Tuesday, December 22, 2015

Where am I now...A year in review of sorts...

I am sitting in my sons' room while I wait for them to fall asleep and my mind is wandering through the events of the last two years.  The struggles, the heartache, the sleepless nights...the days when it seemed like the darkened spaces we were living in might stay darkened.  All the while the smile on my face that the world has seen was my silent stand.  It was and is the symbol of the constant firm belief and hope that things must get better...the smile that hid the tears and refused to accept defeat was my way of telling the events that were so overwhelmingly smothering some days they would not win.  That smile I wore like a shield against what seemed at times like insurmountable odds.

So I sit here, and revel at what 2016 will mean for us; for my sons and for me.  Life is fluid change.  Those changes include ebbs and flows; it is evolutionary and I understand me just a little bit more and about who I am and what kind of mother I want to be...no, not just that...what kind of mother I need to be.  

My world is autism.  I live it.  I breathe it.  I advocate for it.  I have learned to accept it fully and wear it literally on shirts for the world to see.  I am an autism mom.  With that comes a tremendous responsibility that is built solely on the love I have for my children.  They are the most important parts of me...they are the reason that I do everything.  It is why I sit in a darkened room typing out this message.  This message of another triumph in a list of many that seemed to come with just that much more work.  It is sweet.  It is amazing, and I still smile.  

So I sit in this room with these beautiful boys waiting for them to fall asleep...I sit in this room that is in our new home.  For two years I waited for this opportunity and was slowly beginning to think it would never quite come, but that smile.  That smile on my face, though weary some days, remained defiant and I refused to let it dull in spite of it all and for a moment; in this moment the smile won.  We won.

AND so now here I sit at the end of this December...this fabulously chaotic upside down and right side up December waiting for January to come and realizing my smile is still here and the future is so bright.  Watch out world!!!  Watch for big things in the world of autism advocacy, my little family, and for the best year yet to come!  Happy Holidays, Merry Christmas AND a very Happy New Year from us.  

(Interviews coming again soon now that we are moved and settled.  Single parenting is hard; autism single parenting is a little harder.)
 

Monday, July 20, 2015

Second year autism 5K raises money for first responders



Seattle, WA- The second year for Superheroes 5K for Heroes raises money to help educate first responders in the area.  Runners hit the Green Lake area of Seattle to help support an Autism of Society of Washington event on Saturday, July 18, 2015 at 9am.   The 2nd annual Super Heroes for Autism 5K event was hosted by Road Runner Sports located at 7020 Woodlawn Avenue NE and offered 10% of their sales that day to go to the good cause along with the entry fees of the runners.  Peter Denton along with store manager Sophie Hayde both representing Road Runner Sports expressed that their employer likes to support local community organizations, especially ones that promote activities involving health and fitness.  Although his job entails him to help organize and set up these functions for the area he works in, Peter age 30 spoke of his personal connection this event through his particular fondness for a cousin who is autistic.  It is important to acknowledge the rising diagnoses each year touchs more and more people all of the time. 



The Superheroes for Heroes 5K wasn’t just about raising awareness, but helping to raise much needed funding for specialized training to first responders when dealing with people who are on the autism spectrum.  As the numbers continue to increase for autism diagnoses so do the number of missing person’s cases specifically entailing a ‘wanderer’ or ‘runner’ (terms used to denote the person’s tendency to wander away and become overwhelmed and then lost).  Stories seem dot social media and the news agencies about autistic individuals wandering away from their homes and extensive searches ensue to find them.  With this prevalence, our law enforcement, emergency care providers, and medical professionals are beginning to understand the necessity for specialized training to help them meet the needs of the people that they serve.  Teresa McCann, President of the Autism Society of Washington and professional Behavioral Analyst with over a decade working with children on the spectrum, expressed just how important it was for responders to understand the most common places to look when searching and what is most important to know when trying to communicate with individuals that may not be verbal.  On the list of things, bodies of water and places that children can crawl into to help them calm down from potential sensory anxiety to name a few.

Runners came in all shapes and sizes

At about 8:30am runners and event coordinators walked over to the field where the race would begin and the sidewalks were filled with brightly colored outfits and capes as its participants made their way just the few short blocks away to Green Lake.  From people who were there just for fun to a few serious runners the field of competitors was broad and came in all ages; some were personally connected to autism and some were just there for the fun theme and a good time doing something for the community.  The race started promptly at 9am and soon the trail around Green Lake was flocked with bright capes and costumes amidst the normal sunny Saturday fare of walkers, runners, and bike riders who frequent the beautiful and popular park.  The sun was high and although it was only 9am it was already really warm outside.  Amidst the various employees of Road Runner Sports were a slew of volunteers working together to make the day a successful one.


The Hersts:  Michael, Colleen, Sam (10), Jack (7), and Elliot (9mos)






This is the Herst family.  Young Jack, age 7 (and on the spectrum), was the first boy and 2nd place child runner to finish Saturday.  The family is a recent transplant from Texas and are devoted to raising autism awareness and social education with first responders.











Winner Tyler Towner rounding the corner on the last leg of the race
Maggie Anderson 1st woman to cross the finish line

It was a just little after eighteen minutes that Tyler Towner, 26 years old, ran his way across the finish line to win the race.   Just a short time later his twin brother Evan followed suit coming in second place.  Maggie Anderson was the first place woman, followed by Brittaney Towner who came in as the 2nd place woman.  First place child and girl, Isabel Rapp-Kopp age 9 and Jack Herst age 7 was the first place boy.   All runners were back to the finish line at about 10:30am.  If it seems there are a number of names that seemed to be the same, there were as both first and seond place men were twin brothers and the second place woman is wife to Tyler.  Other matching names could be seen throughout as whole families came decked out in their capes and

First Place kids:  Isabel Rapp-Kopp (age 9) and Jack Herst (age 7)
Once everyone made it back to the finish line, it was time to make their journey back to Road Runner Sports to participate in the closing ceremonies and award prizes and talk about the race.  Overall, for just the second year this event did fairly well; most annual events usually do not show any consistent turnout for at least the first three as it is a learning process.  The superheroes theme and colorful fun costumes are sure to be a hit in the coming years as well as a great symbol for a cause that is worth the attention.








Tyler Towner, Megan Spivey, Brittaney Towner, and Evan Towner



Tyler Towner  found out about this event through his wife, Brittaney.  She works for an organization called:  Seattle Community Care.  It offers specialized services for people and children on the spectrum in schools and some privatized care specifically to help with issues that are treatable with proper intervention.  They came together in a group of four with both brothers (twins) taking first and second places.

Saturday, July 11, 2015

Putting Faces on Autism: Wendee & Lauren


As I pulled into the driveway of the quaint brick building I could immediately sense that this was not just a house, but a home.  Sprinklers were running on the very hot, dry day as I walked to the front door; I was invited in and went into the living room to see that Lauren was playing with one of her cousins, who was very comfortable and helpful with her.   Wendee greeted me with a smile that held a small underlying apprehension, and we walked out into the back by the swimming pool where her mother, sister-in-law, brother, and niece (she was already in the pool) were.  Lauren followed us out and jumped right into the water.  We were surrounded by laughter and by love; it was a really nice communal feeling.  The yard was ample and full of things that said “grandchildren play here.”  I saw a lot of supportive mechanisms in place for a nurturing environment and I understood just how important it was for Lauren to be in this place at this time.  Autistic children need lots of supportive environments that include external family involvement which are not always readily available.  Wendee and Lauren had that support here and I could definitely feel it not only in that playful space, but in the social environment she was in.  This has been one of my favorite interviews thus far and I commend Wendee for her bravery in sharing; I admire her greatly.  This piece specifically will be used to educate as well as talk about this little family; Lauren’s father was unable to participate as he had to work that day, but it is my hope to follow up in the next six months and see how they are all faring.


It was a really hot day and the pool offered some respite and fun for the children.


Wendee and I made our way to a picnic table within view of the swimming pool (later moving to some swings once the children were done swimming) and began our conversation with the questions that I start many of these interviews with:  “When did your first start to realize that there was something different about Lauren?  When did you suspect that she was not developing as other children do?”    And as with many it seems, the pattern appears to be at about two years of age, however; in this case it was hard to convince herself, as well as others right away that there really was something else going on with Lauren.  It is important to acknowledge that this little girl is someone quite exceptional; her differences are masked by a brilliant little mind and a vocabulary that started to accumulate during her infancy.  She was talking far sooner than most children and in fact she was still a baby not even at a year.   Lauren’s vocabulary is immense and she often uses words that most adults do not use with any sort of regularity (or accuracy) and she is using them all contextually correct and often.  I was impressed by her bright little personality as I listened to her play with her cousins and inadvertent conversations with the people around her.  Lauren is high on the spectrum and has an Aspergers Diagnosis.  This is one of the hardest to diagnose simply because people just cannot seem to watch a child like this one and realize that her idiosyncrasies are not poor behavior, but in fact the product of this child’s specific special needs.  It is a frustrating thing for many different children and parents of autistic children, typically, as many other adults seem not to fathom that someone so fascinatingly intelligent could be so completely unaware of certain basic concepts as boundaries, transitioning from activity to activity, and social awkwardness; these particular issues are often paired with other symptoms like sensory issues, and motor skills (fine and gross) all of which are often associated with autism. 

But that is the crux of Aspergers and Autism in general:  an inability to read and understand appropriate social cues in others; i.e. social expressions, tone, and perceptions of facial expressions.  These things do not always register in that aspect of communication for those with autism.  For those with Aspergers, they are distinctly different than their other autistic peers in that they do not struggle with speech.  In fact, Aspergers people often have high verbosity and their grasp of usable speech is incredible, but speech is not all there is to communication.  The interactions between people, their smiles, and their frowns, their silent shifts of body or tone are not always innately discernible by people on the spectrum; the truth is it is as foreign to them as it would be for someone to be lost in a another country unable to speak the language.  There is too much nuance involved with people’s expressions; there is a blatant and natural assumption by those not on the spectrum that everyone understands what an intention is.  It is this assumption that makes humans the ‘x’ factor in a world that is often already fraught with chaos due to sensory issues.  Children and people on the autism spectrum function better with set structured environments as a measure to help them maintain control of the fear that permeates their lives.  People are the scariest creatures on the planet, because human beings are unpredictable.  Imagine not being able to tell what a person’s tone, facial expression, or action could mean?  They live in fear that they will make someone angry or hurt by a wrong action or statement all because they just cannot gage it by what they see in others; often their instincts are to withdraw or try too hard to find a way to relate with others on a similar level.  The best way to be with a person on the autism spectrum is just to be completely and blatantly clear in all aspects of conversation.   

As we sat together, Lauren listened to a stream of classical music; it was soothing and delightful to watch her joy.


Wendee saw these behaviors and with the help of her external family, she was able get confidence in the things she was already noticing from her mother, a retired educator in special education, and her sister that began to notice that there were a few things that didn’t seem to ‘fit’ right; specifically the common thread of lack of appropriate socializations, fixations on specific things, and fine and gross motor issues.  With her parents, they set out for the first appointment with the specialist at Mary Bridge Children’s Hospital where specific and pointed questions were asked of Wendee and of her parents.  One such question that was asked involved whether or not any of Lauren’s actions seem similar to other family members. Both parents looked at each other and immediately said that they saw lot of Wendee in Lauren.  When I asked how she felt about this, Wendee had this to say:

As far as hearing my parents say Lauren is just like me, I wasn’t surprised.  I do see a lot of me in Lauren.  Especially with the sensory issues, I hate loud noises.  My senses are easily overloaded when there are just too many things (sounds, lights, bright colors, etc.) and I have to remove myself from that situation.

Bravely, Wendee shared with me that she suffers from extreme and almost crippling social anxiety which she has gratefully noticed as absent in Lauren.  Although she seems to understand her daughter better than other people in the world, she has acknowledged that sometimes hers and Lauren’s issues can feed off of one another creating environments of high stress for both of them.  As has been shared, many people on the autism spectrum do not innately understand boundaries or how to understand when behaviors might go too far (this is called an inability to recognize cause and effect; Lauren cannot always immediately discern that certain actions can have adverse reactions based on tone and expressions of others during an interaction).  “There have been times that she has gone over to groups of children she doesn’t know and has taken toys from them.  That’s hard…It’s those situations that my anxiety is triggered…I start to worry about what other parents are thinking and not only about Lauren, but also about my parenting.  I tend to over-apologize for Lauren’s behavior.”  These moments of panic sometimes cause Wendee to have trouble tempering her own tone in public in such a way as to not come across too hard; while letting other parent’s know that she does not find the behaviors acceptable.  Parenting on the spectrum is a teeter-totter of trying to help children understand and learn boundaries, while realizing that basic concepts are not readily understood by the child.  Knowing the balance is a difficult one and many parents struggle as society only sees a child that just appears to be misbehaving; when in reality, the child is just struggling to attain an understanding that many children of ‘normal’ development seem to already grasp.  All other parents tend to see is a child that is exceptionally bright not playing right with other children, to Wendee this perception is magnified and she feels panicked to ‘fix’ the situation so that Lauren doesn’t offend anyone.

I loved that Lauren is surrounded by so much family; there was love and laughter. It is so important.

We sat and discussed and conversed many hours and later in messages to one another about how things have evolved for her and her daughter.  Lauren’s father has always been a constant in her life, but as with many families with children on the spectrum Wendee and his relationship has had many struggles along the way.   It is their plan that this summer they will be moving to a larger city as a family so that Lauren can have access to better education systems that are not currently available in the small community that she lives in at the moment.  It will mean a move from the comfortable home that they have known, but a necessary one for Wendee to help Lauren grow into the person that she needs to be and for them to try to make it work as a family.  With such a huge support in her external family, they will not be far away in case they need them.  I look forward to seeing how they have grown in a few months when I do a follow up with them and a companion piece to show where they come from.

Per the usual, I have wanted to help raise awareness about autism.  I love this specific piece because it talks about the biggest issues that many face when on the autism spectrum:  acceptance.  Just because it seems like someone should understand things doesn’t mean that they do.  Autism is incongruent, while many cannot seem to comprehend the most basic of concepts they conversely can understand functions of seemingly more complex mechanisms.  Perhaps the most amazing and frustrating part of it all includes the fact that every single person is so unique that there is no box or standard by which to place them in/under.  It is what makes them beautiful and amazing; it is how they are all unique.   

Near the latter part of our conversations in the last week, Wendee said the most amazing thing about her own struggles to be in the world in conjunction to her daughter:  “I am sitting in the observation room at OT (occupational therapy) watching my amazing daughter and how much she touches the hearts of her therapists and I just decided to go ahead and let it all out…She has come so far!  I am proud of her…”  We all have things that we struggle with in this life, but the amazing things that touch us most often happen while we witness our children change others when likely their lives are so far more chaotic and uncertain than our own.  When our children are brave like that, how can we not find a way to be brave, too?  All it takes is for one person to share something about him or her to help someone else that may not realize that he or she is not alone.   

Wednesday, June 10, 2015

Autismisms: Girls and Speech



Two Fridays ago, my sixteen year old, partially verbal son looked me dead in the eyes with all of the seriousness of moving mountains and said to me:  “I wanna girlfriend.”  As if the world came crashing to a halt I stopped and thought, “Is that what I thought he said?”  His father was there picking them up for their weekend visit with him and we both looked each other.  Since I firmly believe that most of speech and autism is motivation I grabbed the bull by the horn.

“Well, Seamus, you know if you want a girlfriend you are going to have to try to use your words more,” without skipping a beat or breaking with eye-contact he asked as clearly as anything, “Why?”

Stunned into a small momentary moment of silence I said, “Well, girls like to talk buddy.  It’s what they often do best.  They sort of like it when you talk back and have a conversation.”

His eyes finally broke with mine and he seemed a little perplexed, but responded with, “Oh…okay.”

Wouldn’t you know it?  Wouldn’t you know that this sixteen year old boy has been trying to use his words more and more all of the time now?  Some of them are random, some of them are profound, and some of them are just for the sake of his voice being heard, but he is using them.  

 I realized that Seamus was unique as soon as he started expressing a distinct style in clothing, shoes, and accessories that mirrored what he saw in his peers.  He has even used his words very well a number of times in front of girls in the recent past that took me quite by surprise as he had been verbally silent up and until that moment when he started talking to the girl.  One particular incident still sits fresh in my mind and is a favorite of mine to share:

It was Christmas time and as a photographer I often deliver and meet people to drop off discs.  I had told Seamus if he was a really good helper he could get a hot chocolate at one of the local espresso stands.  As we pulled up to the window I told the girl that he wanted a hot chocolate and since he was sitting there she looked right at him and said, “What size do you want hon?” 

“What size do you got honey?” was his flirty response.

I stopped and turned in shock as the boy who barely had uttered a word to me all evening was having a very clear and succinct conversation with the cute 19 year old barista just now.  She replied, “Small, medium, or Large?”

He then says, “What’s your small?” 

She said, “12 ounces.”

As if the reality of the situation had struck him that he was talking with a very attractive girl hit him all at once coupled with his social anxiety…I watched a wide-eyed, open-mouthed Seamus freeze up and stop talking.  I thought I was coming to the rescue, but I said for him, “He will have a medium.”

Teenagers are the same no matter what and I suddenly got an eye-roll and a scathing sigh from him as he covered his eyes in complete and utter embarrassment.   How was I to know?  (Insert a little motherly giggle of delight.)

Small victories are bittersweet sometimes…when my sons were first pulled into homeschool I was told by staff that I was making a huge mistake and that I wasn’t realistic to believe that my sons could ever be truly potty-trained, speak or be able to function in a public setting without falling apart.  That was eight years ago and now they are speaking (although still struggling because they weren’t given the attention that they should have with speech in public school), they are both potty-trained (both were at three-and-a-half years old, but their limited speech made it hard to communicate and the school didn’t want to use the program I used at home), and I am exceptionally proud of the strides they have made in maintaining their social anxiety and sensory issues while we are out.  

There is a lot to be said for not being afraid to have expectations outside of conventional education and now that my sons are older I am seeing the other programs that have come into schools that seem to accommodate these children better.  We have some catching up still to do, but goals are made and now my sixteen year old has lots of new motivation to use his words!  Girls and Speech