In Part 7 of the series, “Every Family Has a Story,” Darla Johnson reminds us why the effort in standing up for your kids is always worth it.
Have you ever taken part in a game or an activity in which at least one of your senses was artificially impaired for a time and you had to depend on others for assistance? If you’ve ever played “Pin the Tail on the Donkey” then you have an idea of what it’s like to wander aimlessly when trying to accomplish a task.
Some workplaces take employees through a sensitivity training period where they “impair” the employee and make them “dependent” on a fellow employee for assistance. I think this is a good practice and I’d love for this to be a mandatory course in schools every so often, so that people can understand a little better what it’s like to not be completely independent and self-sufficient.
If you care for a child, other relative, close friend or anyone else with a disability of some kind, then you probably have an idea of what obstacles that person faces. It probably makes you more sensitive to their needs. It may propel you a step further into advocating for that person, which may be out of your original comfort zone.
When I was a lot younger, I was a shy introvert. I didn’t like confrontation and I rarely spoke my mind in a public setting. With age and through a series of circumstances out of my control, all of that has changed. I’m definitely not shy, although in my heart, I’m still an introvert that has to wear an extrovert personality much of the time. I still don’t necessarily enjoy confrontation, but I don’t back down from it now either. Once I learned that if you stand up to a bully or a loud-mouthed person even one time, they tend to stand down (maybe from sheer surprise at your response!), I was energized by that power. And several years later I now have no trouble speaking my mind in public.
I actually like these changes in my demeanor. I owe a lot of that metamorphosis to having two children with disabilities. When the first one was born over 18 years ago, I was still shy and avoided confrontation. But when she was diagnosed with a rare eye disorder that left her with low vision, I realized I had to be her advocate. That meant I was going to have to get over being a mouse. That meant I was going to have to step out of my comfort zone. Way out of my comfort zone.
And I did, slowly but surely I was able to speak up for her when she was too young to do so. Then later when she was old enough to advocate some for herself, I realized she had inherited my quiet, introverted personality (not her dad’s extroverted personality) and I then had to work hard to also teach her to self-advocate. Of course, I had lots of help from her experts that worked with her at school. But I had to lead by example.
We moved from one town to another when our oldest daughter was about to being the fourth grade. She didn’t necessarily jive with her fourth-grade public school teacher, plus she was upset about the whole moving ordeal (who wouldn’t be?), so it just didn’t get off on the right foot. I found out her homeroom teacher wasn’t really cooperating with the accommodations she needed in the classroom due to her vision problems.
That’s when I found out about IEPs (Individual Education Program) in the school setting. We worked quickly to get one in place for her; then her teacher had to comply with the accommodations. It wasn’t easy to sit across the table from her teacher and explain (again) that our daughter really did need preferential seating, low glare on the white board, good contrast in every kind of media she’d be expected to use, and large enough print to read her materials. But it was necessary, and it gave me a sense of control. It was the beginning of my ability to have a formal say-so in her education.
Fast-forward seven years, and we added a little boy to our family, who had the same visual impairment as his oldest sister, and was diagnosed with autism spectrum disorder just after turning three years of age. I had experience with the vision impairment, but I had to learn how autism affected him specifically and then advocate for him appropriately.
As I’ve had to stand up for my children’s rights and secure for them the accommodations they needed, I’ve gained confidence that I can be successful in those endeavors. In fact, as of now, I’ve really not been turned down for anything I’ve requested for my children, even at school. Maybe it’s because I don’t ask for the moon; I only request what they actually need. Maybe it’s my and my husband’s approach; the old adage that you get more flies with honey than with vinegar is still true. Maybe it’s our tight-knit community; it truly is a special little town in rural America. Perhaps it’s all of these factors or others.
What can be your take away from my ramblings here?
First, learn all you can about the special needs diagnosis you’re dealing with. Then find out how it specifically affects the one you’re close to or caring for.
Next, ask for reasonable accommodations for that condition. Ask more than once if necessary, but remember to use your good manners.
Lastly, genuinely offer gratitude to those who provide you with assistance, especially to those who go out of their way to help. An awful lot of us in service positions (I’m a registered nurse) do a mind-boggling amount of work behind the scenes to “pull strings” or take on work pro bono in order to help others. A sincere “thank you” means the world to someone whose job requires them to give of themselves constantly.
You may have to psyche yourself up to go into a meeting, you may need to bring alongside some experts, or you may need to tap into someone else’s wealth of experience or knowledge. But whatever you need to do in order to advocate for someone who needs it, the effort is always worth the positive end results.
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