Friday, September 9, 2011

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. 

Friday, September 2, 2011

My first IEP meeting… and I cried like a baby

The day seems so long ago now… June 3rd, 2008.  Looking back, it’s hard to believe that is the same woman staring back at me in the mirror today.  Let me back this up a little bit:

January 9, 2008 is the day my life changed forever.  I heard the words “your son has autism, and he is on the severe end of the spectrum.”  And I was floored.  I mean, don’t get me wrong, I knew my son was autistic… but SEVERE???  I looked down at my little 2 ½ year old happy boy, and suddenly all my visions of the future were blurry, because I was diving into unknown territory.  The special needs world wasn’t something I was familiar with, and being such a young mother, it also felt very intimidating.  Olin had already been receiving in-home Early Intervention therapy, but I knew right then that his life would now be a 24/7 therapy session.  I was ready to dive headlong into finding out everything that there was to know about Autism, and I was determined that my boy was going to break out of his so-called “shell.”  I was willing to try it all: the GFCF diet (epic fail), all sorts of crazy antioxidant drinks (those things cost HOW MUCH?! Fail.), and every mothaeffing toy on the market that was recommended for children with autism (Some failures… some successes… but at the end of the day I had a mountain of mostly frivolous toys).  I was determined that my son was going to speak and, “any day now,” at that.

March 5, 2008 is when things got a little crazier.  I figured out I was pregnant, and subsequently received confirmation from my doc.  So now I was a “freshly pregnant, new special needs mommy” with a full-time job, and that didn’t slow me down at all.  I left work early every day I sat in every single one of Olin’s therapy sessions (even if I dozed off slightly… hey, I was fatigued).  Olin went with me everywhere running errands; the mall, the supermarket, the drugstore, even the dreaded Wal-Mart (little did I know at the time that this was probably one of the best therapies I’ve put him through *pats self on back*), and I talked to him like he was listening and responding (duhhhhhh.  He is a human.  With ears and hearing.  He is a curious child.  Just because he doesn’t talk back, doesn’t mean he isn’t listening and understanding what I’m saying and enjoying the words coming out of my mouth).  Oh, we (I) talked for hours on end.

It seemed like every other day we had someone else coming over to our house to do some kind of evaluation and get everything set for the rapidly approaching new school year.  In the state of California, children with special needs start special education at age 3, and the summer school session was starting June 30, 2008.  All of us had to coordinate our day to meet up for Olin’s first IEP (Individualized Education Program) Meeting.  All fifty of us – ok, only about 7 – had the date and time set, and I had the day off work.  I had no idea what to expect.  I mean, of course I knew that we would be discussing goals, and methods to achieving said goals… but IEPs are so much more than that. 

June 3rd, 2008 is when I trotted my burgeoning belly into an adorable little classroom with very tiny chairs.  We all sat around a half-moon shaped table, and almost every face was new to me.  They asked what my goals for Olin were (to speak, to potty train, etc.), and they informed me what kind of educational goals they had in mind (to stack blocks, complete a puzzle, etc.).  It all seemed so simple: pick a goal, pick a date for the goal to be achieved, done.  And of course my assumption was that all goals would be met (we’ll touch more on unmet goals in another post).  Then they handed me this paper titled “Notice of Procedural Safeguards and Parents' Rights” and it seemed harmless enough.  It outlines my rights as a parent, everyone gave me email addresses and phone numbers, then it also discusses the “negative effects of special education.”  That seemed like an oxymoron, I felt compelled to point out the possible typo, when the school psychologist began to discuss bullying, picking up bad habits from other students, and things of that nature.  Thus began my stunned silence.  I blinked back the tears as I heard her say “especially if he rides the bus… it’s that much more noticeable that he’s in special education.  But obviously the benefits outweigh the negative effects.”  Noticing my trembling bottom lip, Olin’s new teacher chimed in and stated that her SDC classroom is over on the other side of the campus, by the kindergarteners, and that they don’t have a problem with kids getting made fun of.  I heard her… but I didn’t HEAR her.  All I could picture was cruel kids pointing and laughing at my baby.  We wrapped up the meeting, and I rushed through our polite farewells and just as the door closed behind me… I let it out. 

Did I feel pathetic?  No.  Did I feel overwhelmed?  You better believe it.  Was I scared?  More than you can imagine. 

The thought of someone ever laughing at my child, was (is still) more than I can bear.  My tears could have easily been blamed on the pregnancy hormones, but thinking back I still feel the tightness in my chest, and I know I would have cried like a baby even if I wasn’t growing one.  I cried all the way to my car… I cried my entire drive to Burger King (even sobbing pregnant mommies have to eat), and subsequently through the ordering and paying process, and I think I really scared the drive thru girl with my display of emotion.  I couldn’t help it, I was scared.  This was my moment.  This was my time to cry… to let it out… to come to terms with the different direction life was taking, and put my fears aside. 

Like I said, it seems like a lifetime ago.  My world has changed so much in the past 4 years since diagnosis.  Olin talking as more of a dream now (and that’s ok with me), hell even potty-training is on the back burner.  We have adjusted goals... and my boy is knocking 'em down :)  IEP meetings are now filled with laughter and happy greetings, and some happy tears.  It’s amazing the group of people that Olin has behind him, supporting him every step of the way.  His teachers show such genuine delight with every step he makes, and it helps me feel like I have an army behind me of people who enjoy and want to help my little man succeed. 

I’m stronger than I ever felt was possible.  I have Olin (and autism) to thank for making me into the mom I am today.  I am my son’s voice, and I’m not afraid to use it.