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”.

They Accepted

This last part of the school year has been a bit challenging for our little dude. We are getting some notes coming home in his daily binder; “rough day”, “agitated”, “did not want to work with classmates in group”, “impatient”, “not waiting his turn”, etc. It’s the end of the school year and Henry is having a hard time holding it together some days. This is not surprising to me for a kid with an autism diagnosis. We work daily in the area of his social/emotional challenges. Always. Still.

Last week I had gotten a note and a call from the principal’s office that Henry was bothering some girls on the playground and he reached out and grabbed one of them by the shirt. This week a note came home, “arguing today”. Henry doesn’t like to get into trouble. And he really doesn’t like to talk about it when he does get into it. You can almost see how physically painful it is for him to admit he is wrong or to apologize for something. We have been working VERY hard on how to handle this in an acceptable manner. He wants to play with the other kids sometimes but he just doesn’t know how. Nor does he get those social cues when the kids don’t want to play with him or play his way. Another not-so-surprising aspect of his autism diagnosis. This is his most challenging area for sure! I was wondering if this most recent note had something to do with the playground issue from last week. I worry a great deal about what these social challenges might mean for Henry as he grows up. For how long will these challenges be oh-so-challenging for him? Will he ever learn how to navigate these waters appropriately? Will the kids ever understand and accept him for who he is?

When I questioned Henry about who he was arguing with I got the typical first response I usually get from him, “I don’t want to talk about it!” He had just come home from school which is a rough time of day anyway. Fine. Let him decompress.

In continuing with our vigilance in using everything as a possible teachable moment, later that night before bed when all was quieting down, I asked him again who he was arguing with. “Mrs. Q.” (This is his SSD resource teacher that he adores so I was beginning to worry what this was all about.)

“Why were you arguing with Mrs. Q?”

“I don’t know, Mom. Sometimes it seems like I just can’t help it.”

Fair enough. Not that this is acceptable, mind you, but at least he was thinking about it and talking about it calmly with me.

“Well,” I said, “don’t you think you should apologize to Mrs. Q for your behavior?”

“Yeah.”

“Okay, good. So when do you see her next?”

“I see her every day, Mom.” he told me in his “duh!” tone.

“Okay, so the next time you are with her you should apologize and try to work harder at not arguing with her. Alright?”

“Yeah, okay.”

I didn’t say anymore about it after that until he got home from school the next day. “Hey, dude, did you talk with Mrs. Q?”

“Yes, and I said I was sorry and I will try to be better.” (I don’t know if he actually did apologize to her but for now I am giving him the benefit of the doubt.) I figured this was the end of it at this point and we let it go.

However, this morning while the little ones were eating breakfast and I was getting clothes ready for the day, Henry came to me and said, “Mom, you know how I told you I apologized to Mrs. Q?”

Uh oh…”Yes, I remember.”

“Weeeellllllllll, I also apologized to the girls I was bothering the other day.” And with a big grin on his face he said, “And they accepted!”

ummmm….wow! Now, I don’t know if there was any adult intervention or whether he did this on his own but still, big. huge. wow.

“Oh, dude! That is really great! I am so proud of you! Great job!” But, again, as we continually try to practice and remind and practice more, I couldn’t help adding, “So now that you said you were sorry for that, you will try hard and not bother them anymore, right?” While he is getting better at saying he is sorry, he still has a hard time stopping some of the behaviors.

“Right. But can I play with them?”

“Of course! But you need to asked them if you can play with them first. And if they say no, then you need to leave them alone, okay?”

“Yeah. But then can I still wave to them and say hi?”

Oh my sweet little dude! “Yes! That would be very nice of you!”

I realize that Henry’s classmates will never really understand how hard all of this social interaction is for him. But today, I feel we are one more step closer to acceptance!

It’s That Time of Year…

It’s that time of year. And no, I’m not talking about Autism Awareness Month. For us, it’s time for the annual IEP. Time to schlep out “the binder” and review last year’s goals. Time for that painful rock of anxiety, that I try to keep pushed WAAAAAY down, to slowly rise from my stomach and stick in my chest and throat. Time for me to agonize over what goals  for next year in 2nd grade will be in the BEST interest of my son.

I vowed to stay positive this month of April for my son and for autism awareness. But as I reviewed Henry’s most recent progress reports my positivity faulters. Yes, he has progressed in every single one of his goals.  In fact, he even met his language therapy goal! We adore our SSD teachers, Mrs. T and Mrs. Q!  So does Henry! Lots of wonderful comments on his progress report…his IEP progress report.

His gen. ed. progress report is a whole ‘nother ballgame.  He still continues to have many “Needs Improvement” marks in every area and “Still Developing” in Written/Oral Language. (ummmm…so how did he meet his IEP language goal?)  His gen. ed. teacher is amazing!  I don’t think we could have gotten a better match!  Miss SB always has positive things to say about Henry and she always remarks on the improvements he is making every day.

And still…the anxiety is there.  The worry is there.  If another parent came to me and shared these kinds of thoughts about their child, I know I would tell them to keep moving forward, focus on the positive, work together with your team, communicate with your team.  Because as a parent, we know our kids and can advocate for them better than anyone else.  It’s all going to be OKAY!

Do as I say, not as I do.

This year I go into Henry’s IEP more experienced in the process.  Last year it took less than an hour and I came way very satisfied and as happy and hopeful as I could.  This year will probably go the same way.  I don’t know why I get so anxious.  Quite frankly, it’s exhausting.  Nonetheless, I will get through it.  Somehow.  As I do every year during this time.  I just have to pretend to be that “other parent”.  That parent that I would encourage, “It will be OKAY!”

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”.

For the (Permanent) Record

When you have a child with special needs and/or an IEP (Individual Education Plan) life is full of what seems like endless appointments, therapy sessions,  forms and paperwork, observations, assessments, tests and meetings. And new  lingo!  (This I have not mastered yet but I am sure in time I will become quite fluent!) Once the “IEP/assessment ball is rolling” so to speak, the dominos fall and this is where the  cascade of  the above mentioned forms, testing, and the like, begins. It is at this point I feel I do need to insert here that the forms and evaluations and questionnaires that are sent home can be quite daunting and sometimes just plain ridiculous! Of course, being the type of personality I am, these prove to be a particular challenge to me as I want to always give the very best, most accurate answer I can on every. single. question. I  agonize over each word, each qualifying answer. This is for my son. What if I don’t answer something as accurately as I should and it puts him in the wrong category? What if my answers give the wrong impression that he is higher functioning than he really is and therefore, will not qualify for the help he truly needs? Or what if I answer too severely putting him in a slower category and then he will not be challenged to live up to his full potential? You see where I am going with this?!? It is a nerve-wracking process for me! (And in turn, for my husband as we try to fill these out together, each of us with our own opinions and experiences with our son~it can be frustrating to say the least!)

Because Henry had made so much progress last spring and over the summer, when school started again in August I asked his teacher if we could reassess his IEP. I also asked that his speech/language be re-evaluated because he had not qualified for help in this area previously but with age and time he still has not improved much in his communications skills.  So, back in October we had a meeting to review and discuss Henry’s current IEP and possible evaluation and reassessment to see if he would now qualify for  speech/language therapy and assessment of his relative intelligence (yep, that would be an IQ test).  I do not put too much stock in IQ tests but in trying to get Henry ready for mainstream kindergarten in the fall of this year, I felt this was a good time to have him tested.  I feel it is important for us to have an idea of where his cognitive abilities might lie. Next came the home/parent evaluation forms, more paperwork for us to document Henry’s history and more paperwork and forms for his angel-of-a-special ed. teacher. For Henry, more testing. A few portions of these tests are fun and like games to him. Others are just plain work. I do believe he is catching on and I am wondering what suspicions may go through that mind of his every time he gets pulled out of class.

So, that brings us to last week. (The intended crux of this post.)  We had a meeting to discuss the results from all of the above! Lots of stats thrown on the table, graphs, a  bell curve, discussions of behaviors seen and not seen, more lingo. No surprises. It seems we are all on the same page. What we are seeing at home, they are seeing similar at school. Similar enough anyway. To quote Temple Grandin, “Generally people on the autism spectrum tend be really, really good in one area and really bad in others”. Yep! That’s my little dude!  He is a visual thinker. He does see in pictures. Great builder! A hands-on kid. Not so great in the communication/language or social/emotional areas. Overall, we got some really great news regarding Henry’s potential and what we thought we knew about our son was validated.

So what the heck does all this mean?!? This is what I was thinking after the dizzying array of information that was put before us. Ultimately, Henry qualifies for more help in the area of language and pragmatics! Wonderful! Also, now that he is 5 years of age and heading to kindergarten in the fall, he is ready for his “school age” diagnosis. He does in fact, have Autism. Yes, we know this. We have had the medical diagnosis of PPD-NOS for over a year, along with ADHD.  It is because of those diagnoses we have been able to access special services for our son to help him grow and learn. But now, with this official school age diagnosis he will certainly have the continued support through his IEP’s for whatever help he may need throughout his school years! YES! Great news! I am smiling! I am relieved and happy!

And then I hear the Violent Femme’s Gordon Gano. His voice is saying in my head, “I hope you know this will go down on your permanent record.” Time stops. I am frozen with fear. Good God what have I done?!? Autism. My son has autism. By trying to make sure he gets all of the help and support he needs to succeed, I have succeeded in labeling him. I feel bile rising in my throat. I try to maintain my composure and I keep smiling. Somehow we finish up the meeting. There is chatter about what a good thing this is and how next we will set up an IEP date to include the speech/language pathology and revise Henry’s IEP for the rest of the school year and how we will have to have another IEP meeting just before summertime to discuss and make plans for transition to kindergarten. Great. No worries, I say. Sounds like a good plan. The pleasantries continue until we all go our separate ways.

For the rest of that day and well into this week I have felt as if I am moving in a haze. I can’ t seem to concentrate on anything. Thoughts and emotions tumble around in my head and in my heart. I know in my head that this school-aged diagnosis good thing to get him the support we know he will need and there certainly is no mistaking Henry’s challenges and differences in particular areas. As a family we have not been ones to shy away from talking about Henry’s diagnoses. We are not embarrassed or have any shame whatsoever. We embrace Henry for who he is, differences and challenges and all! But for a few seconds, my heart broke and I panicked. My son has autism. In those few seconds I wished it wasn’t true and I felt guilty about that! I realized in that moment that deep down in an almost buried corner of my heart, there was denial hiding there. Perhaps because Henry’s challenges and differences, though noticeable after spending some time with him, aren’t really all that prominent overall. We can “forget” the autism aspects of Henry. How could I wish my son to be anything other that what he IS? Henry is so very bright and funny and loving. He’s got a dimpled grin  and a twinkle in his eyes that will capture your heart! The kid is SMART! He is his own little dude and he has the potential to take the world by storm, doing whatever it may be that he wants to do! I have no doubts about this. Although there are certain aspects of the autism spectrum that make him the kind of person he is, it by no means defines him! But now it is on his permanent school record. Autism. Will future teachers see beyond that? Or will they just see Henry, the autistic kid? Will they take the time to get to know that Henry is so much more than that? Fear and panic overwhelm me. A long road lay ahead of us. How will we ever be able to make it through?

Then, through my tears, I envision my little dude for all that he is; his quirkiness and intelligence, his quick wit and amazing sense of humor, his vision and skill for building and “inventing” things.  He has an imagination like no other! He will use these strengths. He will be leading the way.  Love and pride and hope chase my anxiety away. Henry may have autism but autism does not have Henry. We will accept this label if it means helping Henry to be the best Henry he can possibly be.

I realize we are starting a new leg of our journey in the autism spectrum. True advocating for Henry must really begin. It is time we start to teach Henry to advocate for himself. He  has a long way to go and a lot to learn. We have a lot of work to do together, Henry and our family. Grant and I need to learn to also be educators for others, the teachers, administrators and even Henry’s peers and their parents. But the best teacher of all will be Henry, himself. He will teach the world that he is so much more than autism, no matter what might be written down on his permanent record.