Category Archives: acceptable practice

What is it like to live in fear?

Having never lived in a war zone, or been active in a war zone, I can’t say that our experience compares to that.

What I can say is this.

Living day to day on edge constantly because you don’t know from one minute to the next what your child is going to do, whether or not they are going to explode in anger, assault you, throw themselves at the wall, steal things, or try to kill the family pets will take a huge toll on you.  If he is angry enough to carve on himself, to then reach into that wound and make the wound larger by tearing his own flesh with his own hands, what is he capable of doing to someone else?

When a child can easily go 48 hours without sleep, it takes a toll.

When you have chronic health concerns, living like this takes a toll.

Having other children with Autism, and helping them survive living like this takes a toll.

So don’t tell me that we need a little encouragement.

What we need is to know that we are safe.  To have a reasonable expectation of safety in our home.

So poor planning and scheduling on the part of the facility has created something of an emergency for our family.  We are now in a rush to put school into place, treatment plans into place, emergency plans into place, all because someone thinks this is a good idea.  Well excuse me if I don’t feel very encouraged.  Quite frankly the thought of David coming home right now scares the ever loving shit out of me.  I fear for the safety of my family.

So I put it in God’s hands.  What happens is the result of human fallibility. Your lack of planning will either make or break David.  Your lack of planning will either bring my family back together, or it will destroy everything we have achieved.

Today, as I deal with this, and attempt to come to terms with this change in our circumstance, I have decided to reach to the book, “Get Your Joy Back“.  Maybe through it I can find the encouragement that we so desperately need.

Did you know that there is a whole chapter in this book titled “When the Pros Don’t Know (Forgiving the Professionals)“?

I am struck by this quote from page 103:

“It doesn’t feel reasonable to have to censor our parental feelings or instincts in order to be taken seriously by professionals and get our children the help they need.”

The therapists recommend certain things, supports and respite.  These are all great, fantastic things, but… don’t you think that we have done these things in the past?  Sure we don’t have a current baseline.  The kid is 500 miles from home, how do you expect us to be able to afford to drive out there, pick him up, bring him home, keep him for a pass, and then take him back?  How do we cover that expense?  We are not independently wealthy.  Sure we can put in for Medicaid reimbursement, but if Medicaid won’t approve coverage of services, what makes you think that they will cover travel expenses on top of the service cost for the time it takes to establish the baseline?

Yes, we understand that your facility has apartments where we could do home passes.  How realistic a baseline do we need to establish?  If we are to reasonably establish a guideline for how he interacts with the rest of the family, how realistic is the baseline going to be if we do the home pass in the same facility where he is placed?

Or does logic not apply?

I can’t hold my feelings in about this.  I love my son.  I would love nothing more than to bring him home and not have to work with people like you.  Well intentioned people who don’t have a single foot in our reality.  I live in a world of fear. Some say that fear is a healthy thing.  I would agree, but have you tried living in fear 24 hours a day, seven days a week?

How long before your psychiatrist accuses me of dumping my son on the system…?  If I wasn’t concerned about the safety of others, don’t you think that I would have already done that?   This isn’t about me.  This is about David.  This is about how he relates to people.  He was placed in your facility because the last facility said he need a more restrictive environment.  Now you say he is ready to come home.  I don’t understand how one year in your facility suddenly makes my son safe for home.

I strongly recommend that you talk to his primary staff.  I strongly recommend that you read his case notes from last month.  From when it took more than one staff member to restrain him.  Do that, and then we will talk, because frankly, I don’t understand this decision.

This is me trying to help my family survive.