Tag Archives: reality autism

and then we get a phone call….

that says “your son has had a seizure, and is on the the way to the emergency room via ambulance.”

It was nearly two hours before I noticed the message on my cell phone, which tells me a number of things.

  1. They didn’t attempt all of the communications methods that we listed in the paperwork for his admission.
    • They didn’t call both home and cell phone for dad.  UPDATE  they did leave a message on our home phone.
    • They didn’t call both work and cell phone for mom.
    • They didn’t call the third party emergency contact.
  2. They didn’t email me until after I had sent a message arranging for our Sunday visit.  And by this time, it was more of an “Don’t know if you got my message or not, but David had a seizure today around 1:45…”
  3. In the end, preliminary indications are that he had an allergic reaction to the medication Welbutrin, which we didn’t know he was on. Interesting side note about medications a bit later.
  4. David was unconscious for a brief period of minutes.  He was accompanied by a staff member to go to the ER in the ambulance.  A staff member was with him at all times.

While I am upset that my child had a seizure, I am also upset at the failure of the institution to follow a protocol to ensure that parents, in this case, my wife and I, knew that an emergency situation arose that required an ambulance and a trip to the ER.  Anyone who knows me knows that I would drop what I am doing right now, and rush the 50 or 100 miles to be with my child.  Just because he is in an institution, doesn’t mean that we don’t care about him, love him, and want to be involved in his life.

In the event that I, or one of our contacts, had been notified of the seizure via telephone or even text message, I could have been in the city where he lives by the time I did receive notification.  Over an hour and 30 minutes had passed between the event and when I had received the email.  It is roughly 100 miles to the city where he lives.

In the end, David is stable, and while a bit disoriented initially, seems to be fine now, although they said he is rather subdued.

Mom is making arrangements to go see him, plus we are going to do our regular visit on Sunday.  The thing is, with a child that has severe mental illness, you have to maintain a schedule.  Us just showing up at the facility isn’t going to be good for him, we know that from experience.  On the other hand, us showing up when he was in the emergency room would have been entirely acceptable to him, plus it would have made mom and myself feel better about the whole situation.

In regards to the medication.  We had no idea he was on Welbutrin.  None. Zero.  We were in the dark.

Today, Oct. 25, 2013, we received a notice from the psychiatrist dated Oct. 7, 2013 that asked for permission to put him on it.

How seriously is my trust in these people being eroded?

Parent Teacher Conferences – A joy for David

Mom and I went to Parent Teacher Conferences at the PRTF where David lives last night.  To say that we were surprised in what we heard would be an understatement.  By all accounts, David is doing well.

Compared to last year, when he couldn’t be kept in the classroom, now, he does the work.  Not without redirects, but hey, this is a kid with severe mental illness, just keeping him in the classroom is a start.

He has a difficult time staying on task, but with a teacher that was reminiscent of Bonnie Franklin from One Day at a Time, he is making headway this year.  Even the keyboarding teacher had positive things to say about David, and he is doing very poorly in her class.

The social self.

The social self. (Photo credit: Wikipedia)

This is in stark contrast from what we hear in the monthly staffing that we attend where we go over his treatment plan.  All we hear then is how David continues to struggle.  Of course he is going to struggle.  When the maximum effective life span of any medication cycle is 90 days, we need to constantly be aware that his body metabolizes and attunes itself to meds very quickly.  This is something that we have told the staff there time, and time again.

Yet, they still want to move him to a facility where he can be more controlled, and where he has less interaction with peers.

I don’t agree with that.  Time to make my voice heard.

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Explosive Visit With David Today.

We saw David today.  The plan was a two hour visit.  We were there 20 minutes.

The argument started because David decided that he wanted to be obstinate.  I was getting the situation defused when David decided that he was done with the visit and took off down the hallway.  I had to go after him to ensure that he didn’t get into anything he wasn’t supposed to.  Once he was outside, I hollered for him to stop and talk to me.  He was about half a city block away and picking up speed.  Staff at this point was coming out of the residence.  So I told them that he was running away from us.

The Great Day of His Wrath

The Great Day of His Wrath (Photo credit: Wikipedia)

In his anger, he left behind all of his toys.  So his sister brought them out to the door by his cottage.  David erupted.  Said that she was stealing his stuff.  His sister engaged and defended herself.  You don’t go against David even if you are defending yourself.  So I stepped between them. I calmly took the toys and was going to give them to staff.  David didn’t want that.  So I set the toys on the ground, we got into our vehicle and prepared to drive away.

David was missing a ball that he had thrown across the room in anger, so he slapped the windows on the car and started yelling that we had stole it.  We explained to staff that it was in the room where our visit was.  Then we left.

The kids have decided that they aren’t sure that they want to see David for a while.  I won’t force the issue.

David is of the opinion that he is never in the wrong.  As we were leaving I told David that I would call him later.  He said “I don’t care if you never call again, I hate you.”  Which I know is just his mental illness talking.

It has been a while since we were the brunt of his anger, and I think that the rest of our kids were surprised about how scary it is.  This is why we can’t have him come home.  When he was home, it was like this everyday.

We stopped and let all of the kids calm down.  Got them a book or two, and then left for home.  While we were there, I contacted the residence to see how David was doing.  He was fine.  In fact he was outside playing basketball.

a short while after that, he called mom.  and apologized.

 

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