No, it’s not “happily ever after” – let’s be real, here

As I begin gathering the team to work on our presentation at the MFOFC Building a Home Conference in September, one of the first things we will do is look at past presentations and decide where we need to update information.  Of course, my mind first goes straight to the end, where in the past we’ve talked about our son’s progress in real time; that being just a few weeks or months after his transition.  And of course, the marketing person in me wants to promote all the great stuff, to drive home the “successful” part of the transition.

But at some point that starts to feel disingenuous if we leave it there.  It’s been nearly 2 years now since Nicky transitioned, and it hasn’t all been perfect by any means.  It was a tough winter, with multiple severe head wounds and ER visits due to self-injury, significant setbacks in home visits, staff turnover and other challenges.  There was never a time where we wished we hadn’t done what we did, but many times where we felt like even with all of our collective hard work, Nicky still struggled in his environments. 

Some of our inner circle of friends and family have asked us if we thought the agencies we are working with are the best ones for Nicky (read: the best ones for someone as challenging as he is).  This is understandable, and the response we always give is one that has been well thought out, based on reality, knowledge and experience that we’ve accumulated for many years.

Parents and caregivers need to understand that things happen in every human service agency, that affect our children either personally or within their support structure.  Staff retention, recruitment of skill sets, training – all of these are common challenges that they ALL face, ALL the time.  And, there are people who will make bad decisions even with every level of training.  No agency is immune.  

It’s how an agency responds to you and to the situation that makes the agency a good one or a bad one.  I have seen terrible situations get swept under the rug, excused, blamed on the supported person, and occasionally denied altogether.  These responses are unacceptable. 

I’ve also seen providers face a problem head-on and take it to a new level, by gathering families and other stakeholders and soliciting feedback, to improve service delivery. These are the ones that shine.

In our case, the agencies that support our son have been forthright, professional, supportive and swift in the way they have handled the difficulties they have had with Nicky.  I believe that this is, in large part, because we did spend a year together planning, preparing, developing relationships and levels of trust, learning how to manage ourselves as a team.  Neither of the agencies have been taken by surprise by anything that has happened, because we all had plenty of time to prepare. That’s one of the biggest messages of our presentation wherever we go; early planning and collaboration is key! 

But going back to the theme of this post; it hasn’t all been great these last 2 years, and I think it will be important to make that clear in our future presentations.  We need to stay relevant and we need to stay real; it’s not always going to be easy, but we have committed to making things work, and we’ve worked very hard.  Right now, too think any other place might be better is to fool ourselves.  We’ve got the dream team, not because they’re perfect – because we are all in mind, body and spirit.  It doesn’t get better than that.

 

 

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About Cheryl Ryan Chan

Autism Community Thought Leader & Change Agent. Founder of a nonprofit dedicated to supporting family-powered solutions to home & life challenges for adults with autism. Social Media & Marketing consultant. Mom to a 22 year old son with autism and severe behavioral challenges. Person-Centered-Planning Facilitator, Professional Group Facilitator
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