be so very nice and helpful, while others can be so unsympathetic.
2. Although there is lots of hope, I had no idea how long ahead the road would be -- the cost, uncertainty, isolation, difficulty of keeping the kids safe and the confusion over treatments.
3. The isolation of not feeling a part of the community of typical parents.
4. The battles you will fight for your child at school, how you have to become a legal expert to get the services needed. You will sit in long, painful meetings with the school and often just have to agree to disagree. In some instances, you are blessed with principals and teachers who get it!
5. It'll amaze you how much you need to know about the brain and how much autism can be a brain-gut connection. You have to do all the research and work tirelessly to heal your child.
6. I was surprised by how "stressful" this would be on the entire family.
7. I was surprised at how pervasive this would be and thought, naively, that the speech delay would be essentially the only concern.
8. The stimming really shocked me -- the verbal stimming, the visual -- and that it would seem worse in some ways as they get older and it stands out more.
9. A pleasant surprise -- I did not know how connected parents of autism children would be -- that so many parents would be working together to share ideas, to help others and to beat this thing.
10. I was shocked at how hesitant to talk about autism my pediatrician was or how little they know about autism. Most parents end up telling their pediatricians they have autism.
11. I was surprised there was not a one-size-fits-all treatment plan that would cure autism. A parent has to dig through dozens of therapy options, from Floortime to ABA to biomedical treatments, and sort out how much and how fast you can spend on it.
12. I was amazed how slow experts were to point you in a particular direction. I once sat in a developmental pediatrician's office for over an hour while my child with autism flapped his arms at the lights and the crinkly paper on the table. Not once, did the doctor recommend occupational therapy or biomedical treatments or even a basic sensory integration treatment.
13. I was stunned at how even grandparents of ours did not know how to respond when my child was having a tantrum or meltdown or just overreacting to the tiniest of things. It can feel very isolating within a circle of extended family to be dealing with a child with autism.
14. I was in disbelief that there were so many good success stories out there in dealing with autism and yet it took me years to gather the information.

More Autism Mom Truths...

Here's what other moms say surprised them about raising a child with autism:

1. That this wasn't just two years of therapy and then we would get on with our lives. That autism became our life.
2. Lack of support and knowledge from the medical community!
3. The parents are leading the way to healing the children.
4. The divisiveness (genetic vs environmental)among support groups and parents. Really a shame.
5. The extremely high costs and endless waiting lists (yes about $4000/month and a 12 month waiting list--so much for early intervention).
6. That I would have my life revolve around health this early in my life. I am like a 90 year old man sitting around talking about my ailments.
7. That I would learn to appreciate every little gain that my daughter makes, and that I will never take for granted the typical development of my two boys.
8. That I would gain a compassion for others that I didn't know I was capable of.
9. That I learned most of the information worth knowing from other parents.
10. Lack of answers and ambivalence to uncover them in the search for an autism cure are shockingly lacking.

Truth About Being an Autism Mom

Lately moms who spill the truth about motherhood have been getting a lot of press. Oprah interviewed moms who spoke about how hard motherhood really can be and the lack of other moms giving you the full truth about it. There's also a Dooce.com, the "mother of all bloggers," who draws mothers in by admitting to the difficulties of early mornings, gross bodily fluids and more.

While I applaud these women for their honesty, I also want to provide a place where autism moms can be just as candid. There's dozens of things you don't dare tell a mom with a new autism diagnosis.

So, here's my top 10 surprises in raising a child with autism:

10. Autism children need very little sleep. I still have nightmares of all the times I've watched Disney's 'Jungle Book' from 2-5 a.m.
9. Most autism children don't like very many foods. I wish my child came with cooking instructions, all the tricks my mom raised me on didn't work.
8. The first thing I think about when I wake up is getting my son's vitamins and other supplements in him so I can enjoy my day.
7. I had no clue how often I'd be paying attention to my child's poop... is it regular, backed up, what color and smell? These are all things the doctors want to know.
6. While grooming any child is busy work, try cutting the nails or hair of a child with autism. (We are talking hours of screaming!) See our earlier post on nail cutting called 'Sunday, Bloody Sunday'.
5. I never could have imagined the price tag of a child with autism -- the cost of therapies, lab work, doctor visits, educational testing. And you never feel like you are spending fast enough to heal them.
4. I was shocked at the guilt you'd feel that you haven't ever done enough to cure them of autism.
3. The tantrums and screams of a child with autism can disrupt the smallest of activities -- even going to the bathroom in quiet or trying to read an e-mail.
2. I never imagined the internal strength I'd need to find to withstand the judgments of others that I'm not just raising a brat.
1. Nobody ever told me how intense the joy is the first time your child looks you in the eye or says "I Love You!"

Autism Awareness in April

Some cool events to look forward to in April for autism, such as Yoko Ono Lennon unveiling a piece of art that will be auctioned off in pieces for autism research. When a cure for autism is found, the pieces will be put back together. Here's more about Autism Awareness in April.