Inception & Reflection - 10 Year Roller Coaster Ride: The Highlight Reel

A decade ago, I created a blog to "...serve as a record of my thoughts and experiences of my son's school adventures, to look back on his progress." It has been a therapeutic outlet just for me (and my five followers 😉)

So it began... "This was the breaking point..."

"We found no help and no relief. It was much worse than before, and I felt I was literally being crushed by the stress. I was stuck in a nightmare, and I had never been so homesick. I just wanted my old life back."

"Once we were back in the house, slowly, I could start to breathe again."

"So long and far removed, until the other day, when just like that, it returned. Happy."

"The situation has lots of great potential, and, for now, we are continuing forward."

"He is doing great, happy as ever, and adjusting well to the new school."

"It is possible things will now start to settle down and resemble "normal" life..."

"Just...Wow. This is such a change from what felt like monkeys flinging shit at our heads for the six months prior to enrolling in our sweet little new school. I am almost ready to rejoice and revel..."

"We're not there yet, but progress was made..."

 "...and I thought, "Holy sh*t. The fight is over."

"...feels like a huge developmental and academic leap of progress!"

"Everyone is so supportive and easy going. They really "get" us. It is a dream come true."

"We are so thrilled with the support and accommodation by all the staff. It is such a pleasure to have consistently positive stories to report..."

"...just another way I am amazed and inspired by how strong and resilient and happy FMO continues to be with all that he copes with each day."

"This year is going ah-MA-zing! Compared to last year, home study is so much better."

"It is very rewarding to see him expand his communication and gain so much more independence now."

"I try never to write the future, whatever will be will be. I do feel it is crucial to look ahead with realistic expectations to discover ways to widen the path to success and fulfillment for FMO."

"...we finally got every aspect of services we requested."

"When I turned 34, I heard that proverbial clock start to tick quite loudly. Our decision to "go for it" is a testament to how well things have been going... Parenthood has been nothing short an interesting ride so far, and I am excited to see the ways this new development will change our lives."

"I decided to save myself a whole lot of effort and headaches. Rather than take one of the pre-packaged curriculum available and have to modify it to the hilt, and still not love it, I created a complete custom curriculum for the entire year from scratch. "

"It just feels so time crucial as his optimal language acquisition window is closing, at almost age 10."

"It has been a voice inside, whining, nagging, ever louder... The voice says, 'Language is the basis for understanding social behavior. Language is the vehicle. Without the vehicle, how will he get from here to there?'"

"There will continue to be a hard road ahead. No matter how bumpy it gets, I will keep driving that vehicle until we get him there."

"I knew what it was like to be that parent that watches her tiny one grow and change, week by week, month by month, babble, turn over, crawl, walk. I knew what it felt like to casually enjoy sweet little milestones and watch them pass, carefree... for a while. Then I became the parent that fills out checklists and assessments, and each developmental step achieved became less so adorably precious and more so crucially important."

"...when he got the ABR today, it was a relief to finally know for certain he has no physiological issues, but a definite letdown that he is not a candidate for hearing aides. There's no point in doing anything other than accepting what is and what isn't. Nothing has really changed. We're doing everything we can."

"I have been on exactly 10 dates and seen 3 movies in the theater without my kids. For over eight years I rise early, give everything I have and some more I don't, fall down exhausted at night, only to lie and worry about what my son's future will be."

"...she told me, 'You need to come to terms with your son's real diagnosis.'
Thank you for your time. Your services will no longer be required. FMO has a great team with every service he needs, provided by caring, sensitive independent thinking, creative people. His dance card is full."

"Every moment of every day feels like precious time, sands slipping through the hourglass counting down to an impending deadline to produce A Functional Well-Adjusted Adult. Every time my "A-word button" gets pushed my stomach does a little clench. I take a breath and calmly interact for moment, and a precious moment is gone, wasted. If time could be bought, I'd rob a bank."

"I can hold out hope, pretty much indefinitely, that he can accomplish any goal. I never possessed any patience before FMO. Here and Now are the daily pills I swallow."

"I realize I cannot catch his gaze and his eyes drift up to the left. I repeat his name several times and touch his shoulders and face. My stomach clenches. My chest burns.

SOMETHING IS VERY WRONG

They attached electrodes all over his head and we made sure he didn't pull them out until it was over. No one's favorite half hour in history."

"...back in the ER after multiple seizures and uncontrolled vomiting. They gave him "rescue meds" and started him on Keppra."

"...now had a diagnosis, Temporal Lobe Epilepsy. He has two types of seizures, partials and complex partials."

"He is showing evidence of night seizures, so now we are on round the clock vigilance so he doesn't choke on his vomit. Even our best days can be gut-wrenching and heart-breaking."

"Once on the maximum dose of Keppra, the next option presented was to add Lamictal. He had a skin reaction while titrating up at a slow and tiny incremental rate. Back to the ER. His was not classified as the potentially fatal Stephens-Johnson reaction, but they don't mess around. If you get a rash, you stop that medication."

"It has been an adjustment switching his diet from basically all carbs to super low carbs and zero sugar... If someone told me a year ago FMO would be eating no bread, no bananas, and eating greens everyday (not hidden!), I would not have believed it."

"...and on the 40th day, without warning, his body spun half-way around from standing, like something unseen yanked his entire head, mouth and all, suddenly and sharply to the left. He fell with a lucky landing, cradled in the armchair, his head an inch from the glass end table. Then he shook and gagged and choked and broke my heart for five minutes."

"After nearly one year of karate, 3 first place tournament medals for OLO and a medal for FMO for kata in the special needs division. Suffice it to say, I never thought we'd see the day. My heart and cup runneth over."

"Nine years. Niiii-yeen. Yeee-errzzz. That is how long we have been working to help FMO try to learn to affirm and negate, answer yes and no questions. Yesterday. It didn't just click... There was a SONIC FUCKING BOOM!"

[Letter to a friend]

"You are working harder than you should for longer than is reasonable to accomplish more than anyone's fair share and denying yourself for the benefit of others because your heart is bigger than most and your spirit and strength make you extraordinary.  You are gonna get up everyday and put on your big boy pants and handle business because it's what you always do. Try try try to remember to work in time to care for and be gentle to you, especially when others forget, so you can keep loving your loves and being a warrior until it is your choice to be done."

[Unpublished entry]

There have been many times over the years that some wave of behaviors from FMO had me run down, tearing my hair out. Then, suddenly he'd have a breakthrough, usually in communication, and I'd get back my sweet boy for a long stretch. It got to where I would self-talk through the rocky days or weeks, "We've been here before. Hang in there. Watch for progress." After some foundation skills were built, FMO has made steady headway in educational work, advancing two grade levels per year in reading for the last two years, and making slow steady advancement in math. Throughout out these times a of measurable progress, there has never, in all his life, been a successive series of acquisitions that comes close to the explosive rate of learning FMO has demonstrated over the last two weeks. This young man is on fire!

And so we enter the next decade, MAO and me with some well-earned gray hairs, the formative years ahead for OLO, the end of childhood for FMO just over the horizon, and my hope that the future unknown will leave it's mark in laugh lines.

"Pressing on then, eyes peeled for sporadic cobbles of genius, compassion, and light."