Category Archives: Mental Health – Child

Mental health articles relating to a condition your child might have can be found here.

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

honesty doesnt make us bad parentsIronically, 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 at with my youngest son’s mental health treatment.  The denial of continued care is weighing heavily on my mind, and it will be Tuesday before I can file any appeals.

He deserves better than this from the system that is responsible in part for his care.  When we adopted him, he was ordered by the court to have complete state sponsored medical coverage until he turns 18.  This is Medicaid.

It isn’t safe for anyone for him to come home.  Even the staff that works with him day to day has said that.  A month ago, he was self-harming.  Cutting, and after they took the sharps away from him, he inserted his fingers into the wound on his knee and started pulling on it to make the wound larger.  Initially, he wouldn’t have needed stitches. The manic behaviours that he displays, the ceaseless energy – coupled with what changing facilities would do to his treatment plan… now is not the time for change.

As a father, I want to fix it and make it better.  I can’t do that, and while it isn’t my fault that the system is broken, I feel like a failure for not providing direct care for him.

Yesterday marks one year since he began his placement in the current facility.  The next closest facility that could take him if necessary is 700 miles away from our home, in Denver.  Like I said in a previous post, how does moving him further from family help him?

I am not looking for a debate about the ACA. I know what it is and isn’t doing for the people I know. It works for some, and doesn’t work for others.

About a month ago, I wrote a post “It’s not our fault.”  I guess I should go and read that one again.

I have this book that I am working through.  “Getting Your Joy Back” – I am going to read through parts of it again.  Need to find my joy.  And know in my heart that we are doing everything that we can for him.

a new year, more medicaid frustration

So what else is new?  right?

DavidReceived this notice from the facility where our son resides.

I am sure you will be receiving a hard copy in the mail, but I wanted to notify you that as of 1/10/2015, David’s  Medicaid has denied coverage for residential care and we were notified of this yesterday. (See attached letter) Facility is currently in the process of appealing this decision. I will keep you notified of the results of the appeal process which will be submitted early next week.

 

 

They enclosed a copy of the notice that they received from the determination company that is under contract to our state Medicaid.

The rationale for this decision is:  David is a 13 year old boy who is diagnosed with Bipolar disorder and pervasive development disorder.  He was in a residential setting in North Dakota for over a year and transferred to the current PRTF where he has been for another year.  He appears to be compliant with staff expectations for awhile, then acts out occasionally, suggesting he has reached maximum benefit in this current PRTF setting.  As reported in November 2014, his social worker indicated that visits with dad had gone well, and that David was on track to be discharged in January 2015.

Continued stay is denied. Placement issues cannot justify continued stay.  Consideration may be given to returning David to his family and home where he can receive ongoing therapy including PCIT type family therapy.  If the facility would like to request a desk reconsideration….

First, how does a couple of hour long visits constitute “visits had gone well”?  He has had zero home visits.  Any visits that we have had, include him being returned to the residence within 3 hours.  At no time has a visit gone over a 4 hour period.  If his behaviour is such that he is harming himself, and prone to outbursts of violent behaviours, how are we supposed to maintain him at home?  We live in a small town.  45 minutes from any where.  Are we supposed to move to a larger community so that he can receive the PCIT type family therapy?  What in the heck is PCIT type family therapy?

He was moved to his current facility because the last facility was afraid something like this would happen.  That services would be denied.

If services are denied, that means moving him again, and starting over again with new therapists, new treatment goals, new psychiatric teams, and likely new diagnoses.  Not to mention that the next closest facility is 700 miles away rather than the 500 miles from home that his current facility is.  How does that help our son?  How do we maintain a family connection across such a great distance?

While I would love to bring him home, behaviours and past experience tell us that it isn’t a good idea.  Not only for David, but for our other children.  If I bring him home, and we go back to the same old David, what happens then?  He is doing well in the current placement in part because of the highly structured environment.  Something that can not be recreated in our home.

Lord help us, we want what is best for David, and all of our children.  How can someone who doesn’t know him, and is reading what may at best be deemed incomplete progress notes, determine what is appropriate for him?

And for the record, the social worker never told us anything about discharging David this month.  That is completely new to us.