Parents with children with severe special needs commonly mirror the emotional turmoil of soldiers with PTSD, or Post Traumatic Stress Disorder, a term used to replace battle-hardened, 'shell-shocked' men coming from war.
Just yesterday I was in a particular office with four mothers, and it being Puerto Rico, the conversation was loud and inclusive. By no means would I attempt to enter a conversation as a stranger on the U.S. mainland, but the culture is different here. People are warm, gregarious and a bit nosy... kind of like one big family...kind of..
So these Moms are talking about their children with autism, and one has tears welling-up in her eyes, the other is 'unloading' her thoughts and feelings after so many years of battling and advocating for her child, and another Mom (not all at the same time) is telling me and everyone in earshot how frustrating it is that just about every year her child has to get re-acquainted with a new set of Special Educators, a new set of assistants, and a new timeline for everyone to be back up to speed. The worst thing of all is that her child has to re-establish rapport with new people. This makes for disjointed progress, if at all.
If you want to talk about throwing monkey wrenches... here is one. Children with all kinds of autism commonly have mental flexibility executive function skill deficit. That implies that transitioning from a thought, feeling, or activity is cumbersome for them. When the people helping you excel leave and you get new ones (or have to wait a long, long time for new replacements) the whole daily routine gets out of whack. Parents, especially Mom's, have to mop up the mess in routine, shore up the short-comings of Special Education services as best they can and simultaneously advocate (that implies fight) for appropriate services.
As if a Mother's job was not already overburdened, helping attain services, not even the right kind of services, just services, is like fighting at the Alamo after the munitions have dried up. I can almost here Davy Croquette telling his men to fix their bayonets.
Truth be told, no one is advocating for physical violence here, but I AM illustrating that for these parents relying on .gov services, it is one wave after another of obstacles, setbacks, difficulties, and dissapointment. This is especially true when a local government is having a perpetual fiscal crisis.
Not all parents with children on the autism spectrum are 'shell-shocked' of course. Parents with greater financial means can attain a variety of laser-focused services that manifest great progress in short time, but even for them it is hard. All parents want the best for their kids and it can be very taxing to advocate and constantly allocate physical, mental, emotional, and monetary resources on a daily basis. It is exhausting.
Can we leave it all up to Mom's and Dad's to mop up the mess left by the causes of autism? No. They need all kinds of help, like health insurance companies not hassling them every time for reimbursement. A great way to help parents with any child with special needs, not just autism, is for private related-service professionals to more voiceferously market themselves in communities. Creating a competition for services creates a menu of options for families, helps drive affordable rates, and brings in laser-focused services to each home.
In this paradigm, the parents become the bosses, and the system completely becomes performance-based! This does not end a disability like autism, but it level's the playing field for parents, putting them in the drivers seat and calling the shots.
No need to fix your bayonets, parents can outflank many common pitfalls by going straight to private industry, just like Coach Bill.
I work with parents in Connecticut, New York, Martha's Vineyard and Puerto Rico, and though I have a standard rate, my Puerto Rico rates are significantly lower. Stateside I am covered by a few, not all, but a few major health insurance companies, and am focused on becoming part of various Puerto Rico health insurance coverage networks.
Currently, aside from fomenting my private practice locally, I meet daily with multiple schools, organizations, and governmental offices pitching two proposals to reach out to the poorest of the poor living at or near the poverty rate and on welfare. One of my proposals cranks out effective students and effective entrepreneurs in the context of executive function skill and hemispheric development, while the other is focused on developing the executive function skills and hemispheric balancing with children and young adults with autism using a framework of planning, prioritizing and following through on their goals, desires, and parent wants. Both proposals espouse and practice real professional job skills needed to excel, regardless of one's neurological health.
CoachBill.US travels on a monthly basis to the states, and leads Life Skills Corp. which is also a credentialed provider for the Department of Child and Family Services across Connecticut.
Want to start an Escuela of Executive Function Skills & Entrepreneurship? You got space, chairs, and tables? Let's talk on how to help the community and even your back pocket.
Email me via CoachBill.US