This is, hopefully, the last “sorry I’ve been MIA” posts — an apology to myself as much as to you — with yet another promise-to-myself that I’m going to change. I know that the commitment to change is how things eventually GET changed. So, I’m here to make that commitment… to focus on my happiness project which focuses on fostering change in the treatment and education of children with Down syndrome and all people with special needs! Again!
I’ve been blogging for 4 years now. Things changed drastically for me about 20 months ago when I rejoined the world of the working stiffs and got myself a paying gig… complete with deliverables reliant upon upstream contributors and can’t-hit-’em-unless-you-work-through-the-night-and-weekend deadlines!
In the 28 months of blogging preceding my part-time return to the corporate grind, I was a bit surprised to find that, on average, I posted 3 times a week (12 times per month) about those things that keep me happy: acknowledging all I have to be grateful for; recognizing the folks who restore my faith in humankind through their random good deeds; laughing with the angels God gifted me in my three children… who all happen to have special needs; and the advocacy efforts I undertake on behalf of My Beautiful Angels and all children with Down syndrome.
In the 20 months since I started working, I’ve posted, on average, ONLY two times per month… including a few months I was so busy I didn’t post at all. Imagine a year-and-a-half where I could NOT find even 10 minutes to jot down a few words acknowledging the many things I have to be grateful for; to tap out a funny story about My Angels (assuming I was present enough to notice one); or to pen a brief description of my efforts to change the world for the better through advocacy! Worse, imagine I barely even had time to feel gratitude or happiness, or to have fun with my children or advocate on their behalf, let alone write about it. Nearly all of my waking hours and many of what should have been my sleeping hours was usurped, hitting deadlines and, often times, barely putting one foot in front of the other. Exhausted, sick, and with an injured back, my Old Soul asked me in earnest, “Mommy, when are you going to stop working at this job?”
I had optimistically started back to work one month after My Beautiful Boys started their first round of kindergarten, and my Old Soul was starting fourth grade, in the throes of being diagnosed with Attention Deficit Disorder (no “H”). In 9 months of K1 instruction, The Boys learned only 3 letters. In between pulling all-nighters for work, I struggled to educate their educators on the most effective, research-based techniques for teaching my children with Down syndrome. Obviously, I failed them and, in turn, they failed My Boys.
Meanwhile, the Old Soul was suffering abusive teaching techniques meant to encourage her to move faster and attend better. I learned of this when her peers told their parents of the abusive treatment, and the parents told me. My Old Soul confirmed the abuse saying she didn’t tell me because she thought it was her own fault for moving too slowly! Oy, the guilt! I was too busy working to ferret out what was going on.
Last summer, I decided to take a hiatus from our unsuccessful liaison with the school. I purchased the amazing iPad1 for The Boys (paid for with my earnings), downloaded a handful of inexpensive ($0.99 to $5 apiece) educational apps and spent 30 minutes, twice daily (not religiously) working with The Boys on academics and fitting the same lessons into our regular old summer-time shenanigans. In addition, I focused my summer-time advocacy efforts on educating the people ABOVE their educators… with great success. (My Partners in Policymaking certification taught me never to assume that superiors know what’s going on in the trenches! Educate and raise awareness at all levels!) At the start of our second go-around in Kindergarten (K2), and at my urging, our new Assistant Superintendent of Special Education brought in the expert in educating children with Down syndrome — whose research I shared with The Boys’ K1 educators to no avail — to help educate the educators. Fast forward, nearly through K2, and The Boys are reading more than 40 sight words and learning new words daily. (These are NOT your typical kindergarten sight words like “a” and “the” as those have no concrete-visual meaning, but nouns and verbs with concrete associations and real, content-based meaning to make The Boys immediately successful and foster their reading comprehension as well).
And, on behalf of my Old Soul, I also managed — post-abuse — to get a 504 approved. As a result of the 504 modifications and accommodations put in place, she is actually “not minding school so much” in the fifth grade.
Now, imagine where we might be if I’d actually been paying attention and had the time to work regularly with and on behalf of my children! My daughter might not have had that horrible bullying experience and My Boys might be reading at the school down the block, in the first grade instead of repeating kindergarten.
While looking back at shoulda’s and coulda’s doesn’t help and rarely fills my happiness fountain, hindsight certainly does teach a powerful lesson when heeded.
Now, some of you may be thinking I shouldn’t blame myself for last year’s failures. But, I do — at least partially — because I was preoccupied with work when I should have been attending to my children, to what the school wasn’t doing for them and what I wasn’t doing with or for them… Not enough homework or advocating on their behalf. Others of you are nodding your heads in frustrated surrender… Sadly, too many of us know the work-versus-kids struggle and the educate-the-educators struggle all too well. Right now, I’m picturing a bevy of mothers propped in front of their laptops/iPads/smart phones collectively nodding in acknowledgement of life as we Moms of kids with special needs know it. All those minimalist and zen bloggers be damned… Many of us are inextricably tied to the rat race, contributing what we can to help keep the roof over our children’s heads while advocating diligently to foster the progressive changes that should have been implemented years ago….
Systems — especially school systems, I find — change slowly. It takes a loud and educated mouth backed by sound logic, research-based proof, and extraordinarily persistent advocacy to take even the smallest baby steps toward changing the status quo. Like the laws of physics, the powers that be will stay their course until an alternative force — a mother who is power parenting every waking moment that she’s not working — advocates for the change that should have been implemented years ago… if everyone was doing the right thing, following the letter of the law (see what ADA and IDEA actually recommend), and adhering to research-based best practices. If there’s any grease to be squeezed into the tight budgets everyone is suffering these days, the squeaky wheel still gets it.
The whole process is antiquated and unacceptable! But, sadly, it is what it is!
Historically, change in the societal treatment and education of people with special needs has come about as a function of the advocacy efforts of the parents and loved ones of children with special needs, and through self advocates. This is the path to positive change… and I’m on it!
Does anyone remember the movie Network with the mantra: “I’m mad as hell and I not gonna take it anymore!”
Well, I do. I am. And, I’m not gonna take it anymore either!
There’s another working stiff out there willing and able to fill my overworked and underpaid shoes. And, if they’re lucky, they won’t have the conflicting priorities that I do. After my 20-month experiment in “doing it all” I’ve decided that the happiness, education, independence, acceptance and overall well-being of My Beautiful Children MUST come first… which means the advocacy to ensure all these things MUST come second… Before my job (and before blogging)! Since this is a mindset that is not always valued by employers….