Never Stop. Never Give Up. ….But if Something Gets in Your Way, Just Give It an ‘Ass Kick’!

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’.

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