Category Archives: 1 year

Encouragement

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 isurvival business as a special needs parent is hard stuffnto 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.

Happy One Year Placement Anniversary David

Ironically, the day after we receive notice of denial of coverage of services for our son, is the anniversary of his placement at the current facility.  It has been one year since we placed David in a facility 500 miles from home. Today, I am struggling with the stress of not knowing where we are… Continue Reading

It’s not our fault.

Most of my readers know me from facebook.  I am in a number of groups there, and while I would love to list them all here, it would break some aspects of confidentiality for me to do so. What I see most often in the groups that I am a part of is:  “part of… Continue Reading

update – positive news

Staff called tonight. David was in a good place to talk to me tonight.  When he is manic, it just isn’t a good idea.   David addressed his concerns. Doesn’t want to be there for another 6 months to a year. Thinks that he is being lied to. Doesn’t understand why we aren’t coming out… Continue Reading

Pass day 2.

Well, pass number 2 is in the books.  What can I say? Another success. Since David has school and therapy during the day, I spent the day shopping for clothes for him.  What 13 year old boy doesn’t need new pants on a regular basis.  Although at 4’11” and 79 pounds, it will be a… Continue Reading

upcoming visit to see our son for Christmas

Today, I leave for the community where our son is in a residential facility. It is 500 miles each way.  10 hours by bus.  When you have an auto-immune illness the trip takes twice as long. Frequent breaks are needed.  Lots of rest periods.  If I drive, I take it in two days with a… Continue Reading

>1 year — a look back

>It has been a year since I started this blog and its corresponding facebook group. So much has happened. Little did I know that M’s initial attack on his teacher would develop into 2 further attacks, 3 hospitalizations, probation, and a placement in a residential facility.  As a result we are exploring our legal options… Continue Reading