It’s that time of year again!  Animated conversations with the ones you love that go long into the wee hours of the morning. Laughing, and A LOT of crying. Reflecting on times of long ago; both good and bad, and excitedly talking about the here and now and what could be and what I know, in my gut, will be. An then there’s the wine…my tried and true friend. The one that gets me through, no matter what. No…..I’m not talking about the holidays…… I’m referring to preparing for Adam’s upcoming IEP.

For those of you who are unfamiliar with the term IEP, I am referring to an Individualized Education Plan. The 20-30 page ‘labor of love’ that is meticulously devised over many hours, days, and months for those of us who have kiddos who fall into one of the 13 categories of disabilities. I am lucky enough to have not one, but two children with IEP’s.  My daughter: Specific Learning Disability-Dyslexia; and my youngest son, Adam, who falls into 3 of the 13 categories of disabilities;  Autism, Speech and Language Disorder and Other Health Impairment – a seizure disorder. Are you confused? Exhausted? Shaking your head? Probably.Trust  me….I get it. in fact, this is how I feel most of the time. And I know that there are many, many, MANY parents out there, who just like me,  proudly wear the same badge on their chest that I do.   We are a very unique club.

Recently, my nights have been spent wide awake, obsessing and worrying, for Adam is up for his three year re-evaluation with all of, as I like to call them, the “ists” Over the next two months his occupational therapist, speech therapist, behavior therapist, school psychologist and the school social worker will evaluate him in their own areas of expertise to determine his growth. In the meantime, the “ists” have also assigned my husband and I our own ‘homework’; numerous evaluations which dissect our own personal points of view of our son; his behavior, attention, development, independent skills, early years, health history, current medications, etc. My hand is literally cramped from drawing over 800 tiny circles around answers to the questions and my eyes are literally crossed from the fine print that I have spent the past two weeks reading. As much as I know how important this information is, and how necessary it is to gather the most accurate information of my child, I really am so over answering these questions for I am now going on my 13th year of ‘doing’ IEP’s. By the time that I am done being cross-examined by mounds of questionnaires,  I truly start to wonder…”did this really happen or did I dream that’? I mean, on Adam’s really good days, “almost always” will apply. On the crappy days, “never or almost never” hits the nail on the head and then their are the days in between that  “sometimes” will apply. To an autism parent, each one of these days has it’s individual and unique meaning. They cannot just be lumped into 800 questions.  I mean, how do you really objectively fill out these forms?

So as much as I have been losing sleep, dreading these forms, fearing these upcoming evaluations of my son, and going through all of the different scenarios in my head of what these forms and these upcoming evaluations will tell us,   I was reminded this week of how far he has come since our last go-around of forms and tests in 3rd grade. I am often amazed and truly grateful that these “little” reminders present themselves when I need them most.

The first came earlier this week when his language arts teacher sent me an email asking me to be sure to ask Adam to show me the project that they had worked on in class today. She said that he was really excited to show me a story that he wrote and narrated. I couldn’t wait to get home from work, confiscate his iPad and watch.

Just three short years ago, Adam was not speaking complete sentences. He honestly could not even write more than 2 to 3 words in a sentence. Heck, on some days, we were even lucky if he could write a sentence. And then there was the time not too long ago,  that his neurologist considered him to be non-verbal.  He truly has come a long way.

My second reminder came on Friday evening when Adam tested for his green belt at his Tae Kwon Do school. He has been practicing the green belt curriculum, his forms, Korean terms and his pretty difficult board break, diligently, for the past two months. I grew more and more confident that he was going to pass his belt test with flying colors as I watched him warm up and practice his forms as loudly as he could. As my husband and I were chuckling because he really was EXTREMELY loud, his Master presented him with the ‘Exemplary Student’ award for “never stopping and never giving up”. Adam proudly accepted his trophy bowed to us and then happily continued right on with running though his various kicks, including my two personal favorites: the “frozen up kick” (front snap kick) and his “ass kick” (axe kick). 90 minutes later, Adam passed his belt testing and earned his green belt:

He even tackled that challenging board break!

My third reminder came yesterday. All three of my children participate in our school district’s phenomenal choir program. Once a year, all 8 choirs from all 8 schools in our district come together for a truly amazing day of choir workshops. The last hour is filled with beautiful pieces of music that our extraordinary music teachers have painstakingly worked on with our children over the first 9 weeks of school. It is a truly moving experience to see over 700 choir students from the elementary, middle schools and high school perform these pieces for family and friends in the school field house. Adam couldn’t wait for this day to come. He proudly dove into dress clothes and tie and stood in the front row singing very loudly and proudly…..

…and to think…just 3 years ago, we were lucky if he could tolerate one hour as an audience member. He truly has come a long way.

So tomorrow, I will be sending my 800 question manifesto back to the “ists”. From this and his upcoming evaluations,  a new plan will be devised and then presented when we convene at his next yearly IEP meeting in January. In the meantime, I have to keep reminding myself to keep putting one foot in front of the other, and remember an extremely valuable lesson in which my son taught me this past week…..To ‘never stop and to never give up’.

A few summers ago, Adam and I were sitting on the back patio, on a beautiful evening, having dinner. It had been one of those days; constantly on the run, driving my kids to one million places. Dinner was the first chance that I had to catch up with Adam and to find out how his day was at camp. I must have been chatting away, peppering him with questions. I’m not even sure that he was answering me. I will fully admit; I hate silence. After about the 6th question, Adam held his hand up and said “Whoa! Mom! You’re out of words in your talk jar”.

I remember his comment stopping me dead in my tracks; my jaw dropped. I also remember shaking my head and chuckling, for he truly has a knack for saying extremely quirky things that initially don’t make sense. However, after thinking about it, they actually make a WHOLE lot of sense. He just told me in his own quirky way to “shut up”!   I often comment how there are some true advantages to autism directness. I love that these kids say what they mean.  In their minds, the sky is blue, the grass is green, and every other aspect of their life is either black or white.  After that night on the back patio, I silently vowed that I was going to keep this comment in my back pocket for, for in my opinion, it was brilliant. I knew that someday, I would find this phrase to be quite useful…… And for me,  “someday” came this past week.

For the past five days, I wasted many hours of my life , trying to convince an individual that Adam could participate in an activity independently. Unfortunately, this person went to all ends of the earth to wear me down beyond belief. In the end, I decided that it was not worth my time to try and convince this person otherwise. In my opinion, Adam was being discriminated against, not to mention my feelings that I was being harassed and judged as a parent. There are just some people who unfortunately are too paralyzed by their own ignorance, fear, and assumptions,  not only about Autism, but life in general. Over time, I have learned, in these situations, that I will not get anywhere with their narrow mindedness. Thus, my new favorite mantra:

As much as I continued to remind myself about the circus and monkeys, I admit that my level of frustration continued to multiply. I continued to obsess and my anger continued to grow.  I couldn’t fight back the tears. I had many lengthy conversations with this person in my head. I imagined all of the inappropriate things that I would like to say. I imagined my best upward cut clocking them right in the chin. I imagined my best roundhouse kick firing right at their gut. I even (immaturely) imagined tripping them flat on their face and yelling “ha, ha….ha, ha, ha!”. Or my most favorite, just flat out tackling and choking them. As I am reveling in my mental images, my emotions then turned to sheer panic, and self doubt; questioning myself whether  Adam will be able to, one day, go to college, be able to live independently, and find a job. This made me even more angry. I was so mad that this person, and their narrow views, caused me to doubt all of the things that we have fought so hard to put into place for our son. To doubt all of his many accomplishments over his short life. So, to this person, I would like to say…..

 “You’re out of words in your talk jar”!

It was only after a night on the sofa eating ice cream and watching mindless reruns of anything I could find, that I realized that I had to take a step back and remember all of the good that surrounds Adam and our family. All of the things that life has taught us about raising a child with Autism. I began to make a mental list of all of the people that I would like to thank, and I suddenly realized that this list of positives far outweighs the negatives. And to each of these people, I would like to say:

• Thank you to all of Adam’s wonderful doctors who always speak directly to him and ask him your questions directly and concisely. In addition, thank you for your endless patience in answering all of my many (and sometimes ridiculous) questions.
• Thank you to the wonderful directors of the school and community theater programs who always find the perfect role for Adam in your plays and musicals.
• Thank you to Adam’s wonderful art teachers at our community art school who “shoo’ me away at the door and allow Adam to independently express himself in his most favorite way for two hours every Wednesday.
• Thank you to Adam’s Tae Kwon Do Instructor who tells me that “he will see me in an hour” while he consistently holds Adam to the highest standard just like the rest of his class; because he KNOWS Adam can do it.
• Thank you to Adam’s teachers who roll up their sleeves, dive in with your “can do attitude”, and hold my son to the same standard as all of the other students in his class, because you also KNOW he can do it.
• Thank you to Adam’s soccer and baseball coaches who work so hard and dedicate so much time to ensure that he can play the two sports that he loves. 
• Thank you to all of our wonderful friends who never, for a second, treat Adam differently.

As I continue to reflect on my past week, I realize that among all of the aggravation that I experienced, I am truly grateful for the reminder that there is a lot of good to be found around me. My suit of armor as a special needs parent is even stronger. And on that note, I would like to say:

HEY INTOLERANCE, ASSUMPTION, and IGNORANCE!!!

You’re Out of Words in Your Talk Jar!!!