Category Archives: Autism

Articles related to Autism and it’s many facets can be found here.

MRI, EEG, no communication

Dear readers…

Last month you may remember reading about David having a seizure.  The psychiatrist put it down to his medication.  As a result of my demands, they sent him to a neuro-psychiatrist.  The neuropsych doctor ordered an EEG and a MRI.

Staff was instructed to keep parents informed about the testing dates so that they could be there to offer support to David.

Today, I received a call from a lady who identified herself as a nurse.  Said that she had taken David to his MRI and now they were waiting on the EEG appointment.  Claimed that she understood why I wasn’t there because of the icy roads and blowing snow that we experience here in the north country.   I asked her what tests she was talking about.  We were never notified of any tests.  She asked me if I wanted to speak with David.

David indicated that he had a stomach ache most of the night because he had been thinking about his test.  Which tells me that someone knew about his tests yesterday.

I notified the staff that I was displeased with the lack of communication.  Again.  This isn’t the first time we have complained about communication issues with the facility where David lives. In all communication with the staff, I try to use email, as it allows me to keep a record.

I received the following in part reply from a staffer.

===============

I’m not always kept in the loop on medical appointments.   If I did get an email regarding the appointment, I missed it and apologize; however I  looked back at my emails and couldn’t find anything.   I guess, I’m not sure why she would have expected you to be there if they didn’t notify you or send me an email.  Either way I’m sorry that you weren’t informed of the appointment.

================

Apology accepted.

I understand communication can be an issue, however… apologizing every time there is a communication issue doesn’t negate the fact that communication needs to occur.  It isn’t like we are communicating via “Pony Express” or a telegraph using Morse Code.

I wonder if they will remember to share the results of the tests with us.

 

Mental Illness and magic

So it seems like the residence where David is has this belief that after 1 year his issues should go away.

If only mental illness worked that way.

You know how it is.. on day 364, mental illness is still raging.  on day 365, it is magically gone.

yeah, that’s the ticket.

Got an email from our staff today.  They don’t know from hour to hour what David’s mood and behavior are going to be.

Where have they been for the last 14 months?  Has David not been in their care?  We told them this when we filled out the placement application.  Every month at our staffing we told them.

When he becomes Manic, we tell them you need to update his meds.  You need to change his meds.  If he is displaying

Rethink Mental Illness

manic behaviors, his meds aren’t working. Every MONTH.

David was born addicted to a lot of drugs.  As a result his body metabolizes them quickly and the medications lost their effectiveness over time.  We told them this when David moved in.  We have told them this every month or two since David moved in.  It still seems like they don’t understand.

Christmas is coming.  It is our sincere hope that David stay in his current placement through Christmas.

Oh, one other thing the email mentioned.  David seems to have some anxiety.

Gee, I wonder why?  He is afraid no one wants him and he doesn’t want to move.  Hello!

I close with this thought.

If the current placement can’t handle him with a full complement of staff, what makes them think it is remotely safe for us to bring him home for a couple of days before we take him to the new facility?  How is that a good idea?

I can’t turn my home into a psychiatric facility for a couple of days.  I can’t bring a bunch of strangers into my home for a couple of days to support David.

Why?

Well outside of the financial aspects of such a proposition, I can’t do that to our other kids.  How would that be fair to them?

When you have a child with severe mental illness, you have to juggle their needs, with the needs of the family.

Are their needs any less important?

No.

Are David’s needs less important?

No.

So we juggle.  It is a fact of life.  Will David ever return home?

I would love it.  It is ok to have dreams.

Isn’t it?

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A letter to my son. David.

David,

As I write this I am faced with the reality that you are being moved further from our home.  From your family.

I wish that things could be different.

David, you have a multifaceted mental illness.  As a result of this, we do not feel that it is safe for you to live at home.  It isn’t that we don’t love you or want you.

We need for you to be safe from harm.  We need for others to be safe from harm.  It has been difficult to make the decisions to place you in residential psychiatric care.  We took you in.  We adopted you into our home and our hearts.

I could never be prouder than I am of you, and all that you have accomplished in your short life.

I wish that I could undo the life you had before you were born.  Undo the hardships that it has caused in your life.  In the end though, those hardships make you who you are.  I can’t take that away from you.  It is as much a part of your personality as my health conditions are a part of mine.

— A little story —

A long time ago there was a young man who was troubled by the life he was leading.  A good friend told him he had two options.  Option one led to a good life, a family and home.  Option two led to a hard life, likely prison time and other difficulties.  The young man chose Option one.  Met his bride and was married, a few children later, they had a family.  And in time, he came to know and love a young man named David.  His family adopted David into their home.

—–

So I give you two options David.

Option One leads to a good life.  Possibly one at home with your family.  Option One leads to an awareness of yourself and your conditions.  It will allow you to live with and manage your mental health in a positive manner.   Option One will be a lot of work and it won’t be easy.  I have faith that you can do it successfully.

Option Two.  Well, I imagine that Option Two can lead to a life of heartache. Option Two could lead to long term isolation in a clinical facility, or worse yet, a prison.  Option two will be a difficult life for you.

—

In the end, no one can make the choice for you.  The decision is yours, my son.  I can find people to help you develop the tools to live successfully with mental illness.  However, I can’t force you to accept the help and lessons that they will impart on you.

I know at twelve this seems like the end of your world.  I may not have experienced the mental illness part of your world, but I have been where you are.  I pray that you make a positive decision.

Regardless of your decision, you will always have a home where ever we live. You will always have a place in our heart.

You will always be our son.

We do this because we love you.   I pray that you understand some day.

Even though you are far away from home, we will still see you. You are still very important to us.

Love,

Dad.

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