Raising any child requires vigilance, but raising a special needs child takes that vigilance to an entirely new level.
Schools, doctors, businesses, churches, the government, all approach special needs children from different angles, based upon their differing assumptions, and while all will claim to have the best interests of your child at heart, the uncomfortable truth is that their own interests come first.
You see, society in general has gone through a major shift in acknowledging and dealing with special needs individuals over the last fifty or so years in particular.
Once upon a time, such individuals were quietly made to disappear into institutions where many, perceived to be something less than fully human, received inhumane treatment and were subjected to experimentation. Maybe they were visited by family members; in many instances, they were simply forgotten, the institution relieving families of the embarrassment of having to publicly acknowledge the imperfection in their bloodline.
Things have improved greatly since then, but accommodating individuals with special needs continues to be seen as a burden by many of society's institutions.
For businesses and government offices, this entails costly changes to facilities and training employees to handle situations involving special needs individuals appropriately, with dignity.
For schools, this entails the development of I.E.P.s (Individualized Education Plans) for each special needs student, specialized facilities, and additional support personnel.
For churches, this means re-thinking their theology regarding the origin of disability (there will be a future post addressing this particular issue), as well as determining how to best minister to these individuals and their families.
For doctors, it means realizing and acknowledging that they DON'T have all the answers. It means knowing what they don't know, and taking the time to rectify those deficiencies in their medical knowledge.
Some individual entities truly make an effort to understand and accommodate special needs individuals.
And then there are the others.
I was raised to be diplomatic, so this lesson has come quite hard for me. I tend to give people a lot of chances, try to reason with them. In most instances, that approach has served me well.
But when it doesn't, there is only one thing you can do.
Go in to that meeting loaded for bear.
I have had more than my share of meetings during which things got very heated. As a parent advocating for my child, it is my responsibility - my obligation - to hold the feet of teachers, doctors, businesses, etc., to the fire.
One teacher refused to honor the terms of our son's I.E.P (a legally-binding document governing the education of one's special needs child); after repeated meetings with her, we began pursuing appeals further up the chain. She was eventually let go because she refused to abide by the terms of the I.E.P.
In another instance, while pursuing alternative medical treatments for RJ's autism, our pediatrician put us on notice that she, as an M.D., disagreed with the alternative treatments we were researching (the other doctor was a D.O.). She advised us that, if we continued to pursue alternative treatments, she would no longer care for our son. Now, we had kept her apprised of everything we had done, including providing her with comprehensive notes. I reminded her that we have a right to pursue second opinions and alternative treatments. "Yes, that's true. But the moment you choose to act on them, I can no longer be part of your son's treatment." We had a sharp discussion regarding her approach to treating autism, during which she informed me that, "I am comfortable that I am up on autism in the traditional sense." I replied, "That's the problem; you have limited yourself to traditional thinking. If you can't medicate it or operate on it, your response is, 'there is no cure; go home and deal with it.' We need a doctor who can think outside the box, because I refuse to believe there is no cure for autism." We left her practice and found a doctor with whom we can work.
Businesses are not exempt, either. The Civil Rights Act, the federal Americans with Disabilities Act (ADA) and most state laws very clearly delineate how businesses must accommodate persons with disabilities, yet problems still exist.
Several years ago, we visited a Michigan zoo for RJ's birthday. RJ has an autism assistance dog, a service dog specially trained to keep him safe by insuring that he doesn't bolt when out in public. The ADA and Michigan law very clearly state than a service dog may not be denied entry to any business, yet the gate employee would not allow us in with our service dog - despite being shown a copy of the law. Advocacy in this instance took the form of contacting legislators, local news outlets and the threat of legal action - a step that I take very seriously and use in the rarest of situations. Within a few days of the incident, the zoo responded, apologizing for the incident, retraining their staff, and inviting us back for a visit that included behind the scenes access and an opportunity for RJ to feed their rhinos.
While most incidents requiring advocacy for our son have been accomplished amicably, that hasn't always been the case. Advocating for your special needs child isn't always a pleasant experience. But you as parents are their best advocates.
I vividly remember a phone call I received from one of our friends, the mother of an autistic child. She was angry because a teacher refused to honor the I.E.P. of her son in ways that bordered on abusive. I allowed her to vent for ten or 15 minutes, at which time, emotionally drained, she said, "I just don't know what to do." I assured her that she did. She had already set up a meeting with the teacher, but she just wasn't sure how to go into the meeting. She felt that she was entering a meeting with the odds stacked against her, that it was going to be her versus several administrators and the recalcitrant teacher. I reminded her of the anger she had just expressed to me on the phone and advised her, "You need to bottle that anger, go into that meeting knowing what your son needs, and open up that bottle on them!"
You, and you alone, are the best advocate for your special needs child. Despite what the system wants you to believe, YOU know better than their so-called "experts" - most of whom have never actually raised a special needs child themselves.
Work with them.
Communicate with them regularly.
Stay on top of them.
Hold their feet to the fire.
And yes, when the situation calls for it, open that bottle on them.
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