Thursday, December 24, 2015

Lead the Way

May 2010
Friday morning was the much anticipated graduation ceremony at Caden's school. Although he wasn't graduating, we were still invited because the kids had been working hard on songs and dances. Was so looking forward to spending some time in Caden's classroom and we went armed with camera and video. Unfortunately Caden wasn't able to handle the extra people nor the change in routine and the way the morning unfolded simply isn't describable other than to say we've always known that we were in a war with autism to keep it from dragging our precious child into its black hole. We've had glimpses of that black hole before but nothing like we saw on Friday. In the ironic fashion that seems to describe our life, the only person who ended up being led out of the classroom by the teacher was me. Made a bawling idiot of myself…

I wrote this on a private family blog 5.5 years ago.  I thought about editing it a bit before sharing it today because it contains phrases that I wouldn’t ever dream of uttering today.  Then I decided to leave it as is because those are the words that I chose 5.5 years ago.  Our journey, my understanding, and life in general was just different than it is now.  Because I wouldn’t utter some of those words today doesn’t change the fact, though, that it is how I felt in that moment so long ago.

So why am I sharing this now?  Because there is something else I want to share…

December 2015
…Tuesday evening was the much anticipated holiday dance recital at our local dance school.  Probably doesn’t seem like a big deal as our daughter has made us into waiting-in-parking-lot parents by dancing almost as many nights as there are in a week.  But this, this night was different.  Dan came home from work early to help handle the nerves…..his? mine? Ours? Interestingly Caden didn’t have any nerves, and yet this would be his first ever dance recital; actually this is the first successful “neurotypical” “nonadaptive” “no buddy” activity that he has ever participated in.  He has been working so hard—he never hesitated his first night of dance class, and although the first few classes held some tears and rocky moments, he never asked to quit.  He hasn’t ever asked to leave; even when I offer him the option, he chooses to stay.  We’ve talked a lot about the recital and how it is okay to change his mind anytime.  He even made me promise that if he got scared on stage that I would come get him. Trust me when I say I planned to be on one side of the stage and had big sis on the other.  I mean there were a lot---a really, really lot of tickets sold for the event, and it was going to be on a stage in a venue he hadn’t ever danced at.  I was thrilled and proud of him for even thinking about going, but he was dedicated.  We went back stage, and he played with the boys in his class while he waited.  He got lined up, and marched to the stage when it was time.  And there in front of all of those people, including several of his favorite past autism therapists, he walked out on stage and he danced.  He did facials and he paid attention to the music.  And before he left the stage he took a big ol’ bow like he had been doing this is whole life.  Backstage I cried.  I doubt any of the dance teachers, parents or other dancers had a clue why I was crying so hard, but yeah I made a bawling idiot out of myself.

I can’t help but think that if his preschool teacher had been standing backstage with me Tuesday night that she would have cried too.  That little boy we watched ride circles on the playground avoiding any and all kids, that little boy who couldn’t handle any type of routine change or noisy environment, that little boy who stood up front that day without ever saying a word or acknowledging what was going on around him, danced his heart out and then told us all about it later in his very own unique Caden way.  We weren’t ever in an autism ‘war.’ We were trying to lead Caden on a journey doing things our way when in reality what we needed to do was follow.  Caden has always known where the path was—we just had to allow him the freedom to find it.  Ironic isn’t it?  I’ve always called this blog Caden’s tale, but have only just recently realized what a profound and guiding philosophy that needs to be for us.  There’s a saying in the autism community, “nothing without us” and I think I finally understand that.  Caden you weren’t the one that needed to change—we did.  Thank you for giving us the time and opportunity to realize that and become the parents that you deserve. 

Sunday, December 13, 2015

Love and a Touch of Heaven for Christmas

             “Mommy do you know what would be the best Christmas                       present ever?”
             “What’s that buddy?”
 “If on Christmas morning we went into the family room and all of our pets were home from heaven.”

Before his diagnosis, I was talking to an acquaintance who has a lot of experience with psychology.  This person assured me that Caden couldn’t possibly have autism because she had seen him smile.  I wasn’t even on the journey yet and had no idea if I wanted autism to be the explanation or not but I did know that something wasn’t quite right and that until we found “the label” we weren’t going to be able to seek out therapy or medicine or whatever it was that our sweet little boy needed to bring a bit of calm to his very chaotic world.  Honestly when he stopped talking, I didn’t know if it we were looking for something physical or mental or developmental.  I just wanted answers and the speech therapy evaluations were suggesting that autism testing was warranted.  Not knowing anything about autism, I asked her to elaborate and she very matter of factly told me that ASD kids were emotionally cold. 

Let’s just say the first evaluation didn’t leave any room that DSM code 299.00 applied.  Maybe it is my years and years of practice with coding for insurance but as much as is blurred about that diagnostic findings meeting, I walked out with those numbers as clear as day in my mind.  We waited another 6 months and re-evaluated at another facility and walked out with the same verdict.  Caden was on the spectrum and no one had any doubt about that. 

I did what any terrified parent would do, I started reading anything and everything I could get my hands on.  I talked to anyone and everyone who had ideas about autism.  I learned the language, the therapy options, and what other conditions liked to hang out with ASD. In other words I thought I became an expert. 

December is the 7th year anniversary of his initial diagnosis.  Looking back now I realize how na├»ve some of my ideas were.  For example I thought problems would resolve as we worked through therapy; I never considered that as we would overcome one thing, something else would pop up in its place.  In other words it didn’t dawn on me that autism would grow and change as my son grew and changed.  As I have talked about here and here, (oh and let's not forget here) over the years it has also been painfully obvious that while I tried to act on the research I was finding, I was wrong a lot.  Just like Caden’s talents are different (not better, not worse, just different) than his big sisters, his autism like his personality and talents is uniquely his own. 

Maybe some individuals with ASD are emotionally cold.  Or maybe they don’t know how to express the emotions they feel.  Or maybe the emotions are too overwhelming so they shut down.  Or maybe the emotions are felt so deep a fight or flight response is necessary in order to cope.  Or maybe a hundred other scenarios I’m not even thinking about.

I just remember recalling my acquaintance’s words in the hours following Caden’s diagnosis and wondering if that meant he would spend his life alone.  In my darkest hour, I even wondered if it meant that he didn’t and maybe never would love me.  Flash forward to today.  One of Caden’s favorite and most reliable coping mechanisms when life starts to get overwhelming or hard is to tell us that he loves us.  He has to repeat it until hears that we love him too.  His need for that reassurance is desperate and genuine as is his perfect Christmas morning scenario.  I’ve cried a lot today—some of those tears are remembering how much I miss the loved ones we have lost and some of those tears are at the purity, beauty, and love he displayed in that brief interaction. 

Knowing the depth of his love for so many things just might be the best Christmas present that I could ever wish for although I have to admit a few visitors from heaven would be pretty amazing too.

Monday, December 7, 2015

Blue Eyed Believer

Those big beautiful blue eyes….

I’ve written about them so many times in so many different contexts, but recently those baby blues were looking up at me as tears slowly filled them.  He asked me again, “Are you sure mommy?” 

“Yes baby, I am sure.”

“But mommy, I have believed for so long.  What about the stockings mommy, maybe he does those?”

“Baby, the important part isn’t who puts the presents under the tree, the important part is that we believe.  We need to believe in miracles like Santa…as long as we believe in our hearts he will be real.”

“Do you believe mommy?”

“Yes I do.  Mommies and daddies just help Santa out, but the magic of Christmas, well, that is something so much bigger than anything mommy or daddy can do.  And honestly pal we believe in a lot of things that we can’t see.  Some things we see with our eyes, and that’s how we know they are true.  Some things we believe with our hearts, and that’s how we know they are true.  Most of the time, the things we have to see and believe with our hearts are the most important things in the whole wide world to hang onto.” 

The conversation hurt so much more than I ever expected it to.  As a kid, I didn’t want to stop thinking that Santa left the presents, so I just took what my head knew and let my heart run with what it wanted to believe.  I think the same thing happened with my oldest child; as she is fond of saying she believes in believing.  I guess I hoped the same thing would happen for Caden, but I should have known that the literal nature of his autism wouldn’t allow that to be the case.  Friends recently told him that Santa didn’t visit their house, and so it was inevitable that I talk with him.  I don’t think either of us expected how much of his innocence I would shatter when I said, “pal I need to talk to you for a few minutes.” 

After a few minutes of silence, he asked if he could go upstairs.  I assumed he wanted to go to his room; it is a coping mechanism that he learned in therapy…ask for a few minutes alone when you need to calm down or gather your thoughts.  I sat downstairs and replayed the conversation in my mind, and wondered what would happen at bedtime.  I don’t quite know what happens at bedtime, but it is something I’ve experienced with my anxiety issues.  There is something about the sun going down; maybe the anxieties are more visible in the shadows of darkness, or maybe that’s just the point of the day when your mind and body can no longer cope.  Maybe it is because in the silence of the night you can truly hear your own thoughts or maybe the night masks the tears that fall. 

As is often the case though, I underestimated his ability, or maybe I underestimated the depths of his heart because tears didn’t fall again at bedtime.  In fact, the subject didn’t come up again.  Then yesterday, his sister asked what the Christmas tree represented, and as I consulted the all-knowing Google, I started to explain that the fir tree is used for the holidays because it never loses its leaves like other trees.  Before I could explain what that symbolized, Caden responded “just like we never stop believing.”  The tree doesn’t fall apart, and neither should the things in our hearts. 

That isn’t exactly what Google stated, but I’m pretty sure it is the best answer I will ever hear for the tree, for our beliefs, and for our hearts.  It never ceases to amaze me that for all the challenges autism presents for my son, it also provides him with this amazing filter to see the world through. The innocence of his mind and the purity of his heart allow him to see so much beauty in the world; beauty that most of us will either never see or have long since forgotten.  As the numbers continue to grow, I wonder if the hope for our future lays within those who have the ability to truly see the world in a different light, in a different shape, and at a different angle.  The challenges don’t cease and the frustrations don’t end, but just for today I’m going to allow myself to revel in the idea that our hearts, like fir trees, have the ability to stand fast throughout the seasons, and for this I must offer my whole-hearted thanks to my son for allowing me to see a sliver of the world through his beautiful blue eyes. 

Friday, May 29, 2015

The Written Tale: Presume Competence

A few years ago we sat in an IEP meeting where we were asked which letters of the alphabet we wanted Caden to know.  The specialist running the meeting just couldn’t grasp that we might think he could learn A-L-L the letters of the alphabet.  If left to her own devices, I still wonder which letters she would have picked as the important ones.  What we all did agree on though was that he needed to focus on printing because the straight lines made more sense to his logical brain than the spirals of cursive.

Fast forward a few years and onto another school.  We knew cursive writing would be introduced in 2nd grade in this particular program.  We have been dreading it and worrying about it since we learned this information last year.  We have debated several times writing cursive into his IEP but kept thinking we still had time to make that decision.

Then the day came where we opened the lessons for the day and an introduction to cursive writing was on the day’s lesson agenda.  We cautiously mentioned this to Caden and he was adamant that he wanted to try.  In fact he was convinced that he could handle cursive writing this year.  We weren’t as equally convinced because our memories were a bit more vivid in how frustrating cursive had been for him a few years ago and just exactly how long it had taken him to learn the printed letters.  We didn’t really want to argue with Caden though so behind the scenes we talked to his teacher.  The teacher assured us they didn’t really expect much out of the students in relationship to cursive in 2nd grade so if he wanted to try it, there really wouldn’t be any negative grade impact.

With a lot of parental nerves and anxiety, we jumped into cursive.  It began as something new and exciting for Caden and then over the course of the semester became the bane of his existence with him asking every-single-day if it was a writing day.  His final portfolio of the year required writing an entire paragraph in cursiveI have to say the tears and fear over this assignment were real from all of us.  We were ready to call in the IEP team if this went south and mentally walked ourselves through the mental recovery process we would employ if Caden’s confidence was shattered.

Then today this happened:

Of course it isn't perfect; I don't even know what grade he is going to earn on it.  Honestly I don't care.  The lesson learned is priceless--and it isn't one that Caden had to learn.  The real lesson was that as parents we always need to presume competence.  We would be the first to defend Caden if anyone else questioned his ability but that's exactly what we did in our attempt to "protect" him.  We tried to use a "regular" measurement for his ability when he is extraordinarily his own unique self. This is clearly an indication that it is time to start including him in these conversations and let him participate and add input when he feels comfortable doing so.

 Although we'll never be too far behind,  it is time for us to start letting Caden take the lead in this journey.  Instead of thinking in terms of what he can't do, we need to presume competence and then figure out how to outfit him with the tools to set his own goals, timelines, and ways to reach his idea of success.  This is after all his tale to write. 

Tuesday, May 26, 2015

Real Questions

Six years ago, Caden was in the emergency room after having several seizures.  We had blizzard-like conditions, and were waiting to see what sort of transport could move him from our community hospital to a much larger children’s facility.  While waiting, a lady entered the room to draw some bloodwork.  After looking at his chart, she casually asked “so how did he get autism?”  It was just a question, but at the time it caught me off guard, mostly because I was a little worried about letting someone who knew so little stick a needle in my baby boy.

In the years after, though, I realized that the spectrum of questions special needs parents hear is as large as the autism spectrum itself.  Some questions are truly information-seeking from someone either with little experience or a new diagnosis, and some are horrifically offensive.  I’ve heard that “he’s just a boy,” “he just needs punished,” that he will “grow out of it,” and that I should “just institutionalize him” so that he doesn’t ruin my other children’s lives.

I think I was almost prepared for the comments and questions when we brought Elf the super service dog home.  We’ve been asked if “he is blind,” “how we drive so well” since we are obviously blind, “what’s wrong with him,” and that it is “horrible to waste” such a highly trained dog on a child who will never amount to anything.

My intent is to educate when I think education is possible, and let the comments roll off when education doesn’t seem likely.  After all, most of the time my children are watching and listening, and I don’t want to set the example that they ever have to explain themselves in that manner. On the wrong day, though, a snarky comment will leave my mouth or a particular finger will wag at them from the confines of one of my pockets.  All in all, though, every time a comment or question occurs, I think that’s the last time I will get caught off guard.  And every single time, I’m wrong.

I’m quickly learning that being an adoptive parent also comes with a fair share of questions and comments.  Some are genuinely curious, such as “how did you manage to adopt a boy from China,” while others are just plain inconsiderate, such as the emergency room doctor who asked how much the littlest little “cost.”  Sometimes I can tell the question comes from a place of genuine interest, and I take the time to carefully find my words to answer not only the question but also model word choices.  I have, however, been known to reply with “let me look to see if the price tag is still on him” in a moment of exhaustion.  That was obviously not my best reply, but some days you struggle just to accomplish what needs to get done without having the extra time that the conversation really calls for or you just realize that nothing you say is going to leave an impact.  That’s honestly a trickier line to teach the kids, so that they are prepared when the comments or questions are directed at them.

The other day, though, while the oldest and middle littles were in the hospital receiving their IVIG infusions, I was walking the littlest little around the hallways because he was clearly having a moment.  Maybe it was a 2-year-old moment, maybe it was a post-major surgery moment, or maybe it was an adoptive moment…it is kind of impossible to tell at this point in life.  I deliberately walked to an end of a floor that I knew didn’t house in-patients so that his crying wasn’t disturbing anyone who needed the rest and solitude.  A woman, however, was walking in the same hallway, and she made the very, very casual comment that he probably wouldn’t be crying if he had his real mom.  And with that one word, the tears began.  Maybe it was because I am a very tired mommy or maybe it was because we have had a lot of major medical stuff lately. Maybe it was because I am constantly worried about attachment and bonding issues and if I am doing things right as an adoptive mommy, or just maybe she articulated one of my greatest fears. 

I love my littlest little with all my heart and I always will.  There’s no challenge that will ever change that fact, but there will always be a part of me that knows I am the 2nd best choice to be his mother.  In the perfect world, his biological mother would have been able to care for him, he could have stayed in his homeland, and he wouldn’t have experienced so much trauma in his life at such a young age.

I’m absolutely not his biological mother, but I’m not so sure about this word “real.”  It sure seems real when I am up with him in the middle of the night, when I am kissing him goodbye as he heads off for surgery, as I am watching him learn a new word or skill, and as I watch him play with the oldest and middle littles. It sure seems real when we have one of those moments where he just stares into my eyes and I don’t want to blink in fear of losing that moment because that moment gives me hope about attachment and bonding when I’m reading yet another article or book that gives me contradictory advice over what I am doing.  The tears I’ve cried with and for him are equally real, and I know in a heartbeat that I would take away his pain and suffering if I could.  But is that “real?” I guess ultimately that will be up to Sayre to decide, and I can only hope in my heart of hearts that I am “real” enough for him.

If sticks and stones can break my bones, what about words?  How do you begin to describe how deeply those questions and comments hurt a momma’s heart, especially when they include the word real. Some days, the stories are funny, some days they are heartbreaking, but they are always a part of the real journey that we call life.

Tuesday, April 28, 2015

I Spy....Self-Advocacy

The other day Caden and his daddy were playing I Spy.  Caden said I spy something blue.  After looking around for a few minutes, his daddy told him I just don't see anything blue Caden.  What is it?  With a huge grin, Caden replied it's me daddy.  Now completely confused, his daddy asked what he was talking about.  Again with a huge grin, Caden replied you know autism, remember I have autism daddy.

Yea, I know I'm back to "that topic" again but that interaction means so much more to me than an organization.  First he recognized that the Light It Up Blue event that we went to earlier this month was for people like him who are on the spectrum.  We were lucky--we went to an event on a college campus that involved upbeat music, dancing, and felt like a celebration.  He danced and sang and danced some more.  In some ways, it probably felt like a party for him.  A party about autism.  Essentially a party for him.

Second he is starting to really see autism as a part of who he is.  I think that level of personal awareness and acceptance is a pretty big deal.  A few days ago, he was playing and a few boys came up to see his razer cart.  They started asking him if he knew about the ghosts that lived behind the building and he replied I don't like to talk about that because I have autism.  They asked what autism was and he told them to ask his daddy.  Later though he asked how he could explain autism.  I am still searching for an explanation that he can use but I have a feeling that with enough conversations he will eventually come up with his own definition and it will be exactly the right one for his autism.

Since then he has begun to ask more and more questions.  Sometimes when he is having a difficult day or something is difficult for him, he asks if it is because of his autism.  Sometimes he does something really great in school or a video game and he asks if it is because of his autism.  Of course nothing is entirely because of autism but I love that he is trying to understand this part of who he is.  He acknowledges that some things like emotions are really really hard and that those challenges aren't just going to go away.  He is starting to understand what autism therapy is all about although he acknowledges he doesn't always like it nor does he always want to do it, or understand how it is suppose to help.  He is trying to grapple with some glimmer of understanding that the same elements that make certain aspects of life really hard also make other aspects of life really fun or easy.  For example, his brain is very logical--everything is black and white for me.  This makes him amazing at math and at the same  time makes language extremely challenging.  He doesn't understand how that's possible but he is trying to understand it.  I don't have a great answer because I don't always understand it all either but I do know that some how seeing both sides of the hand that he has been dealt in life will help him to be more well adjusted, confident, and happier in the long run.

I'm in no way trying to paint a pretty picture of every moment of autism.  My giggle monster is struggling with some pretty big anxieties right now because his brain won't let him forget them or be distracted from them.  Things like being able to handle competition are still well outside of his comfort zone.  We don't have the sleep issues conquered in the slightest.  We are still working on helping him find ways to gain the sensory input that he needs while staying safe.  Every day holds the potential for a new challenge or a new opportunity.

I'm not sure I can put my point into words but I felt like I owed it to Caden to try.  The moment that he identified with autism.....I don't know, it's almost as if a huge weight was lifted off of my shoulders.  I really can't explain it but that moment has opened the door to a lot of conversations.  None of those conversations are easy and honestly I don't know if we always give him the "right" answers.  But I never imagined 6 years ago when he lost all language that we would ever be at this point in life.  As he started to regain words, I didn't know if he would ever be able to reveal such deep emotional truths about himself to us.  With so much negativity and bullying that occurs, I didn't know if he would ever be able to accept this part of his identity and I surely didn't imagine that he would stop a conversation that he was uncomfortable with (the ghost story) by stating I'm not okay with this because I have autism. That's self-advocacy and I guess what I'm trying to say (in a lot of wordsis that I am beyond proud of him and that he truly is one of my heroes.

Learning to dance in the rain.......

Saturday, April 4, 2015

The Light I Celebrated

On April 1st I announced in one of my classes that it was Autism Month which promptly led a student to share that her sorority was holding an event on April 2nd at the clock tower to "light it up blue."  We moved onto other announcements and eventually the day's class topic. I didn't think anymore about the event until the student came up to me after class and asked, if Caden and I would be at the event.  I immediately defaulted to a few excuses about bedtimes and other reasons that made it impossible for me to commit and then I spent the rest of the day....thinking about the event.  

I haven't supported Autism Speaks for a few years and I don't intend to this year either.  The more I thought about it though, I realized I really wanted to support my students and the enthusiasm that they had for the event.  They are, after all, our future teachers, psychologists, speech therapists, occupational therapists, insurance agents, and so on.  I want to support them taking their awareness/acceptance/support of autism into those future careers.  So much in the same way I made my decision about Autism Month, I asked Caden if he wanted to go.  He thought the idea was interesting and he loved that there would be dancing and sugar.

So we went.  It was an amazing evening that I have wanted to blog about since I got home but I've been hesitating because I feel like I am keeping a dirty little secret that I know will upset some of my friends in the autism community.  But then I started looking at pictures and I realized something about Thursday night.  It wasn't about the color; the clock tower would have looked just as cool in red or purple or orange.  It wasn't even about the organization; the entire time I was there the organization wasn't discussed but a lot of other students saw the light, heard the music and they stopped over at the event.  They asked questions and we talked.

The light I supported that night looked like this:

[caption id="attachment_367" align="aligncenter" width="300"] UW-La Crosse Students Supporting Autism[/caption]

And it looked like this:

[caption id="attachment_365" align="aligncenter" width="300"] Elf-The Amazing Autism Service Dog[/caption]

When the crowd and the music became too overwhelming, Caden found a spot of his own to celebrate in his own way.

[caption id="attachment_368" align="aligncenter" width="221"] Caden and Mommy Dancing[/caption]

Thanks to his big sister's photography and editing skills, the night even looked like this:

[caption id="attachment_366" align="aligncenter" width="225"] The Clock Tower[/caption]

And when the evening was done, the light I supported looked like this:

[caption id="attachment_369" align="aligncenter" width="285"] Family[/caption]


I'm really glad we were there Thursday night.  Students asked thoughtful questions,  my daughter posted her picture on Facebook which opened the door to conversations with a few of her friends, and Caden has continued to talk how much fun he had at an "autism dance."  I'm considering the night a victory and I hope the lights that burned so bright Thursday night continue to shine for a long long time.


Wednesday, April 1, 2015

April and Autism—That’s Cool Month


Awareness versus Acceptance.  Autistic versus Person with Autism.  Disability versus Characteristic.  Challenge versus Gift.  ABA versus Playtime. Nature versus Nurture. Inclusion versus Exclusion. Sameness versus Difference.  Blue versus Red.

All perfectly acceptable topics for the month of April…the month designated as Autism Month.  But for the last few years the theme for the month has been disagreement, arguing, fighting, disrespect, and hurtfulness.  My first “April” was in 2007, a few months after my giggle monster had been diagnosed with Autism Spectrum Disorder.  I was almost excited for the month because I knew people would be talking about autism and I’d have the chance to find resources and engage in the conversations that only seemed to be happening in therapist offices and private phone calls at that point in life. The designation of April created a place and space for conversations to happen and they were happening all over the internet. I found facebook groups that led to some of my closest friendships today.  I “met” people through their blogs; I’ve sat on the edge of my seat following their highs and lows over the years.  I even started my own blog in hopes that something in our journey would be useful or comforting for someone else out there like so many blogs have been for me.

But then something started to happen.  I don’t even know what the initial “event” was but people started trying to claim one set of experiences as the Truth.  By default this meant anyone else’s experiences were wrong.  Struggles began over who could and/or should speak about autism and even over what those conversations should be.  Each year that struggle has become increasingly hostile.  Moderators have shut down facebook groups because they couldn’t find a way to bring the struggles back to meaningful conversations.  Blogs have gone silent because writers don’t want to constantly have to defend their experiences or maybe they worry about the future generations that will read those comments and think hey they are talking (fighting) about me. A community has truly become divided.

I guess I don’t need April.  We live the giggle monster’s flavor of autism each and every day.  I know the research and when I need answers I can do more research.  And honestly I’ve become much more confident in this journey than I was six years ago.  I still wake up some nights drenched in sweat over worry about the future but I have a lot of “moments” to cherish that can usually carry me through the rough patches.  So I wasn’t sure if I wanted to venture into the Autism “thing” this year.  To be completely transparent, I hadn’t even written my April 1st blog post because I just wasn’t sure if I wanted to go there.

Then this morning Caden was sitting at the table working on math.  I casually asked him if he knew that April was Autism Awareness month.  He pointed out that he had no idea what that even meant; I explained that it was a month that people talk about autism and can learn more about it if they want.  Without hesitation he replied cool.


I’ve thought about that all day.  And he is right.  It is cool.  April is a space and place for conversations to occur.  I owe it to Caden to throw myself into the month and see if I can offer anything useful for someone somewhere out there.  Maybe I will find myself in some negativity and I’ll have to figure out how to respond but at least that’s a choice I have.  Caden doesn’t get to choose his struggles but I’ve never heard him complain about them either.  So I’m going with I’m going to call it April and Autism—that’s cool Month because my giggle monster says so.

Disclaimer: I feel I should probably add that a few minutes after our conversation Caden did ask if Autism was a present holiday.  And honestly maybe there will be along with some cupcakes because April seems like a great place and space to celebrate my blue-eyed giggle monster for all the wonderfulness that he is.

Friday, January 9, 2015

Wrong (Again)

Caden has been having a lot of stomach pain, especially at night.  The last few weeks it has gotten to the point that he is also vomiting.  I managed to snag a doctor’s appointment, and Caden, Elf, and I headed over to our pediatrician’s office.  Because we have been dealing with this for so long, we managed to let ourselves be convinced that this was stemming for his autism and anxiety.  Caden has always had more difficulty with emotions and processing the entire day’s experiences at the very moment he tries to lay down for bed.  Given all of this, I expected a fairly quick in and out appointment.  So imagine my surprise when the doctor decided to order bloodwork and x-rays.

WOAH—this isn’t even close to good news.  Well, from a medical standpoint it ended up being great news, but from a Caden has autism standpoint this wasn’t even the slightest bit okay.  Our plan was doctor’s office, Walgreens, home.  Say it with me: doctor’s office, Walgreens, home. One more time: doctor’s office, Walgreens, home.  Nowhere in our scripting, planning, foreshadowing did it say doctor’s office, go to the lab for bloodwork, go to the hospital for x-rays, Walgreens, home.  Get the point—this is a huge deviation from the plan.  Further complicating the situation is the fact Caden likes to get his bloodwork done sitting on his daddy’s lap after his numbing cream has had a chance to work.  Neither daddy nor the cream was with us.  Poor Elf was getting nervous energy for his boy and his boy’s’ mommy.  He may have aged a bit in those few minutes it took us to get to the lab.

Then we walked in the lab and Caden decided he wanted to sit in the chair by himself.  He sat there watching his Ipad while the phlebologist drew his blood.  There were no tears, no restraints, no daddy, and no numbing cream.  He even managed to answer an unprompted casual question during the whole process. She asked him what grade he was in and he replied 2nd.  I was ready to leap for joy, but then I noticed her face. She was calculating or thinking or something and I was pretty sure whatever she said next wasn’t going to make any of us happy.  I was desperately hoping it was a bloodwork issue, but instead she said “well I know someone who is your age and they are in 3rd grade. I just don’t understand why you aren’t in 3rd grade with your birthdate and all.”  I was stunned into silence; I needed a response that didn’t involve crying, punching her, or teaching Caden new curse words.  And while I was mentally fumbling, my brave little boy spoke up and said “well my Children’s House” (kindergarten in the Montessori fashion) “teacher really needed a special helper so I stayed another year to help her.”  And with that I gave Elf a command and we headed to x-ray.

I drove home though knowing that I had messed up.  I should have had something to say.  I should have handled the situation.  I should have made sure that she understood that when a child walks into her office with a service dog that is clearly identified, no matter what you see or don’t see, you should assume that child has some difficulty or challenge in life.  She should have known that challenges or not, people don’t deserve to be compared in that way.  But it was my 8-year-old who handled the situation.  I messed up.

I’ve written about messing up as a parent before.  Remember when I talked about thinking Caden didn’t recognize emotions when in fact he recognized them deeply but didn’t know how to handle them.  And there have been many more instances that I have discussed on this blog.  But the next one that I’m going to share with you had real physical implications for my blue-eyed giggle monster.  We associated his pain with autism-based anxiety.  The phone call from the doctor’s office later that day let us know that there was a very real medical cause—a blockage—that if left untreated could have had dire consequences.  Thankfully, the medications eventually worked without surgery, and then we noticed how very wrong we had been.  We thought his autism and anxiety increased, which in turn increased his pain and vomiting.  But we had it all wrong.  Little by little the blockage broke down and many of those difficulties that he was experiencing also broke away.  The pain was in fact triggering his autism flight or fight response as well as his increased anxiety.  As the treatment became more successful we realized that we didn’t need to start the biofeedback therapy that one of the doctor’s had given us as a last option nor did we need to increase any medications.  We just needed to read the signs better; he did everything he knew to do to express and deal with the pain.

So is this a blog about parenting failures?  Yes. I think it is important for people to know that being a special needs parent doesn’t make you perfect.  All of the talk about special people being given special children makes me nervous.  If there’s anything special about us, it is because of our children and what they have taught us. The other failure here is that the idea of his pain being caused by autism and anxiety never sat well in my mommy-radar, but I let the “experts” convince me otherwise.  Now that is one of those rookie mistakes that I am embarrassed to even have to admit to at this point in the game.

Is this a blog about listening to your child no matter how they communicate? Yes.  We need to realize that everyone communicates differently—regardless if they have an official diagnosis or not.  It doesn’t matter if they can see, or hear, or talk, or what language they speak.  We need to try harder to read the clues that are right in front of our face.  For us, we should have realized that Caden’s pain never moved; every time he was asked he pointed to the same spot.  Anxiety would have moved around, but he consistently pointed to one spot—the very spot the blockage showed up on x-ray.  Plain and simple, he told us and we didn’t listen.

It’s another one of those experiences that has left me realizing that no matter how many degrees I have, no matter how old I am, no matter how much I think I know or try to teach my blue-eyed baby, he will always teach me more about life than I could ever imagine.  At one point I thought I was leading this journey, but it becomes more and more clear to me every day that this truly is Caden’s tale.

Friday, January 2, 2015

Adoption: Staring at Loss and Family

The adoption journey is one that I am still processing and probably will be for years to come.  There’s so much wrapped up in “gottcha” day that never really gets talked about.  You hear the fairy tale stories of instant love or the hero stories of “rescuing” a child but there’s also confusion, a (temporary) sense of hopelessness, and grief. Lots and lots of grief.  Let me try and explain.

When I walked off the bus in Zhengzhou, my son was right there in the arms of his loving and dedicated foster father.  He was obviously well loved and happy.  I had a moment that I was awe-struck; he was so beautiful, so perfect, and so mine.  It was the day that I had been waiting for, the day that I was going to meet and hold my son in my arms as he had already been in my heart for months.  I was in love.

[caption id="attachment_352" align="aligncenter" width="300"]Photography by Renee Booe, owner and operator of Ronee Booe Photography and Spur On Love Photograph by Renee Booe, owner and operator of Renee Booe Photography and Spur On Love[/caption]

Then came the moment that the “hand-over” occurred and he was taken out of the arms of the family he had known and placed into mine.  I knew what was happening, but all he knew was that a stranger was now holding him.  What child could or would possibly be okay with this?  I think back to when my oldest little and middle little were young and they barely let family members hold them at that tender age, let alone a total and complete stranger who looked, smelled, and sounded completely different than everything he had ever known.  And then it was time for his foster family to leave, and it was just us alone to figure each other out.  After many, many tears, this precious little boy fell asleep in my arms and we headed back to our hotel.

At the hotel we had a chance to really look at one another.  He stared at me and I stared at him.  Looking back now, I think we were both in shock.  He had lost everything, and while I had gained another son I felt totally and completely unprepared to parent him.  I understood his grief, but I was surprised by my own feelings.  I wanted to revel in the happiness and delight of a dream come true, but that didn’t seem quite right given my gain came through his loss.  I also had a 21 month child that already had likes and dislikes and I didn’t know any of these.  He had a system for expressing his needs, and I couldn’t decipher one cry from another.  I even thought about giving him back because I honestly didn’t know how I could make things right for either of us.  I was heartbroken for him, and I completely recognized that I was the cause of his pain and yet he clung to me because I was all that he had in that moment.  He totally and completely trusted me the same way my newborn daughter and son did when they were born, and yet he had absolutely no reason to.  That was a tremendous sense of responsibility that I didn’t know if I could handle.  I wondered if our family would ever be able to blend in a way that allowed us to change to meet his needs as much as he was changing to meet ours.  I didn’t want to “rescue” him because I knew he was fulfilling our dream, not the other way around.

[caption id="attachment_353" align="aligncenter" width="300"]Photograph by Renee Booe, Owner and Operator of Renee Booe Photography and Spur On Love. Photograph by Renee Booe, Owner and Operator of Renee Booe Photography and Spur On Love.[/caption]

But here’s the thing, I was afraid to say anything about my feelings to anyone.  My travel group all seemed so happy and content; I worried that there was something wrong with me.  I couldn’t share my feelings with friends or family because my dream was coming true--what did I possibly have to complain about? And I didn’t know if I had the right to complain because my feelings seemed trivial compared to what this baby was going through.

So I did the absolutely worst thing that I could have done; I shut down.  When I finally was home, I couldn’t figure out how to turn my feelings back on.  When I finally did, I cried.  I cried a lot and I cried often.  When I finally started researching all of this, I realized that I wasn’t alone in my feelings and I decided when I was strong enough I would share my story.  My story doesn’t take away from the grief and loss my baby experienced, but it is still a valid story to tell.  And much like the stories I have shared about autism and primary immune deficiencies, it is just my story.  Others will have a very different story, but I hope that by sharing mine, they will find the strength to accept and share theirs as well.  I could have prevented a lot of heartache on my part if I would have found the strength to talk about my feelings as I was experiencing them.  Truthfully, I would have been in a better place to be the mother that my baby needed.

Now that I look back on the past 5 months, I don’t regret our decision to adopt for a second.  In fact, another adoption weighs heavily on my heart.  I love this little guy with all my being and I think he does me as well.  As he gets older though I am going to make sure that he knows how sorry I am that he had to experience such loss and heartbreak in order to join our family.  I’m going to let him know that however he feels is exactly the way he should feel.  And I’m going to tell future and present adoptive parents that however they are feeling those first few days, weeks, or months is okay too.  The road to most fairy tales is paved with heartache, hardship, and trial, but you get through it together because that’s what family does.

[caption id="attachment_354" align="aligncenter" width="300"]IMG_20140916_162115085 Caden, Mommy, Sayre, and Ryley[/caption]