Our journey in the Autism Spectrum

Posts tagged ‘understanding’

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!

A Glimpse at Life on the Other Side the Wall

Last night I had the opportunity to attend the Autism Awareness and Understanding presentation by Aaron Likens with TouchPoint Autism Services.   What an amazing program!  Aaron and TouchPoint have meant so much to our family. I thought I might share a bit of our story as to how they have made such a difference in our lives.

Before we had a diagnosis, I had always known there was something different about my son, Henry. Something different but perhaps something special too.  I just couldn’t quite put my finger on what it was.  He was funny and smiled a lot. He could be a loving little dude, and certainly he still is. There has always been a certain “mischievous charm” about him; a special sparkle in his eyes.   But he could be stubborn and very fussy as a toddler. He never required much sleep at all! He had very few words by 3 years old. Meltdowns became much more frequent. Daily. Well, many days it was several times a day if I’m honest about it.  He was no longer easy to engage and I felt myself really having to work at connecting with him.  A wall had been put up. We began to become isolated because of our lack of sleep and Henry’s behaviors.

At about 3 1/2 years old, despite an explosion of language skills (relatively speaking), something still wasn’t right. I was at my wit’s end. Our family could not continue to live in the chaos that our home had become. When Henry was 4 years old, our pediatrician gave us the official diagnosis of PDD-NOS and ADHD. (I now feel that the ADHD is just a symptom of the Autism Spectrum for us but at this point it really doesn’t matter). The diagnosis wasn’t a surprise by that time. Pervasive Developmental Delay (or Autism Spectrum Disorder) made sense. It was a relief to have a name for our son’s differences. That relief was promptly followed by a hard kick in the gut by reality. Now what?!?

During that first year after the diagnoses there were so many therapy appointments, doctors’ visits, more evaluations and IEP’s. I was going to just about every seminar, conference, or workshop on autism spectrum disorders and childhood behaviors that I could, trying to glean some information that might actually help us at home. Despite all of my knowledge-gathering, I still felt isolated. We knew no one else who had a child on the autism spectrum. I was exhausted and overwhelmed. I just never seemed to have the time or energy to make that one more phone call to TouchPoint. That first year, every time I would speak to our pediatrician he would ask, “Have you called TouchPoint yet?”

As we approached the one year mark, I knew I could not bear to tell our pediatrician that, “No, I still haven’t called TouchPoint.” So finally, I made the call. In that very first phone call to them I realized that TouchPoint should have been my first call. (I’ve also become a better listener to our pediatrician!) I was amazed to learn about all of the programs and supports they had in place, not only for those with autism but for the family as well!

It was about this time that I decided to start a blog. Perhaps I could work on my writing and it might give me a diversion from constantly researching articles on autism therapies and treatments.  I thought the blog would really be just for me. A place where I could process things; put my feelings “out there”, and maybe even improve my writing skills.  I still felt so alone in all of this. With this new “hobby” I found a few autism blogs that I really enjoyed reading; one of them being Aaron’s Life on the Other Side of the Wall. I was thinking, “Wow, here’s a guy with Asperger’s blogging, being a productive citizen, sharing his experience of the autism spectrum, living life! He wrote a book! And he’s here in St. Louis? With TouchPoint? Wow!” ~my first glimmer of hope for my son to have a future, real potential for him to live a fulfilling and productive a life!

In 2010 I was  excited to learn that Aaron would be speaking at the  US Autism & Asperger Association (USAAA) National Conference here in St. Louis that year! I stopped by the TouchPoint booth at the conference and I was amazed at how welcoming they were. Aaron actually spent quite a bit of time talking with me about TouchPoint, his book Finding Kansas, and a bit about what it was like for him living with Asperger’s syndrome. Later, I was further impressed as I listened to Aaron participate in a panel of autism experts. He was seated right next to Dr. Temple Grandin for crying out loud! And Dr. Stephen Shore was at the other end of the table! They were all sharing their personal experiences of what it was like living with autism. Amazing!

It was in these moments that I realized my son is actually very high functioning and since then we have always described his autism as more at the “Aspergery-end” of the spectrum. I was gaining more hope.

My husband and I decided to make a commitment to further help our son and our whole family by attending TouchPoint’s ADAPT program.  This program is an on-site, 2-week intensive parent training session that we attended with our son. A true life-changer! When we got settled in for the program, I was surprised how immediately I felt at home here. I felt as if we had a place. We belonged here!

It was the ADAPT program that truly opened my eyes that I could see and experience just how smart Henry really is! This was the first (and only) program that not only allowed us to get a look into Henry’s thought processes but it gave us the knowledge and practical skills for us to use at home! We were connecting in so many positive ways! It was a bonus that Aaron came to speak to us as part of the program. The insights that he so generously shares into what it is like for him living with Asperger’s syndrome are incredible! Aaron truly conveys hope for those living with autism and their families. His passion for spreading Autism Awareness is inspiring!

We are now currently over two full years out from our diagnosis date and a year and a half from the completion of the ADAPT program.  Our son, Henry, has come so very far! He is in mainstream Kindergarten and doing so well beyond what I could have imagined! He’s still a quirky kid and most likely always will be. But he knows of his autism and is learning about it and he is learning to advocate for himself already. I also now have the privilege and honor of coming back to talk to the new families going through the ADAPT program, giving them a parent’s perspective. I love being able to come back “home”!

I am so very proud of my son! We have a long road ahead of us but I know we are on the right path.

I also know that because of Aaron and now with his Autism Awareness and Understanding Tour, he is paving the road ahead of us, helping to make our way so much smoother, inspiring us and giving us hope! Aaron gives us many gifts through his writing and presentations to peer over that “wall of autism” to SEE and connect! From the bottom my heart, I thank you, Aaron and TouchPoint Autism Services!

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

This Is Our Disclosure

[Alternately titled: “Oh, by the way, you have autism.”]

Being that I’m supposed to be talking to Henry’s class about autism, I thought probably we should address his diagnosis with him directly before heading into the classroom. Although I have been preparing myself for this day for a while now (almost since we first got the diagnosis), I wasn’t really prepared to try to explain this to him at 6 years old.  I read articles, did internet searches. I studied Dr. Stephen Shore’s video about his steps to disclosing an autism diagnosis to someone.

We have always talked openly about autism and Henry is very familiar with the words. But I’ve never been sure how much he was taking in or if he could really be applying these words to himself.

A few weeks ago, Grant and I were in the kitchen and the little ones were watching an episode of Arthur in the other room. Coincidentally, it was the episode where one of the characters meets a new friend with Asperger’s. At one point near the very end, they had real kids with Asperger’s saying their names.  Immediately after we overheard Henry whisper, “and Henry” adding his name to the list.

Grant and I just looked at each other wide-eyed. Now I really felt we owed it to Henry to talk about autism directly with him!

The next big step was to find the right moment. One where he would be most receptive and open to conversation. I wanted to handle this EXACTLY right. (If you haven’t already, check out Dr. Shore’s link above. I was aiming for “text-book perfect” disclosure here!)

One evening at bedtime Henry and I were in his room before Lucy got there. Now is the time. Here was my window.

“Hey, dude, I’d like to talk to you for a minute.”

“Okay, but then can I play my 3DS?”

“Sure but let’s talk a minute.  You know I’m coming to talk to your class, right?”

“Yes.”

“Do you know I’m coming to talk about autism?”

“No.”

“Well, I am. Do you understand about autism?”

“Yes.”

“Do you understand that YOU have autism?”

“Yes. Can I play my video game now?”

“Well, in a minute. I thought we could talk about your autism right now.”

“No, I want to play my DS.”

Discussion over. *sigh*

Of course, I still wasn’t sure how much he understood so I vowed to bring the topic back up another time. My next window came one day not long after when Henry was home sick from school. In the afternoon he and I were alone just hanging out together. At that point he was pretty much over whatever  bug it was that he had and he was in a good mood.

“So, Henry, remember that I’m coming to talk to your class about autism soon.”

“I know.”

“Well, I was hoping you could be my helper.”

“I don’t know.” He’s starting to sound annoyed.

“I’d like to talk about autism a little bit with you. You know, how people with autism can see the world very differently than others. How our brains are wired differently. So we can help teach your friends at school about it.”

“I don’t want to help.”

“Okay. You don’t have too. But do you understand that YOU have autism, Henry?”

“Arrrgh. Yes! I know! I don’t want to talk about it. I want to watch a show. Can I watch a show now?” he asks  matter-of-factly.

Again, discussion over.

I’m not sure why I though there would be more to it at this point. Knowing Henry’s personality, he is a dude of very few words unless, of course, it’s something HE chooses to talk about…ad nauseum.  Otherwise, once he has  his brain wrapped around something, he’s done talking about it and too bad for you if you feel the need to discuss it further. He’s obviously gotten it and that is that.

So we’ll continue on as we have been, with autism just naturally being a part of all of our lives. And I’m okay with that because what is most important is that Henry is okay with it. At least he seems okay with it right now. This actually gives me much comfort and relief. I know there will be more in-depth talk in the future as Henry grows and has more questions about it (or maybe not) but right now I am so pleased that autism is “normal” for our family. We accept it and embrace it. No need to talk about it because it just IS.  Henry IS himself, first and foremost….oh, and by the way, he also happens to have autism.

A Sibling’s Need to Connect

From the moment we told Molly she was going to have a baby brother or sister she was so excited and was wanting to bond with her new sibling even before he was born, singing and reading to my belly.  She even took the news that she was, in fact, going to have a baby brother quite well.  When Henry was born she was 7 1/2 years old. She was a wonderful big sister!

She still is a wonderful big sister…but it’s gotten harder. This journey in the Autism Spectrum is not something she signed up for~none of us did! From about the time Henry was 18 months old, Molly and Henry’s bond changed…for Molly, quite often that special bond was just gone. Disappeared. She didn’t understand. As a family we seemed to be in constant crisis mode (along with having added baby sister, Lucy, to the mix right at that time). We were all beyond stressed-out and sleep deprived.  For those 2 years before the diagnoses we were five individuals desperately searching for some connection with and understanding from each other.  We were seeking calm and peace and trying to find where we all fit in to this new family of five!  All this during Molly’s tween years! Can you imagine!?!

Getting Henry’s diagnoses of PDD-NOS and ADHD I think helped Molly understand a little by giving a name and an explanation for Henry’s behaviors. But it didn’t make things easier. That didn’t make her feelings of loss of that connection with her brother go away. Now at 13 years old, she has become quite an advocate for autism awareness; a true autism warrior in her own right. But still I cannot imagine how difficult it must be for her at times.

She understands what autism is and can give a very insightful explanation about this Spectrum better than just about anyone I know. But I see the pain in her eyes when Henry “rejects” her. Screaming at her when all she does is enter the room, calling her names when she just wants to interact with him, hitting her, throwing things or spitting at her…it hurts me too. Learning that Henry does indeed LOVE her and miss her when she is not here, learning to love and connect with him on his terms…that can be extremely difficult for an adult let alone a kid!!! But still she keeps trying and I am ever so thankful for this…her determined spirit to connect with her brother says so much about her character!

This past year has been a particularly difficult time for Molly~ most I believe is just “normal” teenage stuff. But add to that a sibling that she  loves and wants to desperately feel she has a relationship with that happens to be on the autism spectrum…well, let’s just say the situation has been painful and many times, explosive. Thankfully, it seems a place she has found  some solace and MUCH understanding is with her sibling support group. It has given her a place where she has a sense of real belonging; a place that is just for her where she knows she is understood. (And I think it has also given her an appreciation for just how “high-functioning” her own brother is! It has helped put things into perspective.)

Several months back Molly made a journal for each of her siblings. They periodically work on these books together, just one-on-one, coloring pictures, writing down games and activities that they do together. From time to time through this book she again finds some connection with Henry.   A few weeks ago I posted a picture here of Henry and Molly holding marbles. It was a day that was a true oasis in a week of fighting, hurt feelings, slamming doors, and hateful words thrown about between the kids. School was out, camps were over for the summer and quarters were feeling quite close. And we were getting ready to go on a family trip in a couple of days! (Talk about forced bonding! I was dreading this trip with what had been going on between the kids all summer!)

Anyway, on this day Molly tried once more to feel a connection with Henry. He had gone into her room and found her marble collection. (He LOVES marbles, small round beads and rocks). Whether or not Molly had invited him in or he made himself at home there I do not know. (At the time, Lucy and I were having time together in our downstairs family room.)  Whatever the circumstance, Molly saw his interest as an opportunity…she pulled out Henry’s journal and they began to play and count and name all the marbles. (A very creative moment to boot!) At first I didn’t notice how quiet things were upstairs. Then occasionally I would here some quiet giggles and talking. This went on for most of the morning!!! I was afraid to go see for myself for fear of “breaking the spell”. Finally after several hours I couldn’t take it anymore and had to go see for myself. When they showed me what they were doing and Henry excitedly listed all the names of every marble and I saw such joy and happiness in BOTH their eyes…my heart swelled!

At this moment I was silently pleading with Molly to understand that this was a moment to hold on too! Grab it and hold it tight!!! Later I tried to say as much to her, but again, understanding and really remembering this is hard for most I think! But it gave me hope and I think it gave Molly hope as well!

We left a few days later on our trip and I do think Molly did take to heart this “teaching moment” about the need to connect with Henry on his terms. We had one of our best family trips ever! Again, Molly was an outstanding big sister and spent A LOT of time interacting her siblings, especially our time spent at Lake Michigan.   The dynamics of all our relationships with each other will continue to change (and hopefully grow even closer) frequently as our family continues this journey in the spectrum.  I hope Molly will always  try to maintain a closeness, a true connection, with her brother~ I know his love for her is always there, even if she doesn’t always see it. I am praying her heart will remember these times and that she knows just how special she is and how proud I am of her!

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