Identity Crisis

I’m ready to tell you something.

*Deep breath*

I’m having an identity crisis.

Two years ago I transitioned from being a Mom looking for work, subsequently finding work and then struggling with balancing work and home (MBA Mommy) to being a Mom of a Boy with Asperger’s (MBA Mommy), leaving her job, ramping up on all things Asperger’s and then struggling with the daily challenges that come with having an extra special kiddo.

I’ve invested a lot in this identity. I’ve spent hours, days, weeks, months becoming the best damn MBA Mommy I could be. For myself. For my family. For my Z.

And then, a few months ago, that all changed. I may not be a Mom of a Boy with Asperger’s anymore.

And while I SHOULD be screaming it from the roof tops and jumping for joy, I’m actually struggling with it.

Let me back up a bit.

I’ve mentioned before, that Z’s progress has been nothing short of fantastic. And that we stopped his behavior therapy last summer but continue to do OT on a weekly basis, for his sensory needs. We also hired an aid to come into his class last fall to help with some behavior issues. This was short lived though because once she had a chance to teach his teacher some strategies, the issues went away. What I failed to mention was that when we switched OT’s last September, he was re-evaluated by the new OT. And said OT looked me straight in the eye and said (paraphrased),

“You know, he really doesn’t present as autistic. Granted, I’m not qualified to diagnose autism, but I’ve been in this business for 25 years and I’ve worked with a lot of kiddos on the spectrum. And we don’t see the eye contact, interaction and reciprocity that Z shows in kids diagnosed with autism. Now, I don’t know if he was mis-diagnosed before or he’s had enough intervention at an early enough age that some of the difficulties he had have now been overcome. What I do see is a very intelligent child that has sensory integration issues. And once we can address those challenges, I think you’ll begin to see a much happier and better behaved child.”

Huh.

Don’t get me wrong, it’s wonderful news. As are the follow up reports from teachers/administrators in his school that say he doesn’t stand out anymore. That a stranger coming into the room wouldn’t see any differences between Z and the other squirmy boys in the room. I have a hunch that if we got Z re-diagnosed he wouldn’t fit the criteria for Asperger’s Syndrome anymore.

So, why have I been so hesitant about announcing this wonderful news? Certainly not because my kiddo is gaining the skills he needs to be happy, make friends and succeed in school (please note that I didn’t say he’s cured of autism). No, I’m over the moon about that. I’m hesitant because, again, I’ve invested so much into this identity, this label, this way of understanding and relating to my child that I’m a little confused as to what these new developments signify. It’s a little unnerving to have continual dramatic shifts in your outlook on your life in such a relatively short period of time.

And, why am I hesitant to have him re-diagnosed? Certainly not because I want him to keep a label that has such amazing cache. No, I’m over the moon about that too. I’m hesitant because if he no longer has a diagnosis of autism, some of the service he still needs, regardless of the label, may not be available to him. Especially if the DSM-V does change the criteria for autism. John Robison, author of “look me in the eye” and “be different“, wrote a great post that summarizes his concerns of a criteria change —> here <—-.

I find myself thinking, yet again, “What now?”, “What next?”. Do I need to change my blog name to MBSPD (Mom of a Boy with Sensory Processing Disorder) Mommy? MSB (Mom of a Spirited Boy) Mommy? None of those fit right.

More importantly, what do I tell people about Z?

J, as usual, was able to cut through all my hemming and hawing and state the most important and obvious bottom line. After one of my many monologue diatribes he told me, “It doesn’t matter what the label is. We know our kid. We know he’s not a typical kid. We know he struggles with sensory issues and anxiety. But we also know what he needs. And, right now, he’s getting it. That’s really all that matters. Why change anything?”

And, as usual, J’s right. All that matters is Z (and S, of course). He’s getting everything he needs right now. He’s doing fantastically well even with the continued challenges he faces. It doesn’t matter what label he has, he’s still Z.

I’ve heard stories from other parents with kiddos that have an autism diagnosis about these shifts that come throughout the years. They call it the “best possible outcome”; when your kid has progressed enough along the spectrum that he essentially falls off it. Z is a testament to the importance of early intervention. If we hadn’t addressed his challenges head on with everything we had, it’s very possible he would be a much different child right now. A child who wouldn’t be able to handle a full language immersion program. One who couldn’t/wouldn’t show affection for his Mom or be able to play with his sister. One who was frustrated that people around him didn’t understand him. One who didn’t have the tools and skills needed to explain himself and instead relied on meltdowns and lashing out to get what he needs.

I am so grateful for the preschool teacher who, 2.5 years ago, told me something I didn’t want to hear. I am so grateful for all the angels who have gone above and beyond to truly see my son. I am so grateful for HIMAT and early intervention and J’s and my willingness to shove aside our ego’s and admit that our kiddo may need some additional help. I’m grateful for the support groups I’ve been a part of, the same ones I haven’t felt comfortable participating in recently given this new (and wonderful) development. And I’m grateful to everyone who reads and comments on this blog, letting me know that I’m not alone in this, that they get it and that they care.

I guess I’ll stick with MBA Mommy. It’s got a better ring to it. Besides, his/my/our story is far from over.

Last Night

Last night, my evening consisted of:

• Great kids eating all their dinner and happily splitting the last cookie for dessert
• Both kids in time out (z with his pants around his ankles) because i couldn’t get them to stop playing long enough to wipe them down (no bath tonight, my call)
• Every single fire alarm in the house going off at the exact same time (or triggered by each other? dunno)
• Me running around frantically trying to turn off said alarm because everyone was completely freaked out
• A dog who hasn’t left my side since said alarm (well, once she agreed with me that it was ok to come out of the closet)
• A failed attempt at reading books because kiddos couldn’t stop fighting over toys so i sent them to bed without books
• A failed attempt at discussing said punishment with sarah and telling her i wasn’t going to listen to her screaming and when she was ready to talk, i’d come back in
• A rushed shower listening to sarah scream at the top of her lungs “i’m ready to talk!”, not to be outdone by zach yelling “mommy, sarah says she’s ready to talk!”
• A rocking/calming down session with sarah while still in my towel
• An agreed upon second attempt at books, this time only one and mommy’s choice
• Two kids pulling out all the tricks to get me to stay in their rooms longer

• A zen mommy, never losing her cool

Stick a fork in me. I’m done.

Shut Up About Your Perfect Kid

I somehow have never mentioned this book on this blog. And, I’m a little baffled as to how that happened. Because I really should have. I mean, really really really should have.

My sis-in-law sent me this book about a year ago. It’s written by two (VERY funny) sisters who are raising special needs daughters. One daughter has asperger’s syndrome and one has bipolar disorder. Neither of which one would expect to be very funny topics. And, frankly, if I had read this book when Z was first diagnosed, I may not have found as much humor in it. I think you need to be at a certain comfort level with the diagnosis and your ‘new’ life to truly appreciate it.

But I read it at the perfect time. And, it made me cry from laughing so much. From their description of an IEP meeting to chatting with mom’s of “perfect” kids, it was perfect. Light hearted, informational and real. I totally wanted to meet these women and have SEVERAL glasses of wine with them.

And then I found out that it’s not just a book. That there’s a whole Imperfect Movement out there. There’s a Facebook page. There’s tweets (@shutupabout). And there are lots and lots of parents of special kiddos joining together in support of one another, embracing their (our) own imperfect-ness and our children’s.

And then….in all their glorious imperfect-ness, these “Shut Up Sisters”, Patty & Gina, didn’t update their blog enough. And they decided they needed to let their imperfect readers/followers have a voice. And they asked if anyone wanted to be a guest blogger.

Both of my hands shot up immediately. PLEASE, PLEASE, PLEASE, let me be a guest blogger!

And, guess what? They did.

My readership has skyrocketed. My ego has been inflated. My soul has been humbled. And, my writer’s block has been lifted.

So, thank you, Patty & Gina, for everything you do.

And, for those of you interested, BUY THEIR BOOK! (or borrow it from me!) It’s awesome!!!

Play To Your Strengths

My friend Rebecca over at unexpecting! recently invited me to write a blog post talking about Motherhood Lessons for MomsTalkNetwork. You should go read her post about what she’s learned as a Mom: nobody’s perfect. It’s awesome…and so, so true.

I find it ironic that she invited me when she did. I’ve been mulling this idea over in my head for a couple weeks now. There are a million lessons I’ve learned since becoming a mother almost exactly 5 years ago. Give yourself a break. Take time for yourself. Focus on your marriage. Give lots and lots of hugs. Take deep breaths in crisis moments. Cherish the kairos moments. Go to the gym. Etc, etc.

But, what resonates most with me, at least recently, is this idea of playing to your strengths. I mean…..

If you’re a coach of a football team, would you put your quarterback in as a linebacker?

If you’re a soccer coach, would you put your fullback in as your center forward?

If you’re a choir instructor, would you assign a tenor part to a soprano?

If you’re a manager, would you put your IT guy in front of your biggest prospective client?

Probably, not, right? You’d probably play your strongest team member…the one who has the natural inclination, the “at-bats” experience to succeed, the one who has spent time training just for this moment. Not the one who thinks the should be doing it.

So, why in the world do we do that in our daily lives?

I do it all the time when my brain gets going with the “shoulds”. I should be working. I should be stay at home. I should be doing more/less/different than what I’m doing right now. I have this ideal in my head of what my life should look like. And, guess what? It’s not. Not even close. And you know what? That’s ok. It’s more than ok, it’s absolutely perfect in its own imperfect way.

But, I struggle with reminding myself of that on a regular basis. When the should demons start up, that’s when I start getting annoyed at J because he forgot to bring S’s bunny to school when he dropped off the kids one day. Shouldn’t he know better? We ALWAYS bring bunny. And, now I have to go home, grab bunny, bring her to school, sneak in to S’s class without her seeing me and sneak out without Z seeing me through his adjoining classroom. Ugh.

The should demons guilt trip me into doing bath time with J when all I want to do is finish cleaning up in the kitchen, get lunches packed for tomorrow, and then kiss my sweet kiddos goodnight. Because frankly, I’m pretty much out of steam; it’s been a long day, after all. Instead, I force myself to help out, which annoys J because I’m annoyed with the kiddos, which makes for an unpleasant bed/bath time. And then I’m annoyed because after we’re done J sits on the couch and watches TV while I’m in the kitchen cleaning up, packing the lunches (God forbid I let J pack a lunch…he does it all wrong!) and wishing I could just collapse on the couch.

When, in reality, if I stepped out of the situation and did what I wanted to do, it allows J to have his daily quality time with the kiddos and me to finish up my tasks such that we finish at the same time and can collapse on the couch together.

The should demons force me to fight against the natural flow of what my life is. I don’t want to work full time (at least not in a role that requires me to work outside my home…but give me a WASM role that allows for some flexibility? I’m all over it.) and yet I feel like I should be contributing more to our family finances than I currently do. If I were completely honest with myself, I’d admit that I’ve got it pretty good right now. If those damn should demons would sit still and be quiet, I could look around and appreciate my life for what it is.

Here’s a few things I’m really good at: running the house, keeping the kiddos on schedule, running errands, taking breaks for myself, and working on and off throughout the day. I’m good at creating a balance with all the different things I juggle. After 5 years, I better damn well be a ninja master at it.

Here’s a few things I’m not really good at: missing the kid’s school activity because I have to work, spending all day in an office or traveling and not seeing the kids in the morning and at night, having so much stress weighing me down that I can’t see the kids for the sweet little rugrats they are, and letting J take some of the household responsibilities because he doesn’t do them the way I do. It’s not that he does them wrong, it’s that I spend waaayyyy more time at home and if something is off or misplaced or the wrong brand is purchased it annoys me.

So, why….WHY….do those stupid little should demons keep coming back and biting me in the ass?

That’s my biggest Mom lesson so far. Play To Your Strengths. Embrace them and live them like the warrior-ess you are. Recognize what you’re good at with this new life that includes dependents. Do them. And tell those should demons to go suck it.

An Ode To Shel

Listen to the Mustn’ts

Listen to the MUSTN’TS, child,
Listen to the DON’TS
Listen to the SHOULDN’TS
The IMPOSSIBLES, the WON’TS
Listen to the NEVER HAVES
Then listen close to me–
Anything can happen, child,
ANYTHING can be.

-Shel Silverstein

Listen to the Should’s

Listen to the SHOULD’S, mama,
Listen to the MUST’S
Listen to the OUGHT TO’S
The HAD BETTER’S, the WOULD’S
Listen to the HAVE TO’S
Then listen to your SELF–
She knows what can happen, mama,
EVERYTHING can be.

-MBAMommy

I Got Picked Up….Again!

So, you all are probably aware by now that I’m a guest blogger for Mile High Mamas, right? I’m still so fired up they see fit to post my musings……and yet, I’ve been so wrapped up in getting my act together in 2012 that I failed to notice they had posted another one of my guest posts. Here’s a link to it. I’m still so floored by the responses I’ve gotten from people via that venue. It’s just wonderful.

And, now, another amazing website has picked up my blog. Remember when I wrote about the documentary, Refrigerator Mothers? Well, unbeknownst to me, the folks who put together that amazing documentary also have an amazing non-profit called JJ’s List. The site is basically a review of disability friendly businesses…mostly in Chicago but nation wide as well. Amazing, right? (Have I beat that amazing horse enough yet?)

Anyway, someone at the company and I started chatting a while back and would I mind if she profiled my blog on their monthly D-blogger review? Well, of course not!!! What an honor!

But, I had no idea how wonderful the review was going to turn out to be. J calls it a “Siskel & Ebert” style review…and it sounds like I got 2 thumbs up. Take a look and spend some time getting to know JJ’s List. They’re pretty amazing.

Labels

I am….

a mother

a wife

a sister

a daughter

an advocate

a friend

an ear

a shoulder

a heart

a brain

a body

a life

a tear

a smile

a giggle

a tickle finger

a Mommy monster

a squeeze

a hug

a kiss

a hand

a sigh

beautiful

strong

willful

independent

curious

scared

unsure

confident

loving

angry

sad

joyous

…me.

I do…

autism

a job

an exercise

a meal

some housework

a lot of talking

a lot of reading

a lot of writing

some yoga

some meditating

errands

pick up/drop off

child care

driving

discipline

…things.

There’s a difference.

“No More Worthy Work That Needs To Be Done”

I talk a lot about special needs. I talk a lot about the personal education choices we’ve made for our children.

I don’t talk about it nearly enough. I don’t do nearly enough.

Here’s a few things I haven’t shared.

I was educated at a private school in Miami, FL because the public school system in Dade County is/was terrible. My Dad always talks about how he went to public school in Rochester, NY and got a great education but knew when he moved us down to Miami that my brother and I would wind up in private school because his property taxes were so low. Meaning, public schools didn’t get the funding they needed.

If I hadn’t gone to said private school, I would have gotten lost in the mix and probably dropped out of high school.

Because of the foundation in education I received, I went on to college and eventually graduate school.

Last year I applied to be a Broad Resident so that I could be a part of the change we need in our public school systems. Broad Residents are graduate level (mostly MBA) educated individuals who have a desire to make a change in our school districts. They are Change Agents. J always talks about how he sees a discrepancy between how we pay teachers and how we pay Wall Street. He thinks that the reason highly educated individuals (MBAs) don’t typically go into education is because there’s not a lot of money in it. MBAs generally go to consulting firms, Wall Street firms and brand management firms where they use their education and skills to further sell products and make money. They could be the change agents needed in school districts but don’t because they don’t get paid enough. The Broad Residency helps bridge that gap.

I wasn’t accepted into the program but it peaked my interest in what’s happening in our education system.

I have a vested interest in education because I have 2 children entering into the system. I chose a private school so my children can be fluent in two languages. I also chose this private school because of the smaller class sizes and higher levels of expectations of the students. Saying that, we have also chosen to live in Cherry Creek Public School District because other school districts in the Denver area are terrible and just in case the world collapses and we can’t send our kids to their current school, I won’t have to subject my children to a bad education experience.

I also have a vested interest because if the education system continues the way it does now, my children will be competing against peers from other countries for jobs. I’d rather them be competing against Americans.

I recently watched Waiting For Superman and was literally left speechless, furious and inspired to do SOMETHING. ANYTHING. I’d highly recommend watching it. If you need to borrow my copy, I’ll gladly loan it to you.

I just watched a video of Michelle Rhee speak at an Ace Scholarship luncheon here in Denver last year. I want to sit and listen to her and follow her and do anything I can to help her work. She’s truly amazing. Two things she said that truly hit home for me are: “There is no more worthy work that needs to be done.” And, “Don’t underestimate our children.”

I have been searching for something to do since all of this came to my attention. I don’t know if that something is in the form of a job, volunteering, or what. I know I could give money, but that seems to be too easy. I want to DO something. My biggest pet peeve in the world is inefficiency (just ask J, he knows) and if all these documentaries and speeches are correct, inefficiency is rampant in our education system. It’s a waste. It’s our fault. And it needs to change. I’ve been telling J for years that I’m tired of making money for a big company. I’m tired of doing something that I’m not proud of at the end of the day. Don’t get me wrong, I’m very good at what I do. And, what I do helps on a micro level – it benefits my own children enormously. But, my career to date can be summed up with the phrase of “putting heads in beds” (hotel slang). I’d like to do something more. Bigger. Better.

I am participating in a conference call with Michelle Rhee and her organization Students First tonight. Maybe this will help me in my search for that elusive something. Consider joining the call. It’s worth the time.

Refrigerator Mothers

I’ve had this post in mind for almost 6 months now, since  I first learned the phrase “Refrigerator Mothers” at one of the many autism related speaking engagements/conferences/workshops I’ve been to in the past few years.  I’ve finally been inspired to sit down and write it because of the Twitter trend #YouMightBeAnAutismParentIf. If you’re not familiar with Twitter, if you want a particular topic to be found, you can use a hashtag to qualify it. Then, people can search that hash tag and see what people are saying about it.

##YouMightBeAnAutismParentIf has been running for two solid weeks now. I’ve found myself spending quite a bit of time on it because I find comfort, support and a little bit of awe in what I’ve read. The overall themes are that these parents, no matter what, pour their blood, sweat and tears into their children. They fight, claw, crawl, shout, yell, haggle, negotiate, and write to make the world a better place for their child. To get the support their child needs to live a quality life. They read, educate themselves, become advocates not in the name of some higher good but because they have to. They’re the only ones who will. They’re the ones living with autism day in and day out. They do it at the expense of themselves. And they do it out of love and necessity.

Overall, the single thing that is most apparent is that these parents love their children. Fiercely, determinedly, unconditionally and forever.

Hmmmm….I keep saying “they”. I should probably say “we”.

It’s hard. It’s hard as hell to constantly be proactive with your kiddo. To be understanding when you’re really just a little tired and worn out. It’s hard to have to fight with insurance companies, our government, our schools, our jobs to do what we need to do for our kids. It’s hard to have to reconsider your entire life, refocus it, accept it for what it is and eventually embrace it.

But it used to be a helluva lot harder.

According to Wikipedia,

The term refrigerator mother was coined around 1950 as a label for mothers of children diagnosed with autism or schizophrenia. These mothers were often blamed for their children’s atypical behavior, which included rigid rituals, speech difficulty, and self-isolation.

The “refrigerator mother” label was based on the assumption that autistic behaviors stem from the emotional frigidity of the children’s mothers. As a result, mothers of some children on the autistic spectrum suffered from blame, guilt, and self-doubt from the 1950s throughout the 1970s and beyond: when the prevailing medical belief that autism resulted from inadequate parenting was widely assumed to be correct. Some present-day proponents of the psychogenic theory of autism continue to maintain that the condition is a result of poor parenting. However, others merely point out that some conditions are perhaps psychological in origin rather than physiological, and that this is not necessarily a reflection on parenting skills.

In 2003, Kartemquin Films released Refrigerator Mothers, a documentary that takes a look at American mothers of the 1950s and 1960s and the blame leveled by the medical establishment for the mothers causing their children’s autism. The documentary gives voice to women who no longer accept the blame that was once common for mothers of autistic children. Making its television premiere on PBS’s P.O.V. series, Refrigerator Mothers was featured in a January 2010 issue of Psychology Today that focused on the racial and class stereotyping of autism.

Take a look at the documentary. Go ahead, click the link and settle in. It’s a little long but well worth the time. And, don’t forget to grab a box of tissues. I’ll be here waiting when you’re done.

According to Bettelheim, autism is caused by the mother’s emotional rigidity. You got that, right? So, back in the 1950s and 1960s, if a child had autism, it was the mother’s fault. And the best solution was to institutionalize said child to get them away from their mother and put them in an environment that could work on undoing all the bad the mother had done.

If you saw the movie, Temple Grandin, you probably remember the scene in the beginning of the movie where Dr. Grandin’s mother is told just that. And she refused. But, she was one of the few. Imagine that you’re told your child has no hope of communicating, no hope of leading a “normal” life….and it’s your fault. And the best thing you can do for them is to put them in an institution. We’re so programmed to believe everything a doctor tells us, it’s no wonder these parents followed that advice.

We can look back now and think, “No, I’d never do that.” or “I can’t believe they didn’t fight, that they just accepted it.” But, hindsight is 20/20. I don’t think most of us would question that authority. Especially as women in the 50s and 60s. We’d do what they said we should do and then live with the guilt and questions for the remainder of our lives.

Things are better now. Certainly not perfect, but better. Yes, there are miles to go in fighting the school systems for IEP services, Fair And Appropriate Education (FAPE) and inclusive education. Miles to go in dealing with insurance companies and government policies. Miles to go to combat bullying and lack of acceptance. But I’d much prefer that over being told I was a Refrigerator Mother.

I think @jodigomes says it best in her Tweet:

@jodigomes #youmightbeanautismparentif you celebrate how far he’s come, but equally fear how far he has to go.

Welcome to the Club

Next up: Welcome to the Club.  Jess, over at A Diary of a Mom, is hands down my favorite blogger.  She makes me laugh and cry on a daily basis with her stories of her two beautiful girls, one an NT and one with PDD-NOS and pervasive anxiety.  Honestly?  I just want to hug her and grab a cup of coffee with her and chat for a day or two.  She’s THAT amazing. Please, click on the link and go over there and read her post. It’s well worth it.