Our journey in the Autism Spectrum

Posts tagged ‘acceptance’

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!

Forget the Hate. Celebrate! ~ My Autism Awareness Day Post 2013

Every time I think about the subject, or see a blog post, or article, or discussion about it I immediately become EXTREMELY anxious! Like an I-can’t-breathe kind of anxious. Folks within the autism community are STILL “picking sides”. I generally make a run for the hills to avoid any possible confrontation with it.  I feel as if I could easily hyperventilate just trying to write this post.

A year ago, I wrote this.  And here we are again. It’s April. Autism Awareness Month.  Sadly, what I wrote last year still feels very true to me today.  I’m disappointed. It makes me anxious and sad and tired.

I.just.don’t.get.it.

I will support Autism Speaks, the Autism Society , Asperger Syndrome and High Functioning Autism Association (ASHA), the National Autism Association, LifeSkills/TouchPoint Autism Services, and many other autism organizations.  I want to support and promote ANY and ALL of the wide SPECTRUM of organizations and individuals that are working positively toward helping ALL others in this great big, and very diverse, spectrum of AUTISM. We need awareness at all levels of autism so we can promote compassion and understanding for ALL on the autism spectrum, no matter where on this spectrum they may be! It hurts my heart to think that some in our “community” still can’t see that.

Perhaps I should be glad that I don’t get the hate. I’ve got no room in my life or in my heart for more negativity and bitterness. April is Autism Awareness Month and I know that most of my readers are highly aware of autism every damn day, as am I. In 2012 I followed up my post linked above with this post.  And this too still rings true.  Positively so.

Because of all of this I’ve decided that I want to use this month of awareness to CELEBRATE autism. I will celebrate my son, his differences, his challenges, and the amazing progress he continues to make! I will celebrate our educators, counselors, therapists and physicians who help support and encourage us along the way! I will celebrate our whole family for rising up and overcoming the challenges that autism often brings into our lives. In doing this perhaps others, both within the autism community and those outside of it, will learn by our POSITIVE example. And really, isn’t this what we want to accomplish all year long?!?!

Welcome to April! Celebrating Autism Month!

Autism Awareness: Video Links!

As as the month of April comes to a close I wanted to share some really beautiful autism awareness videos that have been made this month by a few of my blogger and Facebook “friends”.

Parents with children on the autism spectrum know that autism awareness doesn’t just happen for one month out of the year. It’s something that we do DAILY! 24/7/365! Some days it’s easy…but many more days it’s just damn hard!

I know these videos that I share will help to carry me through those rough days and I hope it will help to remind others that these are the faces of our beautiful children on the autism spectrum and they are worth fighting for every day, all year long!

Help us spread autism awareness, understanding, and acceptance!

Please take a little time to watch these wonderful videos and also check out these moms’ blogs/ Facebook pages!

Also, Henry, my dude, makes a cameo appearance in a few of these! See if you can spot him!   😉

Video “But S/he Doesn’t Look Autistic by stark.raving.mad.mommy

Video “More than a Number”  by No Guile: Life and Stories from Autism

Videos “Autism Awareness” and “Autism Awareness -Part 2”  by We Care About We Care About Someone with Autism

Video of Graceland Lighting It Up Blue with WiLd WoRld oF AuTism and Autism Speaks

Video “Autism We Are 1 in 70”  by Lisa F. (made before the new number of 1 in 54 came out!)

Video “Autism Awareness 2012: What Are You Waiting For” by Autism Moms

 

A very big THANK YOU from the bottom of my heart for all the moms out there that made such amazing videos of our kiddos and to those who share community and support on Facebook and in blogs. You all make me feel not so alone!  ~Karen

My Official World Autism Awareness Day Post (and it ain’t pretty)

[Ed. Note: Alternately titled:  Cant’ We All Just Get Along?!?]

April 2, 2012. Today is World Autism Awareness Day.

Our house lit up blue last night and will continue throughout the month of April….and probably beyond as we did last year. All of our family is wearing blue with puzzle pieces today.  Lucy and I even have our fingers and toes painted blue. I will wear my autism awareness jewelry that I have acquired over the last year. Ultimately, today is not that much different for us than any other day.

But I wanted it to be different.

This year Henry actually understands that HE has autism. His little sister, Lucy, understands that this year as well.

I wanted it to be so much more for us this year. I have felt an urgency to DO more. But at the same time, I’ve been overwhelmed by it all and in turn unable to do much of anything. Most of all, right now I feel ANGRY and it’s not because my son has autism.

It’s upsetting for me to hear folks in the autism community arguing amongst ourselves about what causes  autism, treatments and therapies, which organizations to support or not to support. Actually, I’m pretty pissed off about it.  I’m sick of hearing the bickering, the ugly words exchanged. Who is right and who is wrong. Banning folks from Facebook pages, loudly “unliking” a page because we didn’t like something that was posted there.  It’s turning me off. And when that happens I want to shut down and walk away.

Inside me I am screaming at the autism community.

Can’t we all just get along, people!?!?! Don’t you see that we are ALL correct?!?! That there is no right and wrong? We’re in this TOGETHER and if we don’t stick together then where the hell does that leave us?

“Sticking together” doesn’t necessarily mean we all have to agree on everything.  There are a lot of folks in the autism community saying things that I don’t believe in or agree with. But, dammit, if their kid(s) have autism or if they themselves have autism (or sometimes BOTH!) then can’t we support them in their right to say what they want and to support who they want?  We don’t have to tear each other down or tell them we think they’re “wrong” and  that we’re “right”.

It shouldn’t matter that we all may feel differently about HOW we think our children developed autism or that we may have different ideas about “cures”, “treatments” and “therapy”.

Whether you believe the CDC’s recent numbers regarding autism or not, whether you support Autism Speaks or The Autism Society of American, or perhaps a local organization closer to home, does it really matter when it comes to our kids?

As Jess at Diary of a Mom says, “Autism is one word but there is no one autism.”

Nor is there one cause, one cure, one treatment, one therapy. There is no one color, one religion, one culture, one belief…

We should each be able to  promote OUR autism in any way WE want! And we must be respectful of  OTHERS that are doing it in THEIR own way! We should all be able to light up our homes in any flippin’ color we want! Or don’t light it up at all!

In the autism community we shout at the top of our lungs for others outside the community to be aware of autism, be aware of the differences in those on the autism spectrum. We want the world to accept those differences!

How about we practice what we preach, people?!? Let’s show the world BY EXAMPLE, shall we? We don’t always need to agree with everyone on every idea or issue. But we DO need to be RESPECTFUL, both in our support or in our disagreement.

Today is World Autism Awareness day. April is Autism Awareness month. I want MY autism community to RESPECTFULLY support however we EACH choose to promote and support OUR own autism. THAT is what makes us a true COMMUNITY.

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”.

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