Neurodiversity: The New Typical-Revisited

[Ed. note:  I originally wrote this piece in 2011. Four years ago! Now it’s 2015 and  today I saw a post by the wonderful and amazing John Elder Robison sharing information on a new book coming out by Steve Silberman called NeuroTribes: The Legacy of Autism and the Future of Neurodiversity. I felt it necessary to revisit this post (with minor edits) to hopefully get people thinking!] 

There are so many things I wish, hope and dream for my son; so many things for each of my kids, which includes not only Henry but his two “typical” sisters. Of course, I wish for them to be happy, productive, good citizens. I feel that is a given. So, aside from that, what do I really wish for them?  Henry in particular? I wish for them to be accepted for who they are, as they are.

This is not to say that I don’t want programs and therapies specifically to help my son. I do! As many as possible with a lot of options and opportunities.  This is also not to say that I want or expect the world to accommodate my son’s differences completely. He needs to learn outside his comfort zone too. This is how we grow. There would be room for research, of course, for those looking for new therapies, for a cause, for a “cure”.

What I am looking for is a world that will accept him, understand him, and still want to know him, to like him, to value what he contributes to the world. All of that despite that he doesn’t think the same as others. He sees the world differently.

How can we accomplish this? Where to begin? Education. Education. Education. Education for teachers. Education for our kids’ peers! And with this education comes mentoring for our kids. All kids! How awesome would it be if ALL teachers were special education teachers?!?! Wouldn’t ALL of our kids benefit from that? I know my littlest “typical” girl does! She was a model student in an integrated special education preschool class. It was a wonderful experience. We all learn differently. How amazing and different our world would be if we ALL had a special mentor growing up! This, ideally, needs to start EARLY.

I would love to see my son in an environment where sometimes when he feels he must make strange space noises or talk to himself, those around him, his peers, will be okay with it. They would understand and not think anything of it. He would have opportunities to walk away from a group project or game when it simply becomes too much to interact or be close with others and be welcomed back when he is ready to continue contributing to the group. A place where everyone feels comfortable and everyone’s differences are accepted.

This subject is so important, so vast. We have much work still to do. But perhaps, for those who run across this blog, it will get them thinking and sharing and collaborating. Perhaps someday we will no longer have to put the word typical in quotes when referring to some of our kids. No more “NT” kids. All of us would be considered ND. Neurodiverse. The new “typical”.

Riding Shotgun

[ alternatively titled: the Rabinowitz Bubble Revisited]

Today is officially our first full day of summer break.  I haven’t written much over the last several months.  Well, let’s be honest.  I haven’t blogged at all.  I’ve really missed writing here but for me to write something down it takes time, quiet, and a lot of emotional and mental energy; none of which I’ve had much of this past school year.  At least regarding autism.

I’ve also had trouble coming up with something to write about.  All-in-all it’s been a pretty “typical” year for the Rabinowitz tribe.  Yes, autism still lives with us.   Autism has challenged us.   And, in the moments when I’ve watched Henry try to connect with some of his peers or not be able to do an activity because of bugs, autism has also broken my heart.  But that’s normal for us; the way things just…are.  I’ve written before about what I call The Rabinowitz Bubble.  That’s where I’ve been living this past school year.

We’ve had great successes and we’ve had challenges.  More often than not, I’ve shared small snippets of these on my Facebook page.  And that’s been enough for me.  In our family bubble I don’t feel the need to go into every minute detail of our lives and what living with autism is like for us.  It just IS.  When I think about it, that’s the big part of my not blogging these last many months.  Because really, “typical” is rather “boring” isn’t it.

I’ve enjoyed being “boring”.  As many, many (too many, really) of you know, autism is often a daily, 24/7/365, in-your-face, way of life.  This past school year I’ve been able to scoot it aside, for the most part, and let it sit next to me.  It’s refreshing.  I’ve been able to concentrate more on building a business. (Yeah, that’s a shameless plug. Deal with it.)  I’ve also worked on my fiction, both reading it and writing my own.  I’ve been able to become more involved in Molly’s high school band.  Although, that’s a bit insane of me.  I’ll admit I’m not sure what I was thinking on that one!  And even more crazy for me is, as of 6 weeks ago, I began running.  Well, technically “wogging” (walking/jogging) but still, Runkeeper calls it running.  So, “running” it is because it makes me feel better about the whole madness of it.  I’ve actually been able to go a few hours without thinking about autism at all!  Seriously.  I can hardly believe it myself!  I think I must be learning to compartmentalize it better.

All of this gives me hope that perhaps, some day, autism will take a backseat in our lives.  Yeah, I’m sure at times it will be one of those annoying backseat drivers and even occasionally jump back up into the driver’s seat.  That’s okay.  That’s what it IS.  For now, this summer, I’ll be content to let autism ride shotgun.

 

Score One for Typical!

Grant and I had a brief, friendly meeting yesterday with Henry’s Kindergarten teacher. I wanted to touch base with her face-to-face and chat about how Henry is transitioning from a part-day SSD preschool class to a full day mainstream Kindergarten class.

She begins by asking us if we have any specific questions or concerns. My deepest most pressing concerns at this point are things that I can’t seem to say out loud to her.

Do you really see my son? Deep down inside? Will you see how intelligent he really is?

Will you truly take the time to learn about him and guide him to be the best Henry he can be?

Will you understand his differences and accept him for who he is?

Will you understand that as his parents we want him to become a productive, independent citizen in his Kindergarten class and beyond?

Do you understand that we worry about his differences setting him apart (negatively) from his peers?

Do you know how much we want his first school experience to go well and hopefully set the tone for the rest of his school years ahead?

When I am unable to verbalize what exactly we are looking for from her and this meeting she takes the lead.

She tells us that Henry is doing as well as his peers. She feels she “gets” Henry. She can see where he is coming from and that their personalities seem to be meshing quite well. BINGO!  Tears begin to well up in my eyes. 

She talks of the positive things about Henry, things she likes about him. She tells us a little bit about his day and a few things she has been able to see from him in his short 10 days he has been in her class. She shares with us how she interacts with him specifically and how she runs her classroom.  She continues on  to say that she is not seeing any “weird” behaviors that make Henry stand out from any of his typical classmates at this point. She shares how he is interacting (or sometimes not) with his new classmates. He is transitioning well. She not aware of any issues with his other teachers (P.E., music, art). She assures us that if there are ever concerns that arise, she will not hesitate to let us know.

My son is adjusting and navigating “the typical”!  His teacher sees him. She is taking the time to learn about him, letting him be the individual that  he is yet guiding him in “the typical”. I am able to swallow that lump that has been sitting in my throat. I am able to breathe a bit easier.

Score: Typical 1, Autism 0, Kindergarten Teacher 100!

The Rabinowitz Bubble

Oh. Yeah. Autism. We have that here…I “forget” sometimes.

Maybe it’s because we’ve had some really great successes lately or maybe it’s because it’s a holiday and there are celebrations with fireworks and BBQ’s and carnival rides going on all over town; a blatant reminder of where we will NOT be. Perhaps it’s because our newest phase (and phrase) is “I’m scared”. Of everything. All the time. Probably it is all combined with the fact that Henry’s not sleeping at night which means Grant and I aren’t either. Whatever it is, I’m tired of it (literally). And bitter. And sad. I am sick of acknowledging and celebrating our many successes over the past several months only to get kicked in the gut with a reminder that autism is still around with meltdowns, inappropriate outbursts, echolalia, seemingly bizarre behaviors and sleepless nights.  Although it’s not like we can ever really “forget”…it’s some denial, wishful thinking, and hoping…and then there is the guilt for feeling all of the above.

I usually see the good things about autism. The amazing things about our son which are ALWAYS there too! His gift for building, his incredible imagination and way of seeing things around him! His sense of humor and clever mischievousness. His true intelligence! I wouldn’t want to change any of that.  EVER. Our son is perfect just the way he is…

I try to remind myself of how far we have come and our many successes, the great leaps Henry has made lately. These are great, positive things!!! His communication, dotted with insightful comments and thoughtful questions has really improved! His ability to handle visiting friends and family for HOURS is wonderful! Huge steps! This summer we have been able to get out more and more! We have adopted Aaron Likens’ phrase of “expanding our Kansas”. And we have had a lot of good times! But I notice, that the more Henry can handle these visits, the more we are able get out, “expand our Kansas” and hang out and visit with our “typical” friends and family, the more I am aware of how different Henry is; how different our family is. And then comes the gut-kick, that reminder, of how we are anything but typical. That all of these successes for us take so much damn work to get there… and a lot times doesn’t “stick” without a lot more work!

I guess that’s why I like our little Rabinowitz Family Bubble. Here, we are normal, typical, comfortable. Sure the sleep issues and outbursts and other assorted issues still occur but we can look at them as normal daily occurrences and just a part of our way of life. It’s okay. I can “forget” about the autism and comfortably think that EVERY family is like ours. Surely they must be. Right?

I don’t mean to imply that our “typical” friends aren’t wonderful and patient and accepting. They ARE and we are very lucky and truly grateful for these friends! But even as awesome as our “typical” friends are, there are moments, bits of awkwardness, where they just don’t always know how to talk to Henry or deal with his behaviors. I see this. I feel their awkwardness, their not understanding, and I then feel uncomfortable for them. I am embarrassed by Henry’s odd behaviors and inappropriate outbursts.

Now that being said, for our typical friends and family who read my blog, before you call us or email us…no, it is not YOU in particular that I am referring too! This is a generalized expression of our different experiences with our typical friends over time, here and there…so, please, no worries.  I am making no personal accusations or blaming or pointing fingers! It’s all good. It just is what it is. I don’t expect everyone to “get it”. God knows I don’t want everyone to “get it”. With 1 in 110 children born with autism, WAY TOO MANY families “get it” already!

Yeah. Autism. We have that here. We will always have that here. But today I don’t like it. I am not happy about it. I don’t want to even acknowledge it! Today I just want to stay isolated in our little bubble and pretend that we are normal. Typical. Just like everyone else. Another day, tomorrow probably, I will again be able to accept and even celebrate autism for what it is in our lives. Back to work. It will all be okay. But not today. Today I just don’t have the energy for it. Today working with autism hurts and I want to find comfort and respite in our bubble.

Neurodiversity: The New Typical

[Editor’s Note: I mentioned last night on my Facebook page, A Chameleon in the Spectrum, that I would making a post soon. This is not the post I referred to.  That other post will be coming soon.  This post has been sitting and stewing in my drafts for some time and my thoughts keep coming back to it and circling. I feel my thoughts and ideas about this one are not fully formed as the topic is so deep and far-reaching yet it’s time to put it out there and refine later.]

There are so many things I wish, hope and dream for my son; so many things for each of my kids, which includes not only Henry but his two “typical” sisters. Of course, I wish for them to be happy, productive, good citizens. I feel that is a given. So, aside from that what do I really wish for them?  Henry in particular? I wish for them to be accepted for who they are, as they are. I want neurodiversity to be typical.

This is not to say that I don’t want programs and therapies specifically to help my son. I do! As many as possible with a lot of options and opportunities.  This is also not to say that I want or expect the world to accommodate my son’s differences completely. He needs to learn outside his comfort zone too. There would be room for research of course, and a lot of it, for those looking for new therapies, for a cause, for a cure.

What I am looking for is a world that will accept him, understand him, and still want to know him, to like him, to value what he contributes to the world. All of that despite that he doesn’t think the same as a lot of us. He sees the world differently.

How can we accomplish this? Where to begin? Education. Education. Education. Education for teachers. Education for our kids’ peers! And with this education comes mentoring for our kids. All kids!

Just this morning Jess over at Diary of a Mom, got me thinking more about this with her most recent post. What do we want from our future educators, administrators, inclusion specialists? For me it really comes down to more and better education and mentoring for everyone!

How awesome would it be if ALL teachers were special education teachers?!?! Wouldn’t ALL of our kids benefit from that? I know my littlest “typical” girl does! She is a model student in an integrated special education preschool class. It’s wonderful! We all learn differently. How amazing and different our world would be if we ALL had a special mentor growing up! Mentoring needs to start EARLY.

I would love to see my son in an environment where sometimes when he feels he must make strange space noises or talk to himself, those around him, his peers, will be okay with it. They would understand and not think a thing of it. He would have opportunities to walk away from a group project or game when it simply becomes too much to interact or be close with others. A place where everyone feels comfortable and everyone’s differences are accepted.

This subject is so important, so vast, that I feel I am beginning to ramble. As I said in my note at the beginning, I have been sitting on this post in my drafts for some time, not knowing how to really pull together what I am trying to get across. I’m still working on that. But perhaps for those who run across this blog, it will get them thinking and sharing, collaborating. A new beginning!

Perhaps then someday we will no longer have to put the word typical in quotes when referring to some of our kids. No more “NT” kids. All of us would be considered ND. Neurodiverse. The new “typical”.