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”.

Processing the Twilight Zone (or Kindergarten IEP- Part II)

[Editor’s Note: An alternative, more appropriate title for this post really should be: An Annoying Mother Who Worries Too Much! ~Trust me, I know. I annoy myself!]

School is now officially out for the summer. It’s probably time I just push through this post and get it out there…before summer is over and we enter into a whole other mess of worries and anxieties and issues! This particular blog post has been sitting in my drafts for days and days now. I just haven’t been able to bring myself to fully think through and process the whole thing. I can’t seem to grasp (or don’t want to grasp) the thoughts swirling and spiraling in my head. I am not completely sure why but  my guess is because just thinking about it raises my anxiety. If I think about it too much doubt, worries, fears about whether or not we made the right decisions creep in.  Worrying and second-guessing come naturally to me so I like to avoid and “stuff” all things which I don’t want to deal with…like then maybe it won’t happen. Denial…I could not possibly be sending my son to all-day, mainstream Kindergarten in August where he will ride the bus, eat lunch and be in a class of TWENTY other children with ONE teacher! All. by. himself!

So if you remember, a few weeks back we had Henry’s big Kindergarten Transition IEP. In case you missed it you can read the prequel here. Since that time I have been slowly trying process what transpired. 14 or so individuals (not counting Grant and myself) sitting around two big library tables pulled together was a little intimidating. And when it came to discussions about data and percentages of pull-out versus push-in and weekly minutes in the triple digits….well, my brain shut that part out for fear of vertigo and vomiting. (Some day I hope to write more about my newly self-diagnosed dyscalculia~it has a name!) Anyway, if you asked me now, I would not be able to tell you exactly what even came out of that IEP…that’s how badly I block data and numbers. (Scarier still is that I do the banking and bill paying for our family!)

Anyway, what I do know is that he is roughly getting only about 20% special education help; mostly in language and social/emotional areas. This is good. Right? I think?  Occupational therapy is basically being reduced to only a consultative basis, which is reasonable at this point.

Overall I came away from that (2-hour!) meeting feeling pretty good. Still nervous and anxious about Henry starting mainstream Kindergarten but it wasn’t so horrible. I still  had an appetite afterwards. Not feeling nauseous after an IEP is a good sign for me so the fact that my husband and I enjoyed a very nice lunch afterward was a positive.

What my brain keeps circling back too, and I have said as much to his beloved SSD teacher, is that my little dude looks pretty darn good on paper. Everything we talked about and decided on in the IEP makes sense and seemed reasonable at the time.

But now…the more think about it, what my son is on paper is not what he always is in the classroom and out in real life. And what triggers his autistic traits to come out are generally what are found in the mainstream school setting; the hum of voices in a confined area, many things going on at one time in this setting, many people/classmates moving around him…that buzz or hum causes him to shut down, act out, become noncompliant, meltdown. We have yet to see any real success in this area without one-on-one help. Now I am wondering if I stressed this very real trigger enough to our new team. There was no talk of a para for him. I do remember questioning this at one point where I was “assured” that they would have resources to pull in someone for him if needed.

I have enrolled Henry in a mainstream summer camp starting next week where he will go two half-days a week with his younger sister, in hopes of introducing him to a more mainstream setting. He will also still get two half-days of SSD summer school.

I know I have to let go. I have to raise the bar for my little dude, nudge him. But his anxieties and meltdowns are so painful to watch. I feel them along with him. He generally doesn’t even want to talk about Kindergarten! I anticipate a shaky start, some bumps in the road but I have to believe we will get through it and he will succeed; surpassing my expectations as he is known to do.

For now, I am going to try to take one small step at a time. Henry and I will take these steps together…anxiety and all! We will see how the mainstream camp goes. We will talk about Kindergarten; like it or not. I don’t let him see my anxiety. I don’t let most people see it. Ever. But it is there still just the same as it is in my little dude.

Now I await the letter that will come in the next few weeks telling us who his new Kindergarten teacher will be. And then I will probably worry some more! I haven’t even begun to address my little dude’s social/emotional issues! In between all this worrying I hope to actually enjoy some of this summer…Get ready for us Mrs. Kindergarten Teacher!

IEP’s and Rod Serling

.  

Kindergarten Transition IEP. These three words  have been ominously rattling, clanking, whispering and shouting in my brain for weeks like some surreal dream sequence from an old Twilight Zone episode. Curse you Rod Serling!

So much information, data and lingo is tossed around. So many people at this one….the outgoing team who we LOVE and our soon-to-be new team who we have never met! Teachers, coordinators, therapists, administrators! That in itself is enough to stir up nightmares!  An IEP meeting is truly a strange world in a Twilight Zone of its own.

The date has been looming and the waiting has been full of anxiety! I like a plan. I am not crazy about change and I don’t like surprises. (unless it’s a box with something expensive and sparkly inside or a winning lottery ticket!)  I just want this to be done and over. Yet…

Now that finally the day is almost here, 44 hours and 30 minutes to be exact as I type this line. I’m getting even more panicky. I am anxious about things going smoothly, of getting the services and support my son needs for the big jump into mainstream kindergarten. I want to start off at this new school with this new team on the right foot. That can make all of the difference!

Am I prepared? I should be but I certainly don’t feel like it. I am finding it so hard to prepare for the unknown! Thoughts and worries are swirling vortexes in my head. I have no idea how this new team executes an IEP meeting. I really don’t have any idea what to expect! What am I forgetting? Have I left something important out of my notes? Am I missing key issues that need to be addressed? Where are my notes? I still have to finish the collage of my son I am putting together for the new team. I feel such pressure to find just the right photos so they can really SEE my little dude. So they can see how smart and funny and GOOD he is. It is so important that they can see his potential so as to help him to realize it.

I have less than 2 days to get focused, get over my anxiety and get on with it. It will be what it will be. For now, my eye is on the short-term prize of just making it through the meeting and then off lunch at a nice restaurant for my favorite lobster ravioli and a glass of wine (or two!) with my husband! By this point I have to think that all will have gone well and we will have navigated through the Twilight Zone. And we are not inviting Mr. Serling to lunch with us!

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”.