MBA Mommy

Part MBA, Part MRS, Part MOM…..All ME

Posts Tagged ‘autism’

Identity Crisis

Posted by mbamommy on March 8, 2012

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. :)

Posted in ASPERGER'S, AUTISM, MOM | Tagged: , , , , | 8 Comments »

Shut Up About Your Perfect Kid

Posted by mbamommy on March 4, 2012

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!!!

Posted in ASPERGER'S, AUTISM, MOM | Tagged: , , , , , , , , | 4 Comments »

I Got Picked Up….Again!

Posted by mbamommy on January 22, 2012

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.

Posted in ASPERGER'S, AUTISM, MOM | Tagged: , , , , , , | Leave a Comment »

Refrigerator Mothers

Posted by mbamommy on December 5, 2011

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.

Posted in ASPERGER'S, AUTISM, MOM | Tagged: , , , , , | 16 Comments »

Welcome to the Club

Posted by mbamommy on December 1, 2011

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.

Posted in ASPERGER'S, AUTISM, MOM | Tagged: , , , , , , , , | Leave a Comment »

Here We Go Again

Posted by mbamommy on November 30, 2011

Have I mentioned how much I love living on Colorado? If you happen to follow me on Twitter, you know I’ve mentioned this 1 or 2 times before (ok, fine, it’s round about 100+ at this point). Living in Colorado, I get to make a last minute decision to go skiing for the day, I get to experience 60 degree weather on November 30 only to have it followed by 20 degrees and 3-5 inches of snow on December 1. And, no matter what. No matter what else is going on in my life whether it be good, bad or indifferent, I get to look out my window and see the mountains. It really doesn’t get much better than that.

But, another HUGE reason why I love living here is because I get to continue being a guest blogger for Mile High Mamas. Once a month, they post something I’ve written about Asperger’s and Autism. We only started a few months ago so I’m still telling the story of Z’s diagnosis (haven’t read that yet? Here’s part 1, part 2 and part 3). But, I’m excited to get further into what it’s like living with autism. At least from my perspective. It’s an amazing opportunity to advocate and educate. And, frankly, I love seeing the responses I get over there.

So, take a look, follow them on Twitter, Like them on Facebook. They’re a great website, especially for Colorado Mamas, NT or no).

Posted in ASPERGER'S, AUTISM, MOM | Tagged: , , , , , , , | Leave a Comment »

You Might Be

Posted by mbamommy on November 29, 2011

So, along with this blog and Facebook, I dabble in Twitter. I can’t say that I’m a big user of Twitter. I tend to go in spurts, tweeting a lot for a week or so and then falling back on it. Honestly, with everything else I try to keep up with I just don’t have the time or inclination.

But there’s been a shift recently. A few weeks ago someone started the hashtag #youmightbeanautismparentif and I somehow got wind of it. And then, all of a sudden, my Facebook updates dropped off, checking my email dropped off and I found myself reading other parent’s tweets throughout the day. And tweeting like crazy myself.

Some of my favorites are:

@red_ambert #youmightbeanautismparentif helping another autism parent means just listening because you understand what they are going through.

@Jasonoldfield #youmightbeanautismparentif you have a therapy room as a living room

@diaryofamom #YouMightBeAnAutismParentIf the next person who tells you that God doesn’t give you more than you can handle might want to duck.

@trydefyinggrav #YouMightBeAnAutismParentIf you ignore the judging eyes of others and instead seek out the knowing nods of “us too”.

@helenhamill #youmightbeanautismparentif you wouldn’t change your child for the world- but want often to change the World for your child!

@KristinMacchi #YouMightBeAnAutismParentIf you’ve thought about including your ABA therapist in your family holiday photo.

@trydefyinggrav #YouMightBeAnAutismParentIf you are a first responder, teacher, therapist, event planner & financial planner rolled into one.

@DrKyle #YouMightBeAnAutismParentIf your child tells a lie and instead of getting mad you think, “Great! We’ve finally hit that dev. milestone!”

@ghkcole #youmightbeanautismparentif you prep to watch parenthood by getting a box of tissues

@robsavva#youmightbeanautismparentif you have to work out if they are being naughty or autie.

@hollyrpeete #youmightbeanautismparentif you are amazed at how much more compassionate kids can be than their parents #autism@HollyRod4kids

And a few I’ve posted myself:

@mbamrsmom #YouMightBeAnAutismParentIf you love that there’s more awareness for #autism #aspergers but hate that it’s because of more diagnoses.

@mbamrsmom #YouMightBeAnAutismParentIf scenes from next week’s #parenthood where Max goes missing terrifies you.

@mbamrsmom #YouMightBeAnAutismParentIf ur friend’s offhand comments abt their kid lining up their toys and not looking ppl in the eye makes you pause.

@mbamrsmom #YouMightBeAnAutismParentIf Dr. Temple Grandin is your hero

@mbamrsmom #YouMightBeAnAutismParentIf you know what a puzzle piece really means

@mbamrsmom #YouMightBeAnAutismParentIf you know what Steve Jobs, Albert Einstein and Bill Gates all have in common

@mbamrsmom #YouMightBeAnAutismParentIf a staycation is more relaxing than a vacation

@mbamrsmom #YouMightBeAnAutismParentIf weighted vests are a piece of everyday clothing not just for a workout

I’ve thought a lot about this list since I discovered it. I’ve read things that have made me laugh, made me cry and made me cringe. Some have made me think “Wow, them too!” and others have reminded me that it could be much much worse. I’m surprised by how many people are out there raising their voices and how much understanding and acceptance they have. I can imagine these other parents reading along with my same half smile on their faces and tears in their eyes.

What I find most striking is the sense that everyone has a love/hate relationship with this Twitter feed. We all seem to be saddened by the fact that it’s been created. No one chose to be in this club. No one truly wants to be involved. But, there is a need. And we’re all thankful as hell it’s been created. It feels like a collective sigh of relief to be able to take a step back from our day to day lives and find the humor in it. To laugh at the bittersweet-ness of it all.

So, go onto Twitter and do a search for #youmightbeanautismparentif.  You may be surprised at what you find.

Posted in ASPERGER'S, AUTISM, MOM | Tagged: , , , , , , , , | 2 Comments »

A Hairdryer Kid in a Toaster-Brained World

Posted by mbamommy on November 27, 2011

This is a series of posts written by MOM-Not Otherwise Specified.  She’s compiled all the links to the series into one post, which I’m re-posting here.  Post. Post. Post.  I HIGHLY recommend reading all of them more than once.  And, if you have a kiddo on the spectrum and want to speak to his/her class about autism, print these out and use them as a guideline.

A toast to inclusion: Autism education in the classroom

Posted in ASPERGER'S, AUTISM, MOM | Tagged: , , , , , , , | Leave a Comment »

Welcome to Holland

Posted by mbamommy on November 21, 2011

I’ve decided to re-post/link to a few things I’ve read over time.  No, this is not a way for me to get someone else to write my blog posts for me (although, I guess, they are…so thanks!).  It’s more of a way for me to broaden their messages.  And a way for me to show these writers how much their writing has affected me.  I’ve sent people to their sites multiple times and now I can have a link that my readers can use to find their words.  They’re so impactful. And….I couldn’t have said it better myself. (oh yeah, I went there).

First up: Welcome to Holland.

WELCOME TO HOLLAND

by
Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this……

When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”

“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”

And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss.

But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.

Posted in ASPERGER'S, AUTISM, MOM | Tagged: , , , , , , | Leave a Comment »

Progress

Posted by mbamommy on November 1, 2011

Remember —–>this<—– post about Halloween and snow?

Well, it can go suck an egg.  Not only was trick or treating a complete and utter success this year, but Z even let S ring the doorbell WHENEVER we told him to (meaning we didn’t prep him!!!!!).  Take that “inflexible to transitions”.

And, his comment to me on the first snow day?  “Mommy, can I wear my snow boots and snow jacket and hat and gloves EVERY day?”

Take that “sensory issues”.

Posted in ASPERGER'S, AUTISM, MOM | Tagged: , , , , , , | Leave a Comment »

 
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