Tap, Tap, Tap... Is This Soapbox Tall Enough?

It still cuts deep.  That r-word that people are so used to saying: retarded. How did a word from an actual medical term, become a word filled with such atrocity? Just like I don’t understand how people can call something “gay” when they are referring to something that is lame, or seemingly stupid. How do you think that makes homosexuals feel? I’d venture to guess it doesn’t make them feel so great. Though the misuse of the word “gay” is mostly heard in people aged 30 or below, I have heard people of every age range use the word “retarded” in my presence when speaking of people with Special Needs and/or referencing something stupid, lame, moronic, etc. Although my son hasn’t been diagnosed with Intellectual Disability, formerly known as Mental Retardation on top of his Severe Autism (classic nonverbal), many of his behaviors mirror those of my high school peers who were in the Special Education Program, and I heard many of my classmates often refer to them as the “retarded kids.” I have to admit, I never even used the word back then. Maybe it’s because I have a very empathetic personality, but it’s always been very easy for me to put myself in someone else’s shoes. I used to think, “Wow, what if his mom was around and heard someone say that about her child. She would be crushed.”

Well guess what? It is a crushing feeling when I hear that word. I can’t tell you how many times I have posted on my Facebook page in the past few years about my pledge to end the word at Spread The Word To End TheWord, and the fact that “retarded” is a word that marginalizes millions of people with disabilities –or different abilities– worldwide. Please do not ever describe another human being, or something moronic as “retarded.” When you use that word, it is so obvious and clear that you are placing them at a level below that of yourself, as if they are less of a person because of different abilities. How do you think that makes me feel? Let me share a little secret, it certainly makes me question how you view my son, and I don’t like that feeling. Some of you may think I’m being overly sensitive about this, and that’s ok, because I AM overly sensitive about it. How would you feel if you have heard people in supermarkets, restaurants, malls, etc refer to your child as “the retard making all that noise” or you heard the table next to you state “that retarded kid is ruining my dinner” or a family member state “that’s retarded.” Yup. Feels like shit.

So now let me share with you some other options when describing a fellow HUMAN BEING who happens to have (to name a few) Autism, Down’s syndrome, Fragile X, Angelman syndrome, etc.:

•  differently-abled
•  special needs
•  someone with a disability

When trying to express your dislike or opinion of something: 

• dumb
• lame
• stupid
• un-fun

(the aforementioned words are only  offensive when used to describe a person with disabilities. They are, however, completely acceptable words in the English language –imagine all those times you used the “retarded” in my presence– for example: “My math teacher is so lame” or “that car just made a stupid move” or “Hahaha you are so dumb! LOL!”)

I’m both nervous and excited to announce that I made my first New Year’s Resolution, ever. This year, I resolve to speak up every single time I hear the word used. Remember that. Do you want to be that stranger in the supermarket that I make a mockery of? Do you want to be that person in line at Disneyland that I politely tap on the shoulder then “accidentally” spill my soda on? Or the family member that I have to pull aside and make an awkward moment? I hope your answer to all of those questions is a resounding NO!!!!!!!!

Please show some humanity/empathy and realize that the word “retarded” is unnecessary in everyday language. Take the pledge and Spread The Word To End The Word today.

“Different, not less.” –Temple Grandin

Olin’s surfsurfsurfsurfsurfing safariiiii (our day at Surfers Healing surf camp)

I don’t think I slept a wink the night before because I was so nervous.  I mean, I was sending my kid - who has severe autism, is nonverbal, and doesn’t know how to swim on his own - into the ocean with a perfect stranger.  Don’t get me wrong, I read the rave reviews and was assured by many parents that these professional surfers really do know what they are doing, but the mama bear in me just couldn’t help being a little scared. 

The morning of July 13, 2011, I was afraid that Pacific Beach wouldn’t be prepared for Olin… but the volunteers at Surfers Healing wiped away all of my fears the moment we arrived.  It was a bright, sunny day (proven by the horrible sunburn I ended up with) and as we walked down to the beach, there were so many people!  I saw the huge Surfer’s Healing tent and headed straight over.  I knew Olin was in the first group of the day, so I got him checked in and picked out an adorable wetsuit for him to borrow because the water was a little chilly. 

When they called out for the first group of surfers, I walked Olin over to the volunteers that were helping get the children secured with life-vests.  He was a little reluctant when the time came to clip the life-vest on, but the girls spoke to him in very soothing tones, and he calmed down right away.  He was whisked away by two volunteers holding either hand and headed for the ocean.  Olin ended up being paired with the tallest surfer out there, so they were really easy to spot!  I stood at the edge of the water with about 50 other people and watched as Olin sat on his knees on the board while his surfer did all the hard work of paddling, paddling, paddling… 

Right away, a little boy and his surfer caught the first wave and the roar of applause from the entire crowd was amazing.  We were all there supporting each other’s children, and rooting them on (it made me tear up a bit)!  Suddenly, I see Olin and his surfer riding a wave, and everyone started whooping and hollering again J

I really wasn’t prepared for my kid to catch the second wave of the day, so I biffed the big moment and didn’t have my camera ready… but I did manage to catch the tail end of Olin’s pipe dream in this little video:

 I had to laugh watching him fall off the board and wipeout because it’s all a part of the surfing experience, and his surfer picked him right up out of the water every time – one handed mind you, which is no easy feat with a 60 pound child –  and plopped him right back up on the board!!!!  By this time, I was armed with my camera and I just couldn’t stop taking pictures.  I wanted to capture every moment of his experience:

Paddle away, dude

Look at all those surfers!!!

Go Olin, go!!!!

Olin ended up catching about four more waves, and after an hour or so of being the coolest surfer dude ever, it was time to come in and let another kid have a shot at riding the waves!  Olin was smiling (and shivering) and I could tell that he had such a great time out there.  I wrapped him in a towel, and we sat in the warm sand and ate our lunch while we watched the other surfers enjoy the ocean.  Olin and I are what I like to call “people watchers” and I loved observing all of the other families and children.  I was particularly impressed with a female volunteer who really spent time making kids feel comfortable and playing with them while they were waiting for their moment.  I enjoyed watching this one teenaged boy play with her, because he had been very reluctant to the whole experience until she came over and started to play with him.  It was so awesome to watch everyone have such a great time, because I know every child involved will not soon forget their day with Surfers Healing.  Olin and I still talk about it (ok, I talk about it and he gives me a knowing smile). 

I will never forget this day, and I hope that it can be on repeat every year!  THANK YOU SURFERS HEALING FOR EVERYTHING YOU DO!!!!!!

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.