By Cathy Jameson
How well do you know the people in the autism community? How much do you think they do for their child? I invite you to come take a peek at what might be going on just a few doors down from your own:
-A parent is suspected for Munchausen by proxy syndrome by a medical provider because the parent wishes to explore more natural, non-pharmaceutical options for their child’s treatment for autism.
-A parent is cyber bullied by neighbors when their disabled child’s needs inconvenience the typical neighbor children’s playtime at the local play ground. Belittling emails are passed back and forth behind the special needs parent’s back as they make fun of her son’s disabilities. The parent is desperate to find friends for herself because it’s become increasingly difficult to maintain the typical ones she had after her son was diagnosed with autism.
-A parent is awoken by knocking on the door at 7am by a police officer. The school has accused the parents of keeping their child home with unexcused absences. To no avail the parent has repeatedly requested that the child’s school be made safe after discovering that the school staff practice the use of restraint and seclusion (R & S) as means of first-line of defense, I mean discipline. Instead of utilizing positive behavior supports the school refuses to work with the parents. Parents in turn fear for their child’s safety and keep the child home.
-A parent requests further investigation and support for her child with who was suspended for a meltdown that escalated when the child’s typical supports were denied. Instead of calling the parent during the two-hour incident, the police were summoned. The child in question is five. Parent’s input was not considered relevant and ignored. School states in a report after the incident that, “We can handle everything.” Parent fears what “handle” really means.
-A single parent is scorned for standing up for her child’s right to a safe school environment after discovering teachers are abusing and neglecting the child in the classroom.
-A parent becomes an outcast to extended family members for following a natural, biomedical treatment plan to ease some of the symptoms autism plays on his child’s health care needs. Traditional pharmaceuticals have only exacerbated the symptoms causing serious side effects and regression with behaviors. Extended family thinks the parent is just looking for attention. They also think a spanking will cure all of the child’s problems.
-A parent picks up a second job to pay for therapy that insurance won’t cover. Marital strain is felt as one parent is left to tend to the affected child, the typical children and all of the household needs. The working parent starts to resent the excessive hours being clocked for a measly paycheck. Tension is the new normal.
-A parent moves their family across the country in the hopes of seeking better health from a team of professionals known to offer top-notch care. The parent discovers that the health care providers are too busy researching everything but the actual child standing in front of them.
-A parent hides their child’s former autism diagnosis after years of recovery efforts. Recovery is achieved but the stigma that came with the initial diagnosis is too much to bear. They choose to only go forward, to seek future opportunities and to quietly leave the past behind them.
-A parent takes on a school district after being denied federally mandated services. Their child is targeted by teachers as the parent is labeled a trouble maker asking too many questions.
-A parent is kicked out of a pediatrician’s office for delaying vaccines after the child had a reaction to vaccines previously received. Instead of working with the parent to create a better plan for that child’s health needs the staff refuse to treat the child altogether.
Those stories are at some level horrifying and were not headlines criss-crossing the nation’s newspapers. Each of those situations has happened to someone I know. It’s quite a list. And, easily I could add to it. Maybe it’s the company I keep—I have more friends now who are parents of special needs children than of typical children.
At the hands of another person, a human being took common sense out of the equation when working with the special needs children. These people, some of them highly educated and esteemed by their community, had the potential to do the right thing. They chose to throw out every bit of common sense as well as a lot of compassion. They could have offered ideas, assistance and opportunities. They chose instead to react with appalling responses and actions.
Of course two sides to every story must be told, and giving the other side a chance would be ideal. But, I’ve also been the character in similar situations and in doing so have witnessed firsthand how truly pathetic some people conduct themselves. I’ve dealt with irrational people offering illogical responses. They and their answers got me nowhere. I was forced to learn more about the systems offering programs to assist me and my child. I desperately tried to fix what I could for Ronan. I learned you can’t fix a broken system. That discovery taught me how to be on my guard, to watch my back and to speak out before someone else gets hurt.
The harsh reality parents face while caring for their children shouldn’t be one full of fear. But, it is. Quite quickly a family’s next moments can be filled with disrespect, terror and evil. Imagine the shock, tears, rage and disbelief from each story I shared above. Then, imagine what the child suffered: being neglected, abused, ignored, humiliated, accused and forgotten. You’d think if that the people who chose to work in the special needs field actually want to be there! They’ve been educated, learned specialized instruction, logged hours of research while experiencing hands-on skills. They’re qualified to guide, teach, lead and care for people with special needs. For some reason though it is easier for them to forget do to the right thing and instead do quite the opposite. Families now face added stress, emotional trauma and pressure to comply with people who are in control but who have no vested interest in their child.
Entire families are now victims. These people have been dragged through unjust judgments, outright lies, egotistical attitudes, legal cover ups and uncalled for personal attacks. How do they promise to take one more step when sometimes they can barely inch past the threshold of the front door? It’s not just out of love for a child that is the drive to get up and out again. It includes honesty, justice and loyalty and doing whatever it takes to protect themselves from further injustices. I know this because that parent who was arrested for truancy would rather go to jail than allow their child back into a dangerous classroom. That Mom would walk on her knees through broken glass away from the pediatrician who thinks he’s going to put another vaccine into her child’s body. A fighting spirit is one many have had to adopt because of the situations they’ve experienced. The children and our community deserve no less.
Some parents will quietly walk away from their situations and make life better without drawing attention to it. Others will go to the local media demanding that barbaric practices placed in our children’s environment be investigated and removed. It shouldn’t take these kinds of measures though because all one has to do is stop, think and do what’s right. It really shouldn’t be all that hard to make that happen. Sure laws are written to protect our children. Contracts are written guaranteeing safe practices while providing highly qualified who do no harm. But, when egos, attitudes and the bottom line is a budget too small to protect the life of someone needing great care, the promises made on paper aren’t worth a thing.
Cathy Jameson is a Contributing Editor for Age of Autism.