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See Something, Say Something

Open your eyesBy Cathy Jameson

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.

Comments

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Mary Maxwell

Dear Cathy, Having lived much of my life in Australia, I now live in Alabama and am running for US Senate on August 15. Would like to hear from any Alabamians who frequent this website. Please see my campaign website www.MaxwellForSenate.com.
You know where I stand on vax, as expressed in my book "Consider the Lilies". Cathy, your writing is always uplifting. Merci.

Benedetta

It is not true that it takes a village; that is so very wrong.

An autism parent

The biggest quality for a caregiver is a certain kind of temperament. Our son is dependent on people that he is used to, and used to him. It is time and patience and love, fundamentally, though organisation is important too. People arrive on the scene and think they know it all - very often they do become good at it, but it takes time.

kws

I love to read your articles Cathy because it's so apparent that you've been there, and are there for your son. Caregivers do seem to run the gamut and we do need them. Some of the nicest people I've ever met in this world were special education teachers.

That said,
I stayed away from male caregivers since predators are almost always male.
Whenever it seemed like it was about the money, we left.
Nobody got a second chance after my sixth sense tingled.
If the results were good and I felt comfortable, we poured it on.
Mistakes through ignorance were as detrimental as intentional mistakes.
Trust your gut.

Pray Big

Peter Miles

I'm sure many of us have had the same experience. We certainly depend too much on family because it is so incredibly hard to find someone who is at least adequate and will be there for a long time. Many times we have started with someone and they have learned a lot with us only to have them find employment with another child who's much less demanding.

Stephen is also non-verbal and we have to try to interpret his feelings about the different people that come into his life. It's no easy task. We also have to become hardened to the facts, we always try to see the best in people and are much too willing to 'give it another chance', but, as you say, we need to make sure Stephen doesn't lose faith in us for making a poor decision.

However, we are also very gratified when we see the changes in people that have experienced Stephen and have seen beyond the disability and go on to better things. There were a couple of memorable women, they were farm girls enrolled in the local university Psych program. I'm not trying to demean Stephen's disability by comparing him to animals, but I think these women had an advantage from working with animals at the farm. They also had to interpret the animals feelings from their behaviors, I'm sure Temple Grandin would understand. These women, after working with Stephen and a couple of other families we put them in touch with went on to build their careers around autism.

If you need a bit of a pick-me-up there's a great book that details someone's experiences when he was broke and took a job driving a special needs school bus for a year.
https://www.amazon.ca/Precious-Cargo-Year-Driving-School/dp/0345810511

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