heart events

had another heart event.  doctor tried to tell me it was just indigestion.  If that was the case, why did the nitro take away the pain in my chest?  plus, he gave me a script for nitro tablets.  if it was indigestion he should have given me something for that instead.  scary, this is the third one since Christmas 2010.  start meeting with a cardiologist week after next to do some testing.

a moment of brilliance

Every once in a while, not often mind you, but once in a while I am struck with flashes of brilliance.

When I talked to the psychiatrist this morning, I complained about how people were requesting records for our son from the hospital. Interesting thing happened then. She pulled up our son's file and was able to tell me exactly when records were sent to the residential facility where he is currently placed. Interesting. So I have a call into her office to determine when records were sent to the elementary school. :)

One of the tenets upon which the neglect and abuse charge was determined the way it was related to how the school requested records from the psychiatrist and never received them. If those records were purged from his elementary school file as I suspect they were, they would have a record of them at least being sent to the school.

I will be filing an appeal, but the more ammunition I can provide in the documentation for the appeal the better. How bad would it be for the school to be caught in a lie where records were doctored?

walkers

went to physical therapy yesterday, left with a walker.  blood pressure was a bit high as well.  the therapist said it feels like my legs are getting weaker instead of stronger.  continuing weekly visits for now, may increase to twice a week if improvement isn't shown.

yuck.

on a side note, talked to the staff at the residential facility regarding our son's return to public school.  she is going to push for a school planning meeting to take place so we can plan now for his return to public school.

I was invited to be on a task force for seclusion and restraint at the state level for department of human services.  meeting isn't until just before thanksgiving.

psychiatrist updated

I talked with our son's psychiatrist and updated her on his progress.  She thinks that he will be sabotaged if he goes back to his old school, which I agree with.  So we are advocating for a change in schools. I will homeschool him before I will let them mess him up again.

She is glad that he is doing so well in the residential facility.  But, saddened to hear the results of the abuse and neglect investigation.

testify - Legislative Council - Autism Bill

Going to testify about the emotional, mental and fiscal costs of an Autism diagnosis today with a team of three other people.  Promises to be an interesting day.  I don't mind talking to people.  I do mind, if they don't pay attention to what people are saying.  don't give us platitudes.

Wish us luck. :)

Partners in Policymaking

So I had my first session of Partners in Policymaking.  I think it will be a fantastic opportunity to learn how to be a better advocate for myself and others.  A lot of information was given out in a short time.  7 sessions left. each session is two days in length.

decision regarding the abuse and neglect complaint

Somehow the abuse and neglect complaint was decided without talking any witnesses.  The decision is that no services were required, because no evidence was found to substantiate that claim.  I guess it is ok to lock a child with mental heal issues in a room with furniture and other things such as scissors which he could use to hurt himself or others.

we are going to appeal.  I can't see how this can be acceptable practice.

a letter to my congressional reps.

I am writing to you about a problem I am facing. as the congressional representation from the Great State of North Dakota, I felt it necessary to share with you.
I am a 39 year old man with a family.  My wife is a teacher at a school on an Indian Reservation. My kids range in age from 10 to 18.  I have two chronic health conditions and have applied for disability as a result.  I am not able to work presently because of these illnesses and what the medication does to my body.
I have been out of work since December 2010. For the last four years, I have been self-employed as a computer consultant.
I don't mind paying for medical care.  I am on medicaid for those that think it is a great deal, I have something called recipient liability.  What this means is that I am responsible for a portion of my medical bill.  I don't have a problem with that. 
When I had blue cross blue shield, it was called a deductible. 
My deductible for medicaid is 952 dollars a month. Do you have a 12,000 a year deductible on your health insurance? 
I think that everyone should pay their share. 
Until I get approved for disability, this is my fee every month.  Now once I get approved for disability, they will pay all medical bills up to five months after the disability began.  That can take about two years. 
Keep in mind that this is only my liability, it doesn't include my wife, or any of our kids.  I don't think that the affordable care act is so affordable.  What do I do until my disability is decided?  Do I choose not to feed my family a couple of meals or do I choose not to take my medication?  So far we are able to handle it, but if the doctor changes just one medication, that could change in a heartbeat.  Pretty crazy isn't it? 
What happened to affordable care?

Regards,

Pain and then some...

I am in so much pain tonight.  My legs are stiff and ache from being in the car all day.  I got too much light today.  Now my knees are swollen and very stiff, to the point where bending them leads to a lot of pain.   Not sure I can do PT tomorrow. :( I hate being like this. I hate pain. I don't like feeling worthless. 

ok. pity party is over.

Thanks for listening.

Staffing session for our Child

Well, today we had staffing for our son.  As I have posted before he is in a residential facility right now learning behavior management among other things.  The staffing includes such people as myself, the mentor coordinator, the program coordinator, the therapist, psychologist, nurse, partnerships care coordinator, family inclusion therapist, our son, and today we included the principal from he school. We also invited our advocate from Protection and Advocacy.

Surprisingly our son and the principal didn't have any issues.  Which is good.  During the course of the staffing, which lasts about an hour, everyone present gets input into our sons care.  Including our son.  He didn't say a whole lot. He talked about responsibility, not pushing or provoking others, and being respectful.

Our son recognizes and indicates that he is frustrated with himself when he misbehaves.  He apparently doesn't like the person he becomes when he is having a bad day, but is at odds about how to control it.  The psychologist reported that he evaluated our son and determined that he doesn't have OCD, but has very severe ADHD.  His recommendation is to continue the medication, implement a new one, which I can't spell.. and work on some other things. 

Our son spends at least 15 minutes before school running and jumping on a trampoline.  The purpose of this exercise is to burn off a bunch of his excess energy.  If our son needs to be redirected, he goes willingly.  There are times when he has to be removed from the class and go on time out, he goes willingly.

I heard a lot of positive things about our son today. 

I mentioned that I thought we should have the classroom teacher come to the next staffing for our son.  I also said that we should have the special education strategist come to that staffing.  The principal promptly said that would entail an IEP meeting that would need to be scheduled.  I agreed with that, and said that I also thought that it would be beneficial for the teacher and strategist to hear some positive things about our son before he gets back to school so that they aren't just hearing negative things all the time.

The principal did what I called the Bobblehead during the whole meeting.  She had a grin on her face and her head bobbed up and down during the whole meeting.

The rep from the regional special services asked if the facility was just going to discharge our son or if he had to meet certain standards before he was discharged... The case manager said that our son had to meet specific criteria prior to discharge. 

Discharge has been pushed back to mid-December as the staff doesn't think our son is ready to come home.

On the way out of the meeting the rep from Protection and Advocacy asked me what I thought about certain things from the meeting.  I said that I didn't think that the principal was willing to accept our son back in the school.  I explained my reasons. One - past behavior from the staff at school.  Two - body language.  I didn't get any indication from the principal that told me that she was willing to work with us and our son to have positive outcomes.  Ever get that feeling about someone?  Yes, I did.  I thought that she was telling the people things she thought that they wanted to hear.

The strategist from regional special services asked about services in the school. Our son will get help transitioning back to the public setting.  He will have a mentor who will work with him in our community, there will be a staff member from the facility that comes to the school to help our son transition.  In the IEP session they will make more specific recommendations regarding classroom time.

Our son is on a sensory diet so we will be learning about that too.  He uses a weighted vest during the day, as welll as stress balls.  The stress balls give him something to focus on to keep his attention so he pays attention in school.

That is all for now.  Our next staffing is roughly a month from now.  We have family therapy  and inclusion seminar prior to that.  We are also planning some home visits for our son.  It was very good to see him today.

Support

I am a member of an online support system for people with fibromyalgia.  It is incredible to be able to communicate with other people who have this condition.  I wish that there was one for Lupus.  The only thing that is not good is that I am the only man.  the other members and I share humor, and talk about everything.  I think that it has helped.

I started physical therapy this week.  what school do you have to go to be a sadist?  I think therapists must go there too.

Life and other things

Well, I was informed today that my medicaid will have a deductable of nearly 1500 dollars starting next month.  seems that the 31k a year my wife gets teaching is too much income for medical assistance in a family of 7. 

I had a sleep study two weeks ago, and another one next week.  Get to learn how to sleep with something attached to my face. 

We have staffing for the little guy this next week.  supposedly they are going to try to get the principal from his school to come to it.  "to try to repair the relationship..."  yep, good luck with that, he still isn't going back to school there.

i asked the hard question last week.   "What happens if my health takes a turn for the worst when he comes home?"