A discussion with this boy's parents was necessary...

I had to talk to another kid’s parents at the park today… and I was nervous

Have you ever had that moment where you feel like you just said something, but you didn’t hear any sound come out?  So you repeat yourself and your voice cracks.  Well that’s what happens to me when I get nervous… and when the moment presented itself and I HAD to speak up to another kid’s parents at the park, I had a hard time concealing my nerves.  Most people don’t know this, but I am actually a very shy individual.  For example, at a party where I don’t know many people, the term “Wallflower” would be an appropriate description of me.  And let’s face it, being a mom of a child with autism, many of my interactions with other parents consisted of a quick smile as I ask Olin to “stop playing the little girl’s beautiful (usually an embellishment) hair,” as the mom politely (in her opinion) ignores the whole interaction. 

I had really hoped that the park wasn’t too crowded this particular Saturday morning.  The parks around my neighborhood always seem flooded with children, and that just heightens my senses and puts me on worry overload.  So as we were approaching and I noticed that there were cars spilling out of the parking lot onto the street, I lightly suggested we turn around and go home to play in the yard.  My suggestion garnered immediate begging from Ruby, and painful moaning from Olin (that’s when I know he is NOT a happy camper); I quickly found a spot and unloaded my precious cargo.  I found a shady bench to place myself with a view of the playground, and Olin decided park himself in the sand directly in front of me, while Ruby made fast friends with a couple of kids and went scaling the play structure repeatedly.  My boy loves the sand.  He will sit for hours just putting his hands under the sand and lifting them out so he can watch the sand slowly trickle off (put that on repeat for however long I let him sit there before I tell him to “get up and play a little”), and that seemed like today’s choice of activities!   

In my many observations, I can tell you that most kids seem to ignore the kid who is playing with the sand like that at a playground because they are too busy climbing, sliding, swinging, etc., so when this boy walked right over to Olin and sat in front of him in the sand, I was immediately surprised.  I looked around for the parents, because in the possible event of needing to run interference, we’d be face to face anyway… very hard to tell in this crowded park.  He asked Olin if he could play with him, but Olin stared straight ahead as if no one else was there.  The boy seemed unphased and must have taken notice of Olin’s obsession with the sand, and asked Olin if he wanted to make a sand castle… again, no response… again, persistence from kid.  The boy filled the bucket with sand, then overturned it to create a perfect little mound that would be the foundation of his sand castle, and then Olin reached over and put his hands through it until it was completely demolished (I really figured the kid would give up right about here), so the boy tossed the bucket aside and did what Olin was doing – you know: hands in the sand, lift them out, yadda yadda yadda.  I smiled and wondered if Olin noticed the young boy’s concerted effort to make a new friend.  A few minutes of monotonous sand trickling was all he could seem to handle, so the boy asked Olin if he wanted to go on the swings with him, which elicited a brief moment of eye contact, but nothing more.  It could have been such an easy moment for the boy to just walk away at this point and run off to swing and slide to his heart’s delight, but still he stayed.  A few more minutes and the boy rose from the sand, and told Olin that he was “going to the swings, so if you want to, we can play more over there, ok?” (Adorable right?).  I looked again for the parents, but they were still blending in with the crowd.  I stared at Olin, alone once again in the sand, and he met my eyes and smiled.  I simply couldn’t let this little boy go without being unrecognized for his attempt at friendship with my son.  I figured this would be an incredible learning opportunity for the boy and a great teaching opportunity for his parents… but alas, I wasn’t going to approach every parent out there asking “is that your kid?”

Shortly thereafter, I saw a couple stand up and call out to their son that it was time to go, and wouldn’t you know, it was that little boy.  I called out to the parents, and they didn’t turn my way (revert to sentences 1 and 2), so I called out again, and they heard me and began their approach.  I told them that I wasn’t sure if they noticed that their boy was trying to play with mine, but his attempts were unsuccessful, and I felt he deserved a reason.  I explained that my son has severe autism, and is non-verbal, and obviously has a difficult time socializing.  I expected a quick “Oh, okay,” and a swift departure, but the parents surprised me too.  They were clearly on the same wavelength as me, and did not want to pass up this learning/teaching opportunity, and the mom took her son to another bench and started talking to him, while the husband chatted with me a little more about the soccer league their son was in (hence their reason for being at the park) and told me how handsome Olin was, and said that they love kids.  The wife finished with the son, and came over to tell me that the little boy had said he thought Olin was being shy, which is probably partially true (like mother, like son?).  I told them that I just couldn’t let them leave without thanking them for clearly teaching respect and acceptance to their child.  They thanked me back, and expressed their hope of seeing us there again (parking there was horrible… not likely, but a nice thought).

I just figured that I so often open my mouth and become very outspoken when I’m defending Olin or speaking up against rude comments or stares, then why hesitate and become a bucket of nerves when I’m given the opportunity to lend positive feedback to another parent?  I think I feared that they wouldn’t be understanding, wouldn’t be receptive… I feared they wouldn’t realize the great impact their son had made, but I gave them the benefit of the doubt, because I, like Gandhi, believe in the good of people.  I know I made a positive impact on them, and I know it gets “paid forward” from there…and I made those parents so proud of their boy, it felt goooood!

Here's some more cuteness:

Sandy fun!

I "spotted" Ruby!

King of the playground!!!!

The Long Road to Autism Diagnosis (and all the signs that were slapping me in the face along the way)

In Hampton, Virginia on June 26, 2005 @ 1:09 am EST, a ten pound, healthy baby boy named Olin made his debut on this Earth… and I was a very nervous new mommy.  He continued to grow and grow, and thrive on breast milk.  I returned to work after three months and Olin had a very easy time transitioning from being home with me to being with a babysitter, and I thanked my lucky stars for that!!!!  I always said, “Olin is horrible birth control!  He is the easiest baby ever!!”  He continued to develop, and started sitting up unassisted around 6 months, and he used to make the sweetest cooing noises at me… and Olin had this *squeeeeeeeeal* of a laugh that could melt anyone’s heart.

Three Day Old Piece of Perfection

When Olin was around nine months old, he got his first (excruciatingly painful) ear infection, that seemed to last FOREVER… it took two rounds of antibiotics and one round of steroidal drops to finally rid Olin’s ears of that nasty infection.  He wasn’t crawling yet; wasn’t saying “hi,” “bye,” “mama,” or “dada,” but the doctors didn’t seem to mind, and I didn’t think anything of it either.  At around ten months, Olin had his first hearing test because I complained to the doctor that Olin wasn’t responding to his name, and I feared that his ear infection did some damage to his hearing.  He continued to have six ear infections over the course of twelve months, which just fueled my fear for his hearing.  My focus was Olin’s hearing, so I made sure he had every hearing test that existed to rule out any hearing loss.  He had a rudimentary audiology exam ten months, and they confirmed at that point that he did not have fluid in his ears, so there was no need for tubes (phew… sigh of relief for the nervous mommy).  Me and Olin packed up our bags and moved back home to Southern California without fear of his eardrums bursting in flight (I said I was a nervous mommy).  It was also around this time that I first observed how Olin seemed to realize when printed products (books, magazines, etc.) were upside-down, and he would always turn them the right way.  I would put upside-down books in front of him all the time and show people how he would pick it up and turn it the correct way.  Olin also started crawling like a little speedster, and my worries for his gross motor skills slightly diminished.

The next Well Baby Check-up was when Olin was around 12 months old, and, as I said, we were now in California.  At home, I noticed that Olin became obsessed with shoes, but not just any shoes; only ones with laces.  I didn’t realize the extent of his obsession, until we were sitting in the extremely crowded waiting room at Pediatric Partners, and Olin crawled around and untied every shoe lace he could find.  I laughed and chased him around the waiting room until we were finally called back.  Dr. Winter told me Olin was in the 90^th percentile for height and weight, and that was no new news to me.  The doctor noticed that Olin was sitting in my lap and asked me if he was walking unassisted yet.  I shook my head “no,” but said he walks holding onto furniture, but just won’t let go.  Not a huge concern still at that age, but I was told to make sure he was walking by 18 months.  Then the usual questions of developing language were asked… and those were easy to answer: At this point, Olin was still making his cute cooing noises, but even those were seldom anymore.  In 2007, there still wasn’t much written or discussed about Autism, and it wasn’t even something that crossed my mind still… but here is a little checklist that is now highly recognizable:

If by twelve (12) months of age, your child:

Ø      Is unresponsive to his/her name

Ø      Has little to no verbal development

Ø      Makes little to no eye contact

Ø      Displays obsessive behaviors

*if any or all of the above statements are true, you should discuss concerns with your doctor and insist on a screening for autism or any other developmental disorders, and you should contact your regional center immediately to see what kind of services your child may qualify for.

I, however, was an autism dummy.  The word wasn’t even in my vocabulary, and still wasn’t uttered aloud by anyone around me.  I just figured my son was... quirky?!  Olin's behavior enthralled me for hours on end, but I thought all kids did these kinds of things (I had no other child as comparison, give me a break).  Check out this video - Olin used to do this at least half of the day, every day:

Then when Olin was 15 ½ months old, he finally started walking on his own… VICTORY!!!!  Olin still had no spoken language, and still didn’t respond to his name.  If eye contact was successfully established, it was fleeting.  He didn’t point or gesture to desired objects… he was just… there.  I was still so concerned about his hearing, so we scheduled a B.A.E.R. test which had to be administered in San Diego at the Children’s Hospital, and was a ten week wait.  At 18 months, Olin had his B.A.E.R. hearing test.  They don’t give you the results immediately, so we had to make our follow-up appointment with our regular pediatrician for the results.  As we sat in the waiting room, Olin scurried out of his chair and crawled all over the floor untying every person in the room’s shoe laces, and I tried to laugh it off that he was just a little rambunctious, and still obsessed with laces.  We were finally called back, and I was told that his hearing was perfect… but no sigh of relief this time (don’t get me wrong… it’s not that I wanted my son to have a hearing impairment… but at least it was some kind of explanation for me).  I was still in the dark as to why my doe-eyed, curly-haired little boy wouldn’t look at me, or give me hugs and kisses, and seemed to not hear or understand the meaning of the word ”no.”  I was lost. 

A month later, Olin’s obsession with shoe laces and various other objects that “tie” or “dangle” in any way, shape, or form continued to grow.  He loved spinning the wheels of cars, but covered his ears at the loud noises many toys cars made.  My mom told me that I should try and get more evaluations for Olin, because, let’s face it, at this point it was obvious that there were significant developmental delays, but I hadn’t the faintest idea where to start!  There’s no handbook for this.  Every parenting book teaches you step-by-step, year-by-year of typically developing children, but there was nothing to prepare me for developmental delays and the steps you should take if you notice any.  I started with the doctor, and he gave me a piece of paper with information for the Inland Regional Center.  I put it aside and didn’t give it much thought… this paper told me nothing.  My mom continued to hound me (thanks mom) about making phone calls and making appointments.  She could see my frustration building, and asked if I would like her to just make the phone calls for me.  So I gave her every piece of paper I had, and she went to work. 

In March 2007, three months before Olin’s third birthday, we finally had an appointment with IRC… and the appointment was three months away!  Three (very quiet) months went by, and Olin’s very first Case Worker knocked on the door.  After a few hours of questions and observation, she agreed that there were significant delays, and said Olin’s infant education services would start soon.  She explained that someone would come to our home twice a week to do educational drills with Olin, and help develop skills that were clearly behind.  She also said that the next step would be making an appointment with the child psychologist, and she said she would call me as soon as she found out the next available appointment.  Child Psychologist?  Whaaaa????  I asked the following question: “What is the Child Psychologist for?  My son doesn’t even talk,” (I’m shaking my head as I type).  She nonchalantly responded that a Child Psychologist is the one who must diagnose Autism.  There it was.  The first time the word was uttered: Autism.  I brushed it off and figured it was just a formality, because my happy, huggable, timid toddler didn’t “seem” autistic to me (again, shaking my head).

January 9, 2008 seemed to take forever to arrive.  Me and Olin, with my mom in tow, trekked up to the Inland Regional Center and met with the Child Psychologist.  She handed me some papers that asked somewhere in the range of a million questions (I lost count).  While I was filling out the questions, she decided to observe Olin in the waiting room around the other children.  I tried to focus only on the questions I was supposed to be answering, but I couldn’t help watch as my son walked around this waiting room filled with children, and didn’t engage one kid.  You would have thought that he was alone in a room.  He looked around as if nothing else existed (a quality I now admire).  I finished the questionnaire(s) and we headed into her office.  It was then that I realized she was wearing a cardigan that could be tied at the waist, and she had it untied and dangling… CRAP.  I knew Olin wasn’t going to focus on anything else.  At this time, I still considered this whole diagnosis as some kind of “test” and I thought that if the environment was perfect, that he would “pass” this test, and not be considered autistic, or at least be considered only mildly autistic, or high-functioning, because everything I seemed to read about talked about “high-functioning” and “mild autism” but I was so wrong.  She tried to get Olin to play with various toys, and Olin showed no interest.  When she brought out a toy that Olin had trouble figuring out, his solution was to pick it up and bring it to me.  I told her he does that all the time (I thought that was a perfectly appropriate way for a 2 ½ year old to ask for help… again… shaking my head).  She tried to get Olin to put pegs in a peg board, no dice.  I sat there the whole time silently pleading for Olin to just do one of the things she was trying to get him to do.  When she said she had enough data to make a diagnosis, we sat on the couch and waited for her to gather up all of her papers.  She pulled out this one piece of paper, and unfolded it to reveal a huge scale.  That was the first time I ever saw an Autism Spectrum Disorder scale.  I saw the end that was labeled “mild” and realized it took up almost the whole scale, followed by “moderate” with a decent sized chunk, and “severe” with just a few inches on the end.  She took out a pencil and began to explain the scale, then she dragged her pencil along the scale to indicate where Olin was on the Autism Spectrum.  With my eyes focused on “mild” her pencil darted over the beginning of “severe” and I think my heart skipped a beat.  

In all of my euphoric dreams of the future, I never had prepared myself for having a severely autistic child, and I wouldn’t change him for the world.  Olin and autism have taught me so much about life, love, and humanity.  I look back now and, of course, I can see all of the signs that were slapping me in the face: no spoken language, stimming/obsessive behaviors, little to no eye contact, and the unresponsiveness to his name (though the latter two have improved leaps and bounds over the past several years).  I have since learned to live without fear and worry, because all things will work themselves out, everything happens for a reason, and life goes on…

Could life be sweeter?

*A special thanks to Beth Beattie @ Beattie Studios for these beautiful portraits at the end :)
Contact Beattie Studios today for your 2011 Holiday Portraits!

It’s Mommy’s Turn for a Little Therapy!

ABA Therapy, Speech Therapy, Occupational Therapy, Physical Therapy… my life is engulfed in therapy… and none of it is for me!

Sometimes I feel like I’m going crazy... I have a two year old who enjoys making me feel inferior (even speaks to me in a patronizing tone on occasion *LOL*), and a six year old with classic nonverbal autism who, I swear, thinks every day is a new test to “see how well mommy really knows me and can figure out what I want.” 

I’d like to say thank you to each and every one of you for being my personal counselors!  This blog may not seem like much to you, but it means a lot to me.  Often times, special needs parents (and parents in general) just need a sounding board… and outlet, if you will.  For my entire life, writing has been a passion of mine; a way to escape; express emotion; or gain closure.  Hell, one time my way of telling off an elderly fellow for being mean to Olin in a restaurant came in written format and was personally delivered to his table!  If you are reading this and you are also a special needs parent, you can most likely relate to me.  I find myself reading so many blog posts by other parents, and I find myself thinking that’s me in someone else’s body!!!!!

I started reading blogs and realized that so many parents felt just like me (who knew?!).  Reading those blogs helped me feel like someone else gets it… even if that person doesn’t know me, they still GET IT.  I feel like you (yes, you reading this) and I have a bond.  Even if you don’t know me, you’re listening to my stories.  You are curious about my life, and how it may compare to yours.  It you’re a special needs parent, I hope you feel a sense of camaraderie here.  And even if you’re not, I hope you feel inspired to continue to practice and teach your own children empathy and understanding.  It’s not easy to explain to someone the sounds of frustration coming from my boy when he’s having an especially difficult time showing me what he wants; or the sounds of happiness when he’s discovered some feathers to throw and watch float through the air; or the combination of glee (she’s such a fantastic sister!) and longing I feel while watching my little baby girl help her big brother get his shoes on.

I figured I would give blogging a shot, and the response from my friends and family has been overwhelming!  I feel so empowered… I feel like I’m making a difference, even if it may be small (for now).  I prefer blogging to therapy because my “counselor” actually WANTS to hear my thoughts, you are not being paid to listen - not that I’m discounting therapy or counseling in any way, shape, or form… it’s just never been for me.  I enjoy sharing my stories with you and giving you a peek into my not-so-mundane life. 

A Picture is Worth... Well, You Know...

 So I'm pretty convinced that my little guy is half-fish... he has this uncanny connection with the water.  He seemed so peaceful out there at the water's edge.  These are rare moments indeed, when my little man (who has severe autism) can just relax and be in such a tranquil state.  It makes me wonder if I'm missing out on the beauty of these small moments...

 I captured these photos as if I was looking through Olin's eyes.  They make me feel so calm, it's no wonder why leaving the beach was an all-out tantrum... but who could blame him?

I often ponder what my son must be thinking at any given moment.  Does he notice the stares that come from grown adults and children alike?  Does he notice the rude comments from people who think that speaking loudly under their breath makes them look like a superhero in the checkout line at the grocery store?

I hope that answer to those questions is a resounding "NO!"; and judging by the transfixed smile plastered on Olin's face 99.9% of the day tells me that if he is paying them any mind... he certainly doesn't care; nor do I.  I always tell my kids to have fun and be themselves no matter what!  So they do just that, and we laugh, and play, and have an all-out blast every day.

Can you feel the longing he has for the water?

Standing on the edge of the Earth...

It's days like this that make me want to freeze time.  These moments are what life is all about. 

SPLASH!

My Wordless Wonder...

Autism is a subject very near and dear to my heart.  I find myself reading blogs and articles about autism all the time to connect with people going through the same things as me.  They are a source of inspiration and support for me.  They make me cry; they make me laugh; they give me hope.  I don’t plan on always writing about autism, but I’m sure it will be a subject that pops up most often.  If there’s ever a certain question you have about autism, go ahead and ask :)

My son Olin was diagnosed with severe autism at the age of 2, and is now 6 and is still non-verbal.  I know a lot of my friends and family wonder what it’s like to have a child who doesn’t speak, and has never spoken (even though I’m rarely asked… I’m a bit of a mind-reader and I already know what you are thinking).  Well, I would like to sum it up for you.  My life is… a constant guessing game.  It’s a series of gestures, pictures, head nods, reaching, kicking, pushing, pinching, and ear-piercing screeching to come to a conclusion.  Both of us end up tired at the end.  When he’s sick, I don’t usually have any way to know until he’s at the point of tears and in so much pain and misery; that makes me feel horrible, but I know that I’m only human and I understand that this is just what comes with the territory with having a non-verbal child.  Still, IT’S FRUSTRATING… but you know what I always tell myself???  At least I have my words to let out my frustration and to channel it; Olin doesn’t.  I wonder how I might feel if no one understood what I was trying to say; Olin feels like that every second of every day, and he still manages to have a smile on his face 99.9% of the time!  I am continuously hearing parents tell their children to be quiet… this is a thought that is beyond my realm.  Every day, I dream and long for Olin to speak (so how could I ever imagine telling him to be quiet?!) knowing that it will not only ease my frustration with autism, but his frustration as well.  Sometimes I even forget what typical 6 year olds are like, the way that most of them can articulate their words and sound like little grown-ups, so I’m always very genuinely impressed by all children’s’ linguistic development!  And Olin’s development is so beyond words, that my focus isn’t usually on the fact that he doesn’t use our language.  He speaks and communicates in so many other ways, he’s a resourceful kid!  He has the cutest humming sound he makes when he’s happy, and it is one of the best sounds in the world.

Now, I’m lucky enough to also have a daughter.  Her name is Ruby, and she’s 2 going on 22.  She’s happy, rambunctious, boisterous, demanding - basically she’s her brother with words.  Ruby loves to speak for her brother and jump to his defense if he’s ever getting in trouble.  She gets excited when he reaches new milestones, and always says “I’m so proud of you, Olin” (I get teary-eyed every time). I love watching their relationship develop.  Olin has blossomed so much since becoming a big brother.  I also enjoy watching him play keep away with her because he realizes how much taller he is and he can just hold said object of desire out of her reach.  She jumps up and down reaching for it, and he smiles the entire time.  Obviously I don’t enjoy watching Ruby get angry and sad, but the fact that he’s playing keep away with her is such an awesome cognitive and social milestone!!!!!!!!!  I always just tell her to find something else to play with, because Olin rarely wants something so badly, and it’s always followed by a glum “Okkaaaaayyy,” and she quickly moves on to usually play games on my phone or coloring. 

In short, I love my life.   

As I’m typing this… Olin is cuddling with me, and Ruby just stole my soda.