Over the years, I’ve heard wonderful stories from other parents about their child’s caregivers. I learn that these other humans are kind, compassionate, and able to get the child to do things no one else thought possible. I love to hear about those victories and those kinds of stories. Unfortunately, other caregiver stories with not so happy endings have been shared by parents, too. Those jaw-dropping accounts are shocking. They are few and far between, thankfully, but even so, they can quickly suck the wind right out of me when I hear them.
Some of those incidents have made the news. Other times, the person or the facts about the abuse they’ve inflicted gets tucked away. Not until that person strikes again do details about their past come out. Withholding that information serves no one, especially the non-verbal severely affect child with autism. I shed tears when I learn that a child has been harmed – either emotionally or physically – at the hands of another. When it’s an adult who’s belittled, abused, or caused serious injury to a child with a disability, my blood boils. And when it’s my child who’s been mistreated, you better believe I’ll make some noise about it.
It recently came to my attention that an individual who’d been working with my child needed to go. On paper, they were a perfect candidate for us. In person, it was a different story. Ronan got hurt. It wasn’t physical, thank God, but damage was done. That hasn’t happened often, but when it has, it’s made it very hard for me to trust people again.
I will sometimes say, if Ronan’s happy then I’m happy. Lately, Ronan had become increasingly unhappy, especially - and only – after some therapy. He wasn’t the only one who’d grown increasingly unhappy. I’d been getting a gut feeling that something was off. When I would drive away after Ronan’s session had started, the pit-in-my-stomach feeling lingered. I knew something had to give.
Changes had been made, but Ronan’s needs continued to be overlooked and he was starting to get increasingly upset. I’ve promised to care for my children, to love them, to teach them, and to protect them. Protecting them, especially Ronan, has the biggest challenge. I am his eyes. I am his ears. I am his voice. He couldn’t tell me, ‘Mom, something’s not right. Can you please make it better?’, but his behavior sure did. Ronan took out his frustrations, and no doubt, lost a little faith in me after his desperate attempts to communicate his dismay during therapy sessions. By the time I was clued in, it was too late. The situation was beyond repair.
A program we’d worked hard to create was slowly being destroyed by someone I’d trusted. Having to address that problem and the person who’d caused the issue made me livid. While this person gets to quietly exit our lives, I was forced to deal with the fallout. Holding onto hope that we can move past the interruption and the pain, the burden I carry feels a tad heavier now. It’s a terrible weight to bear, but if not me, then whom? Certainly not Ronan! He’s dealt with enough already.
With Ronan’s needs as great as they are, though, I do still have to rely on others for assistance. Their experiences, their referrals, and their qualifications are necessary. They can easily make the process smoother. But if they don’t truly want to help, or if they are only here for their gain, their assistance will be a detriment instead of a benefit.
I am rendered speechless when I’m forced to deal with the ineptitude of an adult. When that adult has all the makings of being a perfect, credentialed professional but who can’t see the amazing and incredible fragile human being placed in their care, I am reduced to a puddle on the floor. Eventually, I pick myself up and begin to move forward. I have to. As much as I’d like to do everything on my own, I know that I cannot.
When I next reach outside of my circle for help, I hope that the person I’ve asked to assist us is kind, loving, and ready to assist. That person may come in the form of a therapist, a doctor, a nurse, or an administrator. Some truly are willing participants and play their role very well. Others not so much. When those bad apples come around, as we recently experienced, one may begin to understand why parents like me have become somewhat jaded. We trusted professionals. We depended on them completely. We believed in them wholeheartedly. Some professions are amazing, and we want to replicate them, their knowledge, and their programs. But the bad ones really do ruin it for everyone else.
I pray that we can replace the individual we let go with someone who will be able to look past Ronan’s disability and see the amazing child that he is. I’m sure we will find an adequate replacement, but no matter who steps into that role my guard is already up. Who could blame me? Recovering from disappointment isn’t easy. Nor is trusting strangers.
Oftentimes, we hear the phrase, “It takes a village to raise a child or to train a child.” Some people, due to their unique circumstances, must rely on others to help them raise their child. They readily welcome the village and those within it. That concept works for them. It could work for others, too. It can, as long as it’s not the village idiot who’s been hired or assigned to take care of your non-verbal, severely affected child.
Cathy Jameson is a Contributing Editor for Age of Autism.