a reflection on the year

a moment of reflection. Tomorrow marks the one year anniversary of my first heart event. I have had three this year. It is not an experience I recommend to anyone. I also had three mini-strokes a week after the March blizzard. The year has been a series of ebbs and flows. I haven't worked for a whole year, we closed my computer business that day. I spend my time taking care of myself, and my kids as much as my health allows. I have had to let go of a lot of things; siding the house, new roof on lower roof and garage, garden, yard work, and a few other things to name a few. You never know how much you do in a day, week or month until you can't do any of them anymore. I have been blessed with an incredible family who have stepped up to handle those things that I can not. In the process I have learned how hard it is to swallow pride. I have learned how easy it is to ask for help when I need it. Through it all, I have been given a couple of new diagnoses, including Fibromyalgia, and Hypothyroidism. I have a script for a walker, that I haven't had to use for a month now thanks to the magic of prednisone. I have two canes that I use as needed, though it seems more often lately. I have developed a fantastic group of online friends who offer me support when I need it. My friends in Fibromyalgia Chat and Reality Autism offer the support I couldn't find locally. I have a special place in my heart for the people who make up Carls group. They have listened to my rants, and shared their own. Heard about our struggles with the school district, and offered advice. In being part of that group, I have learned most of all that you can always move forward, and that sometimes taking two steps back is a step forward. In the coming weeks, I am launching a new site: http://www.whynotfathers.com to offer support for those fathers who suddenly find themselves staying home with their families. You can follow us on Twitter @whynotfathers I am starting to realize one thing that I value. Life is what you make it. Each day can be a good day, no matter how bad the day is. Making the decision to embrace the negative in a positive way will have an impact in your life. Thank you friends, and most of all thank you family, for giving me the past year, and putting up with my need to make sure the couch isn't lonely. :)

Merry Christmas Wishes and a Message.

For each that reads this, our wish is that you have a Merry Christmas. Remember those who have less good fortune than you. Remember our veterans in this time of war, and pray that they make it through the next 24 hours without death. For those families who have a loved one on deployment, please grant them peace of mind this day. Remember the homeless, that they may know warmth and not hunger. Welcome hope, and not despair. For those who are ill, a day of relief, an hour of calm, whatever they need. For the loved ones of the ill, may you find peace knowing that your loved one is cared for this day. In life, we choose how to live. May each of us live to our potential, embrace the challenge, and enjoy each breath. Hug your loved ones everyday, like it is the last time you will see them. Speak of your love for them, that they might remember your voice and your words. We live by action and deed. We lead by example, and word. For those who know only hatred in their heart, please let them feel love and friendship. A father of many.

A Christmas Message - Family Voices of North Dakota.

Greetings everyone as we enter this Christmas season. Isn't life glorious?

I decided to do something a little different this season for my Christmas post. In actuality, I don't recall doing anything last year, so let's call it a new tradition for A Father of Many.

You see, about 2 and a half years ago, I had the opportunity to participate in this seminar called “Parent Leadership Institute”. This seminar brought 23 participants to the small but wonderful town of Edgeley, North Dakota. The organization is called Family Voices of North Dakota. In what has become an annual event, leaders from across the country present leadership topics and training sessions on a wide variety of topics. Topics such as giving testimony to leaders and policy makers, sharing your story, learning what you know, and how to find what you don't know, as well as many other topics. The staff from Family Voices help mold the next generation of parent leaders through example and by showing a selfless sense of service to others. If they aren't a model, or Servant Leadership, then maybe the model needs to be redesigned.

Why is this significant?

Through the Parent Leadership Institute, the organization works to train parent leaders as stewards to help other parents in similar situations with their children. Situations can be a bad word depending on your perspective, but in this instance, it is a good word. Many families across the state of North Dakota are experiencing what can only be called extraordinary health issues, especially in regards to children.

The organization helps families by providing guidance on where to go for help. Who to call for help. Through a largely volunteer organization, staffed by regional part time hard working parents, and one executive director who is something of a spark plug, this organization provides support on an as needed basis. While working with diverse populations, including those who live on the Native American Reservations in our state, they work with federal, state and local agencies to get the families the support they need. And they do it on a shoe string budget.

Couple all of this energy with a volunteer board of directors, and you have an organization that puts the heart in the Family Voices of North Dakota logo. In our state nearly every city is located on a crossroad. It is fitting that the organization would take as their motto, “Navigating Crossroads to Hope”. In part because of the hard work of the staff, volunteers and their director, they provide hope to families from all walks of life.

Please join me in saying Thank You to Donene and the staff at Family Voices of North Dakota. One day, your family may need the hope that they can help you find. Sometimes all it takes to make a difference are comforting voices of friendly people.

If you are of a mind, and would like more information about the good work that this organization does, please do not hesitate to contact me. I would be happy to answer your questions. To be honest, it would be me giving back to the community for all that the Family Voices of North Dakota staff have done for me and my family.

On the same hand, if you have a child with Autism or a TBI that has been recently diagnosed, let me know, I have some experience being a parent of a child with Autism and another child with a TBI. I can offer some advice and guidance on where to get started on your quest for information.

Remember, your child's special health care needs don't have to be just physical or mental, they can be any combination of the two, or one of the two. All that is required of you is a phone call, and a few minutes of your time. Please, take a few minutes and make that call today. They can help you. Even if it is only because someone listened to you and your concerns for your child. Donene and a client did get the opportunity recently to participate in some events at the national level in Washington D.C. You can find more information about these gentle people on their website. http://www.fvnd.org

Now, I also have a motive to writing this entry. Our friends at Swanson Vitamins are giving a thousand dollars to the organization of my choice if I am lucky enough to win. You can find information about this contest on their site. Just click on the badge.

definition of bully and harassment - a letter to the superintendent

Mr NAME REDACTED Thank you for speaking with me.  We need to speak further regarding this matter. =========================== This is the http://www.dictionary.com definition of harassment. ha·rass·ment  [huh-ras-muhnt, har-uhs-muhnt] Show IPA noun the act or an instance of harassing,  or disturbing, pestering, or troubling repeatedly; persecution: She sued her boss for sexual harassment. This is the http://dictionary.com definition of bullying. bul·ly 1  [bool-ee] Show IPA noun, plural -lies, verb, -lied, -ly·ing, adjective, interjection noun 1. a blustering, quarrelsome, overbearing person who habitually badgers and intimidates smaller or weaker people. As I said during our brief discussion this afternoon, we have disagreed on verbiage before. this is the ND Century Code. SECTION 1. A new section to chapter 15.1-19 of the North Dakota Century Code is created and enacted as follows: Bullying - Definition. As used in this Act: 1. "Bullying" means: a. Conduct that occurs in a public school, on school district premises, in a district owned or leased schoolbus or school vehicle, or at any public school or school district sanctioned or sponsored activity or event and which: (1) Is so severe, pervasive, or objectively offensive that it substantially interferes with the student's educational opportunities; (2) Places the student in actual and reasonable fear of harm; (3) Places the student in actual and reasonable fear of damage to property of the student; or (4) Substantially disrupts the orderly operation of the public school; or b. Conduct that is received by a student while the student is in a public school, on school district premises, in a district owned or leased schoolbus or school vehicle, or at any public school or school district sanctioned or sponsored activity or event and which: (1) Is so severe, pervasive, or objectively offensive that it substantially interferes with the student's educational opportunities; (2) Places the student in actual and reasonable fear of harm; (3) Places the student in actual and reasonable fear of damage to property of the student; or (4) Substantially disrupts the orderly operation of the public school. 2. "Conduct" includes the use of technology or other electronic media. =================== If my daughters are so upset about the way these young ladies like NAME REDACTED (sp) are treating them, that it causes an interference in their basic right to an education, how does that not fall within the realm of bullying?  This is not a matter that I am taking lightly.  This is not a matter that the school should be taking lightly.  If it is happening to my girls, I guarantee you that it is happening to others.  The fact that you recognize NAME REDACTED attitude, personality and treatment of faculty and students, and don't do anything to remedy the issue tells me that the district don't take the matter seriously. What is the next step?  As I said, we need to have a conversation regarding this topic.  It needs to involve the community, and it needs to start before May. What is the next step?  Will the school address the bullying that my daughters are experiencing or won't it?  Inaction is a response. I need to know that you received this message.   Please respond that you at least received it. If necessary I will do an open records request regarding any email sent from myself to the school district to determine that you did in fact receive this email. Thank you

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affordable care

So, I went to fill a script for my daughter at the druggist.  As a result of the ObamaCare affordable care act thingy, her script isn't covered.  It would be if she was over 18, but then she wouldn't qualify for the program that would cover it, because she was over 18.

That defies logic.

I asked how much it would cost if I paid cash. 570 dollars.
I asked how much if I paid for two pills.  42 dollars.

My family lives in North Dakota.  Because of my health, I am not working.  Before affordable care was enacted, medicaid would have covered the tab.  In what way, shape or form is this affordable?  I am not independently wealth.  just for meds in our house, we are paying nearly 1500 a month.  if we add the script she was given this week, it would be over 2000.  our income is around 36k a year.  in what way is this affordable?  affordable to whom?

fiction or reality

You know, dads think that they are fairly strong. We fix things when we can, and if we don't know how, we get someone else to do the job.

I am going to try to develop a community discussion about bullying in this town.  adults doing it to adults, adults bullying students, and so on...  Life ain't easy.  But if we don't teach our kids to respect themselves, they will never respect other people.  kids mirror the behavior that they learn at home.  If the kids are bullying other kids, what does that tell society about their home life?

Now, I am not saying every home life is that way.  There are kids who follow the leader.  They often times see the bully as a leader and follow their example.  Doesn't make it right.  When the leader can be identified, would they deny being the bully/leader if challenged?  I wonder.  There is a bully in the senior class. That person has followers who mimic behavior and actions.  If the bully was called to task what would happen?

History shows us that when bullies are confronted they find others to blame.  Even a year ago.  Our fair district had students get caught cheating on a final exam.  Students, faced with failing the exam, complained to parents. Parents called the superintendent.  the exam was not counted toward final grades.  Why?

Maybe the teacher decided that the exam was flawed and through it out.
Maybe the teacher decided that the students deserved a break.
Maybe the superintendent brought pressure to bear on the teacher and the teacher through the exam out.
Maybe all of this is just supposition.  a figment of my imagination.

I am a writer. I can put words together and form coherent thoughts.  That scares people.  I am also a researcher.  If I look at a history and something looks wrong with it, I will try to find out what it is.

But then, there are people who will think that this post is fiction.  Can't be happening in our town.  There was a little town that thought it couldn't happen in their community.  There are places in our country with names like Paducah.  Omaha. Cape Fear. Columbine.  I do not wish those horrors on anyone.  all of the horrors that happened in the schools in those communities started or had their start as a result of bullies.

We can choose to believe that this is fiction.  Or we can take the necessary steps to make it stay fiction.  to do that we need to communicate as a community.

saw my daughter

Saw my daughter tonight. she looks and sounds so much better than she did on Wednesday. She asked me if I was disappointed with her. We talked about how I am always telling the kids to talk about and be honest about their feelings. I asked her how I could be disappointed in her doing what I have been telling her to do. I am not disappointed in her.

We talked about what is going to happen when she goes back to school and what she wants to happen. We talked about how people were eventually going to find out where she was, and why. We talked about what I needed to do to help our community develop a policy regarding bullying in the schools. I told her that unless she told me I could help her, that I didn't feel free to talk about it. I explained that it is happening to other kids. I explained that the only way we can begin the process of ending bullying is to talk about what is going on. I said, that means naming her. and talking about how she felt.

Before I left, she said: "you can help me."

I am so proud of her. I could just burst.

she didn't hurt herself. she did, however, have a weapon of choice, and a plan of action. which are two of the three pillars upon which suicides happen. I will say it again, I am forever grateful for the people who helped save her by convincing her to talk about how she was feeling.

Bullying

I am going to rant.

Bullying is an epidemic that needs to be eradicated like small pox.

When a child talks of hurting themselves because of the behaviors of a few, it is a community issue.  Everyone in the community needs to get involved in working toward a solution.

My family is affected by this.  Why?  Because of bullying.  We live in a small town, and are seen as outsiders by those who have lived here for a long time.  Not the parents so much as the kids. These behaviors are learned at home.  We need to work together to affect a change that shows the youth of today that bullying in any form is just not acceptable behavior.

A parent should not fear that their child will kill themselves.  Words can not express how grateful I am that my daughter sought the help she so desperately needed.  We need to bring immediate attention to this, and put in place whatever supports and/or committees are necessary to eliminate this problem.

Bullying occurs on so many levels, adults bullying co-workers, parents bullying kids, and so on.  This behavior is most often learned at home.  Please, speak to your children about how they are treating their peers.

Young people, if you know of someone who is experiencing this issue, you need to speak up.  talk to a teacher, write an anonymous note.  Anything, but please don't let it hide in the shadows.  Nothing good can come of that.

i beg you, please help end bullying now.

Thanksgiving Holiday

I give thanks.

My family was together for the holiday.  Our youngest came home from the residential facility for the weekend.  He was home from Wednesday to Sunday, and I am very proud to say that no major issues occurred.  It was a great weekend.  There were a few times when he wanted something his way, and we were able to handle it without a meltdown.  I think the only "major" issue was when he was caught playing with a screwdriver around an outlet.  He has been known to strip all of the outlet covers from a room.

There was a brief moment where he was sneaking around, but I think that was a test of his boundaries.  All in all it was a good weekend.

On a side note, my health has been kind of strange.  I lost my appetite last Wednesday and it just never really recovered.  It has been declining for a couple of weeks. I eat because I don't want to worry my family.  So tomorrow will put in a call to my doctor and see what she thinks.  But since I am scheduled to see her in two weeks, she may want to run labs now and then wait.

That is all for now faithful readers.  Hope you all had a great weekend.

IEP Meeting

Had an IEP meeting for our son.  Why do we continue to struggle with the school district?  This time, we brought the superintendents name into it.  I had talked to him late last week about the hesitation that we felt from the principal at the elementary school in accepting our son into the school, as well as including staff in meetings about our son.

It just seems crazy to me that what should be common sense when working with a child, they seem to lack.  If a child is in a residential facility for kids with special mental health needs, and the staff there has experience with that child, wouldn't it be beneficial to hear how those people work with the child to ensure that the child is as successful as he can be?  It would seem obvious to me.

So now, we are having a staffing in two weeks for our son, a staffing is a meeting of all of the people who participate in his care, and the school has been invited to participate in that meeting so that they can hear positive things about our son.  Even the staff at the residential facility thinks that would be a good idea.  We will see if they do actually participate.

I find myself excited at the possibilities for our son if his teacher is the person who participated in the meeting today.  She worked with two of our kids previously, and was very good in working with their strengths and weaknesses.

On another note, the plan is to bring our son into a public school in the city for an hour a day to see how he does in that setting.  If he is successful, the time will gradually increase. This will be communicated to his parents and the school district so that they can see how he is fairing.  A staff member from the residential facility will be touring the school that our son will go to after discharge, this will enable the staff to make recommendations about how they should do things when our son comes back.

Still not happy with the school district, seems to be unnecessary posturing on their part, but time will tell.

Appeal results

We received notice of our appeal determination today.  Evidently the only people who can appeal the decision is the person found to have committed the abuse or neglect.  Our appeal was denied because we weren't the ones who had been accused of the abuse of neglect.  

So evidently, in the state of North Dakota, it is acceptable practice to lock a child with special needs in a room all by himself as a means of restraint or control.  

For some reason, I have a huge problem with that.
1.  the room was on the second floor, and by the school's own admission, our son was banging on the windows with a chair.  what would have happened if the window had broke out, and he had gone through the window?

2.  in the room there was a desk, in that desk our son found two pairs of scissors, and by the school's own admission, he threatened to use them. Granted the principal later qualified her statement and said that our son just wanted to cut some paper. But still, he had access to what could have been a dangerous weapon.  

3.  If our son had developed a medical emergency of some kind while locked in that room, would they have been able to get the room unlocked fast enough to save him? 

Appeals and Support decisions.

Was sad to take our son back to the residential facility.  Had a great weekend.

Filed the appeal for the abuse and neglect complaint.  I commented that in my opinion academic records were tampered with.  The IEP created last January was based in part on  the psychiatric report from his doctor.  I said that I would sign whatever releases were necessary to facilitate the request of records relating to when records or information was sent to the school as well as the nature of the records sent to the school.

For a remedy, I said we wanted up to and including the termination of the principal and superintendent as well as the loss of license, and an apology. I don't want them to be able to harm any other children.

On another note I heard from the PATH organization and learned that our son qualifies for family support.   So working on releases and matching a family to him so that we can get some respite care that way.

thoughts

Why is the principal able to control our son's release date?  Because she thinks that his report card won't look good if he transfers back to the district with so few days left in the semester, our son is spending an extra 30 days in the residential facility.  I understand why the residential facility is doing what they are doing, they are structuring things so that one of their staff can spend time with our son in the school that he will be transferring back into.

The appeal for the abuse and neglect complaint decision will be sent in on Monday.  We had to list what we wanted for remedy.  We want an apology from the district, we want the principal to lose her license and job.  We want the superintendent to retire.  We can prove that the district received documentation from the various doctors associated with our sons care.  One of the reasons for the decision in the complaint was a lack of documentation from the doctors.  That tells me that someone doctored our sons school records.  That, I believe, is a felony. Two people are ultimately accountable for that action.  The principal and the superintendent.  If someone else did that, it is because they were directed to do so by their superiors.

A fantastic day

our son has been home for a home visit for 24 hours now.  It has been great having him here.  No outbursts, he is playing nicely with others, and we are overjoyed with having all of our children under the same roof. 

As it stands right now, he will be discharged from the residential facility on the 13th of January.  Steps are being taken by us and the staff of the agency that runs the facility to transition him into the public school and our home.  We are working on lining up respite care, and after care.

His psychiatrist is going to treat him again.

Through the Christmas break, he will be home periodically, he can't be home for the whole two weeks because of insurance issues.  So we can have him for a couple three days at a time.

a Staff meeting for our son.

had a meeting about our youngest child's return to public school.  As soon as we started talking about it, the principal piped up and said "public school may not be the best place for him".  the principal was pissed off that my wife and I refused to let a consultant for the school district sit in on the conference call.

Plus, we asked for the special education teacher that our son will be working with to be a participant in the next meeting.  We were told that the principal couldn't guarantee that.  The principal said that she would see.  We set up our meetings a month in advance, how hard would it be to schedule a conference call for a specific teacher?  Turns out that the principal might not be able to make that meeting because she has been elected the President of the Chamber of Commerce in our town and has another obligation.

Then the principal complained because the teacher at the residential facility has given reports that were read by another individual, because she had to be absent for medical reasons during the last meeting.  So we set up a time for a conference call with the teacher from the facility and the school.    Oh, and the special education teacher might not be able to participate in that meeting either.

Our son has the following diagnosis:  Severe ADHD, facets of Autism, facets of fetal alcohol Syndrome, Reactive attachment disorder, oppositional defiant, obsessive compulsive and pediatric bipolar.

It seems to my wife and I that they want to set him up for failure.

an incident in school.

my 12 year old, who has high functioning Autism, was provoked with pinching and name calling on Friday to a point where he struck another student. the other student was his best friend. They have an on and off relationship. my son knows it isn't right for people to fight like that. He also knows that name calling isn't right. our school has a new principal, so I am hoping to make sure that he understands that while my son deserves a punishment, they need to take somethings into consideration. People with Autism don't have the best social skills. wish me luck. My son rarely hits anyone. he would have to be seriously pissed off before that would happen.

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 against the school district.  We are still holding M accountable for his actions, but feel that the school district should be held accountable for theirs as well.

The past year has seen major health challenges for me, as well as a redefinition of what it is to be a man, at least for me.  I am still struggling to come to terms with the things I have lost, and am learning to further embrace the things I hold dear to my heart.

Friends close to our hearts have been uprooted due to flooding in their communities, and we thank our blessings that we are not affected in the same manner.

As I close this, I find myself excited about the challenges that lay ahead and reminiscent of the past.  I thank the people in the facebook group for their support of both me and each other. I find it amazing that we can bring together people of diverse backgrounds to discuss a common issue.  I have heard from people across the United States about the impact of my blog, and even from someone in Singapore.

Thank you friends.

A Home Visit

M is coming home for a four day visit next week.  We are so excited.  We will have staffing at the residential facility where he lives, and then participate in family therapy.  After that, we will be bringing him home with us.  Then Sunday, we have to take him back.  We will be planning to bring him home for Thanksgiving weekend.

On Tuesday next week, I will be meeting with my cardiologist.  Not sure what to expect there. Would be nice to know what is causing these heart events.  Maybe he will be able to shed some light on it for me.

The joys of....

Got to see our son yesterday for a bit.  For those of you that don't know, he is in a residential facility in the city about an hour and a half from our home.  We played Pictionary using random words that we drew out of a bag.  It was so much fun.

I had to explain to him why I was using a walker instead of my canes.  He was concerned about me.  When it came time for us to leave, he held my walker steady so it wouldn't move and tried to help me get up out of the couch.  I have bad knees, so this is a challenge.

I do so hope that he can come home with the level of success that he has attained in there.  He will hopefully be home by Christmas.  We have two home visits on the radar between now and then so we will see.  I am a realist, I know that he can't be perfect, and quite frankly I don't expect that.  If he could be even half as good as he is now, that would be a huge improvement over last school year.

I asked him if he was willing to try going back to school in our home town, where we had so many issues with the school, and he said yes.  I promise that I won't let them mess him up like they did last year. He doesn't deserve that.

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?"

new opportunities?

So I was in Denver this week doing a Title V Block Grant review for the Department of Human Services Region VIII.  It was an incredible experience.  I learned so much about what the state level has to go through in order to get funding from the federal government.

In the process, I shared a bit about myself and my efforts to develop a non-profit organization for Father's of Special Needs Kids. A lot of interest from the state.  In that they are going to be doing some leadership training for fathers in the next year.  So we traded contact information.  Whether or not it will open a door or not, I don't know.

While it is nice to have a break from the normal routine, I sure can't wait to get back to the family.  Going to stop and see Marc tomorrow.  Liz passed her driving test yesterday.  School starts next week.  We won't have a child at the elementary school until January or so. 

It will be nice to not have to deal with the crap and what not from the administration at the elementary.  Wonder what is going to happen with the abuse and neglect complaint.  Time will tell.  more later.

it's been a while...

It has been over a month since I posted an update.  So much has happened.

Marc continues to do well in his placement.  There have been a few incidents of violence, but nothing so major that law enforcement had to get involved.  Started with family therapy sessions as well. 

The big thing that happened is that I spent 6 days in the hospital. I had been sick off and on since Christmas 2010. First I had the heart event, then I had the TIA's.  well after the Fourth of July, I was feeling really run down.  My wife took me to the hospital for a check up.  During the drive down, my chest lit up with a pain I can't describe.  It went down my left arm and ended in my fingers.  I never again want to feel that kind of pain.  What was it?  No idea.  Seriously.  According to all of the tests, I did not have a heart attack. 

Yet something was wrong.  While I was in the hospital they would frequently wake me up and give me nitro-glycerin and morphene.  I couldn't walk without assistance.  I was shaky, alternating between very hot and cold.  I was miserable.

They performed a number of tests, as they thought that maybe I had experienced another stroke.  No, the MRI showed normal.  They did a CAT scan of my chest.  Output is 30% of normal through the left ventricle.  More tests.  They did a stress test, during which my blood pressure dropped to 80/62.  They did an ultrasound of the heart, and determined that my left ventricle is enlarged. 

During the six days, I had three different doctors, and two nurse practitioners.  Most were honest enough to say "we have no idea what is wrong with you." 

One doctor, who my wife affectionately nicknamed Dr Moron went so far as to order a psychiatrict consult because it was "all in my head."   At one point, he was ready to discharge me.  The nurse practitioner, my wife and the nurse on the floor all disagreed with that.  Then he said that "it must be a problem with your colon."

In the end, my wife flat out refused to take me home until we were allowed to see my reumotologist, who treats my Lupus.  Bright and early the next day, when she doesn't normally see patients I was wheeled into her office.  We tested to see if it was the Lupus.  No, the Lupus isn't active.  She reviewed the chart, asked me a lot of questions and then diagnosed me with Fibromyalgia.  Plus I have an enlarged left ventricle in my heart, and weak adrenal glands due to long term prednisone use.

In the end, I am something of an anomaly in that most of the people who get Lupus and Fibromyalgia are women between the ages of 30 and 50.  It is unusual to have either one of these two illnesses, let alone both of them. 

So now, I am trying to get better.  I am learning what my new limits are, and working on a disability application.  I am seriously sensitive to light, and feel like a lazy man because all I do is sit in a dark room and rest 90% of the time. 

Marc is due to come home around Christmas, and I find myself fearing how my body will react to the stress of his being back home. 

Placement

Well, our youngest started his placement in a group home.  It is a six month placement.  Time will tell how much good it does.  In the past when we tried therapy, most places have said that their place wasn't right for him after the first three or four days.  Hopefully that won't happen here.

no moral compass

my heart is breaking.  No moral compass.  He steals anything that catches his eye.  His favorite statement when confronted about something that is missing is "I don't have it" or "I don't know".  The house is in an upheaval now because he has stolen something important to just about everyone in the house. When we finally find the item or object buried in his stuff he says he didn't take it. Then says he doesn't know why he lied about taking it. 

To all of my family that I ever stole from when I was a kid, I am so sorry for doing that to you.  I really had no idea the damage I was doing to you or our family.  Even the little things of no value mean something to someone.

Falling through the cracks

If the hospital won't keep our son, then there are other places that won't take him.  Most offer the same level of care. 

Interesting that everyone talks about how our son is falling through the cracks.

I told the social worker from the hospital that we would bring our son home if necessary until he can begin at facility that we have chosen.  He didn't seem to think that was a good idea, and recommended Foster Care.  The social worker also thought that the school would provide an in home teacher for our son.  School ends next week.  Given their track record, I doubt that they would do that.  At least not this year. 

We are talking about a child with abandonment issues, how is placing him in a foster home going to make him feel?  Waiting for the doctor to call from the Psych Unit. Also have calls into the Partnerships Care Coordinator.  The question here, isn't "what is good for mom and dad?"  the question here is "what is best for our son and the rest of the family?"

I don't believe that putting our son in foster care until a bed opens at the facility we have chosen is a good idea.

Brain Damage and the Child.

Met with the Child Psychologist. Somethings I was told weren't a huge surprise, some things made me sad. Our son needs placement at Manchester House. he presents as someone who has suffered traumatic abuse in his life. She said that from reading his case history, she doesn't believe that the abuse is real, though it appears real to... our son.

Our son is afraid of a number of things. First, he is afraid that we are going to kick him out of our family. Second he is afraid that someone is going to kill him. His response to confrontation is a reflection of that. It is called fight or flight. Even the slightest confrontation is seen by him as a threat to his life. This also explains his assaults on the furniture and other violent behavior both at school and at home.

Our son was telling the doctor about some of his life. According to our son, his birth mother took him home from the hospital and fed him illegal drugs. He also told the doctor that he had a party late one night while everyone is sleeping and with the help of his friends put whipping cream all over mom and dad while they were sleeping.

In the future he may have issues with Dissociative Identity Disorder and other things. He exhibits some traits of Autism, so Autism therapy may help. Although he can't be diagnosed as having Autism Spectrum Disorder. She said that our son has an incredible ability to jump from thought to thought so quickly that it makes the average person dizzy and that it is also surprising that his IQ is as high as it is given the limitations the brain damage places on his ability to concentrate.

It is hard to see our child in this light.

The doctor said that he may learn some alternative behaviors, but that they will be learned and susceptible to replacement by other memories, rather than a learned behavior that stays with him throughout his life.

The doctor also stated that when our son comes home he needs respite care for the rest of the family, as well as a self-contained classroom, a one-on-one aide and a few other things. She thinks that he will need to be transported to another district until trust can be established with school personnel. Comments were made about our sons experience with the school so far. It is sad that everyone but the school could see the difficulties that he is faced with.

In my role as the chief disciplinarian for our son, he is afraid of me. The doctor said that if mom had that role, he would be afraid of her.

There is no magic fix for him. All that we can hope for is that he will learn to cope with the life he has, and be as successful as he can be in that regard.

As he reaches adulthood, he will need group home care.

Value of Family

What value do you place on the family unit?  When it comes to a child with mental disability, after you have done everything humanly possible to work with the child, is it giving up to let someone else take on the challenges of raising him or her to adulthood?

We are faced with the dilemma of placing our son in a residential setting for part of his life.  If it isn't our failure as parents that caused this outcome, then why do I feel like a failure?  Ultimately, I guess it is about what is right for the rest of the family.  It doesn't make the decision any easier.  But in the end, we do have other children that we love and value just as much as him.  In my mind, the decision has already been made, it is just a matter of when the placement begins. 

I have to tell myself that we did not fail him.  Even though he is going to be placed, it is a matter of his continued success in life and out of a desire to give him every opportunity to succeed that we do this.  Still, I feel like we are failing him.  In time, I will come to the realization that this is the next step in his care plan and not my failure.  Like the doctor said, we held on for him far longer than most other parents would have.  It isn't our son's fault that he is this way.  It is a product of his bio-moms drug use.

If our son is not successful in the initial placement, he will be placed in another facility in the state.  If that is not successful, he will be placed at a facility in another state.  Our son will need care of some kind for the rest of his life.  Some aspects of it will include structured work placement and things of that nature. 

Asking for help

Can't force someone to ask for help.  Can't force them to accept help.  Today one of our other kids asked for help.  I actually said thank you.  So we can start getting the other kids to therapy for help with dealing with the things that surround Marc.

Brain Damage and control

A lot has happened since my last post.  We received a tentative diagnosis of "brain injury" for our son. 
He started a partial hospitalization program last week, and today has been  a long day.  today is the first time I have heard someone use the term "brain damage" and his name in the same sentence.

M was put in the hospital from the program he was in.  When I asked what he did to necessitate him being put into the hospital.. the only thing i was told is that he was out of control.  Want a kick in the guts?  have someone tell you "we know he has brain damage".  I will wait to confirm "Brain Damage"  with the psychiatrist.  I know that the psychiatrist was talking about a brain injury diagnosis, but did not know that our son had been firmly diagnosed.   So our son is in the hospital again.  hopefully tomorrow I can get a better idea of what out of control is.

A response and more

Heard from the Principal of our school today.

The placement meeting is to talk about transportation costs for taking him to the hospitalization program. Not one word was said about our privacy concerns. Interesting that I had an explanation of why they scheduled it for when we couldn't be there. We also were told that we can invite anyone that we would like, but since they don't have addresses for the people involved, we are responsible for inviting them. So now we are meeting not this week, but next week before he starts the program.

They scheduled the meeting so that they could invite the head of the local Special Services group and because they feel a sense of urgency regarding M, because he attacked his teacher. I have not seen any incident reports, sheriff reports or other statements regarding the incident last week that resulted in his suspension. The deputy said that she would get me copies of their stuff when she comes back on shift.

toll on family and health

I find myself thinking more and more about what our district is doing to M.  I can't fathom the level of failure that they are exhibiting.  Failure isn't even the right word.  I don't know what is.

Health problems are beginning to crop up in my life.  My other kids are feeling the toll of this on their lives.  They know that M is mentally ill.  They also know that there little brother is being treated in a manner that isn't right.  If a 12 year old boy with autism can see this, surely the school can see this.

We are meeting with the psychiatrist tomorrow.  Hopefully Thursday will begin the process of reentry into the classroom.  He really only has two days of school left before he starts the alternative placement and partial hospitalization recommended by his doctor. Then he will be out of the district until fall.  I can't stop correcting the wrong just because he is in an alternative placement.  If I do, what happens next year?  Do we just pick up where we left off?  I find it unconscionable that the principal and teacher can call themselves educators or professionals.

I was diagnosed with an auto-immune disorder.  There was a period when the disorder was in "remission" or at least not active.  That has ceased to be the case.  Since the school has started this school year, I have had heart trouble, mini strokes and dizzy spells to name a few issues.  All caused in part by stress. 

We are going to file a complaint with DPI and ask for a due process hearing. I really don't need to do both.  Depending on the outcome of that process, we will proceed with litigation.  I am not sure how I am going to pay for that, but will find a way.  The psychiatrist recommended contacting the state law school to see if they would take it as a teaching case.  I am starting that process now.  Not sure how I would go about it, but it all starts with a phone call or letter.

PWN - Prior Written Notice

Received the PWN for M's Manifestation Determination.  The PWN was taped to a classroom door.  What happened to confidentiality?  They scheduled the meeting for a time when I specifically told them I could not be there.  The PWN also states that they want to discuss placement.  How do they jump from suspension to manifestation determination to placement without meeting and without discussion?


What happened to following the law?  I am sending copies of the PWN to our advocate and care coordinators.  I am also going to include it and the method of delivery in our complaint to DPI.

So frustrating.

Going public again.

I took down public access to my blog in the hopes that the district would do their jobs. Initially they did everything we asked of them. They have stopped doing their jobs in reference to M, so I am making the blog publicly accessible again.

They say my blog intimidates them and that they feel threatened. I have never made threats on this blog. In fact I don't mention the district by name or the names of any of the teachers.

No employees of the district have access to my facebook. No members of the school board have access to my facebook. It is just a blog that is being written about a father's desire to ensure that his son gets the services and education that he is entitled to given the mental illness that he is afflicted with. I even removed my son's picture from the blog so that they can't use that against him and us.

Suspension

M has been suspended from school again for assault. This will put him at 10 days suspension and force the manifestation determination. Manifestation Determination is the schools responsibility to determine if M's behavior is a result of his diagnosis. Our psychiatrist recommends that we get an attorney as the school is discriminating against M.

We have sent letters to the Southern Poverty Law Center and the NAACP. I explained to the superintendent that we are filing complaints with the appropriate state and federal agencies. The district is violating M's access to a FAPE. Free and Appropriate Public Education.

The school wanted us to hospitalize M after this latest incident for his safety. In talking with the psychiatrist, since M doesn't have the violent outbursts at home, there is no need to hospitalize him for safety. Very frustrated with our district.

M starts partial hospitalization the week after next, so really only has four days of school left for this school year. We are concerned for my wife's job because of the school propensity to call every 20 minutes and complain about M. We have 4 other kids in our family. They have appointments that take us into the city, as a result of me being out of town they call my wife. It wouldn't be so bad, but the school only calls five times before they tell us to come and get M.

another call

I got another call from the school today. It seems M got a hold of a pair of scissors.

The school principal called and told me that M had two pairs of scissors and a rock and was in a room all by himself threatening to hurt someone. I raced to the school and when I got there, M was sitting calmly in a chair. The Principal told me that she "may have misread things". I could not believe it.

Evidently M found a pair of scissors in a desk, and said "I should use these". That necessitated the need for them to call me.

I asked for incident reports. The principal sent one back which again included my words. I don't understand that. No where in the incident report does it say that she told me that he was locked in a room and threatening people.

I put in a call to Protection and Advocacy. I also sent an email to the Superintendent asking about filing a complaint.

I have to protect my son from them now.

A bad day...

I could tell right away that M's day was shot. He hadn't even entered the school yet. What happened? He left his back pack in the van, and his sister grabbed him to try to get him to stop. This is the wrong thing to do with M. I told her that I would be getting a call from the school before noon.

Sure enough the call came. M tore apart the resource room at the school. Then at recess started threatening his classmates. So he got in school suspension for the remainder of the day. M is a very active child and can't sit still for more than a few seconds, and they took away his recess.

I understand consequences, but wouldn't it be better to burn off the energy that builds up rather than keep it in?

Communication

My wife and I have been talking to the other kids about M's diagnosis and possible long term placement in a residential facility. They are sad, but taking it well. M doesn't seem to care either way.

Long term, we are concerned about him hurting someone. The doctor describes M as an antisocial personality disorder diagnosis waiting to happen. I asked why waiting. Evidently, they can't be diagnosed with that disorder until adulthood. I don't know why. At any rate. We are upset. I would like to have a long talk with his birth mother. M doesn't deserve this.

Half a day

M made it half a day before the school sent him home. He wandered away from the room he does his school work in. He was uncooperative. It doesn't matter to these people that he is mentally ill.

thinking of getting a lawyer involved.

a return to school.

Time goes so fast. It has been 10 days since my last post. :) M was in the hospital for his medwash. Came home last night. I took him to school this morning. I shared the med info with the school. I came home.

Shortly after I got home the school called. The principal told me that they need a discharge summary from the hospital for M. I asked why. The response was so that they could know what behaviors to watch for. I explained that as soon as I could talk to the doctor I would get her what they needed. Her response was that she needed it immediately. Then she told me that if M had any behaviors they would call me to come and get him. This upset me.

I called the doctor. She didn't sound happy and asked for the name of the principal and the telephone number for the school. She also asked me if I had an attorney. I asked if I needed one, and she said I might before we were done.

I then called the superintendent of the school district. I explained what the principal said, and told him that I was not happy that M had just gotten back to school and she was talking about sending him home already. I said that M has a right to an education. He agreed and said he would head over to the elementary school today.

I then got a call from the principal commending me on the doctor and apologizing if I misunderstood what she said about sending M home if he had a behavior.

About an hour later, I heard from the school again. They said that M was really tired and wanted to know what meds he took this morning. I explained what they were. I then talked to the special education coordinator and she said that M was really tired. And that he really shouldn't be at school because they didn't have a reentry meeting for him. I asked why we needed the reentry meeting, and she said it was because they needed to know what the doctor said. So I explained that the doctor had called and talked to the principal. The coordinator said that she would talk to the principal.

I am frustrated because it seems never ending to me that they want to keep M out of their school which is funded in part by my tax dollars.

medwash

The long awaited medwash begins tomorrow morning for M. I hate the thought of leaving him at the hospital by himself to go through this, but know that it is necessary. Hopefully this brings about the changes that help him be more stable.

eventful week

It was an eventful week. Monday the 14th I went to the dr because of dizzy spells when I stood up. Really high blood pressure. Got meds for that. Thursday had lunch with my wife and noticed some numbness in the left side of my face. It passed after 20 minutes but left me exhausted. That night it happened again, plus I was feeling dizzy even while laying down, and the exhaustion was even deeper afterward. Friday went back to the doctor. Had the numbness down the left side of my face, as I was explaining to the doctor what was going on, she called an ambulance. Spent Friday night in the hospital. The end diagnosis is I was struck by a series of mini-strokes. 39 years old. I am on the mend now, my face feels weird where the strokes landed, but feel good otherwise. Until my body adjusts to the lower blood pressure, will continue to feel dizzy.

Life is good.

New Psychiatrist - Busy Psychiatrist

Frustrated that I called M's Psychiatrist yesterday and they haven't called back. Left another message.

Receptionist told me that I needed to call over to some unit and ask if there was a bed open.

"nope," I said. "That is the doctor's job."



grrrrr!

Personal Health

So how do I balance my health with the special mental health needs of M. I can't just tell my heart to behave. I feel like I am always "on" when he is around. Constantly aware of what he is doing. Constant vigil. It is hard. Today my blood pressure was intense. 162/106. Which is not good, especially considering the Heart Event I had in December. So back on the metropolol for my blood pressure.

Trying to get in touch with M's psychiatrist about that empty bed for him to begin his med wash. No luck yet.

M continues to act out like a baby, bark like a dog, and do those kinds of things, yesterday he stole a pocket knife and some other things.

A blowout

M just had a major blowout.

M is very difficult to deal with him when he is like that. i had him in a basket hold and ended up laying across part of his body to keep him from hurting either me or himself.

When he does this we remove him from where his siblings are, as they get very upset about Marc's behavior. In the process of removing him, Marc latched onto a wall and ended up with pretty good scratches on one arm. Very strong when the adrenaline gets flowing.

I feel for him, I got him calmed down and everything was O.K.. All because I asked him where he had hidden a pastry in the living room. I now have a bruise where the incision was from when i had stitches a couple of weeks ago.

It is nothing compared to the terror he must feel when this happens to him.

A prayer

A prayer from a parent for their son.
God,
Even when he is having a bad day, we still love him, that is never in question. He exasperates us, makes us crazy sometimes, but we love him. He is our son, and important in our lives. We will take what You have given him and say thank you. THANK YOU. Oh, and God, if you are hearing this... please let tomorrow be a good day.

~ Amen

Stuff

No word yet from the Dr, regarding M's med wash. All in due time.

It is frustrating, M is regressing emotionally. Sometimes it is like having a three year old in the house again. This past weekend he wet his pants a couple of times. We were at home, and have two bathrooms. The school special ed teacher noticed it too, after I talked about it in our communication notebook. A communication notebook is just a notebook that we write daily concerns about M in. The special ed teacher writes her concerns about the day, as well as any behaviors that she saw.

The other thing is he asked my wife and I to break his arm. Not sure what that is about. Life with M has been difficult at home. Some say he acts that way at home because he knows we will love him anyway.

Having M in the home is have an affect on our other four children.

We re-certified for SNAP (food stamps) today. I was told that I need to be actively seeking work. It doesn't matter that I am regularly being called to the school to care for M, or taking him or one of the other four kids to doctor appointments. All that matters to them is that I be working. My wife could stay home, but not me.

I don't understand why it is o.k. for moms to give up their career for their children and be stay-at-home moms, but not dads. I didn't do it willingly, but saw a need and since I owned my own business at the time, I was the logical choice for filling the role. We have since closed the business.

More soon. It will get better. I don't want to believe that it could get worse, so will go with it will get better. :)

Dr Psychiatry

Met with the psychiatrist. some of the issues that M has might be related to the combination of meds that he is on. We are changing his meds. Wholesale change in meds. We are going to hospitalize him as soon as a bed opens up and he will come off all of his current meds. (called a med wash) then we will start him on new meds, beginning with a med for the bipolar disorder and working out from there with the bipolar disorder as the base diagnosis and beginning point for treatment.

As the doctor says, we won't cure him, but we can help him be better, and then, in time, he can learn to control some of his behaviors. Every time she looks at the med list from our previous psychiatrist, she just shakes her head...

When they pull him off the meds, he will be in the hospital as it happens, we are the only ones who know for sure what he is like without his meds.

Cell phone theft

M stole again. Four cell phones from the school. I think that they are teaching resources.

Last week in our meeting with the school administration we asked them to escort M to the main hallway of the school where I wait for him and our other boys. To keep him from following through on the compulsion to take things that don't belong to him. The agreed upon solution was for me to wait in the hall outside the Resource Room. I won't do that until I get it in writing from the school, especially after they told me that people are intimidated by me.

here is a thought... what if the phones were intentionally left out? I can't prove it, but every teacher, staff person in the building is aware of the issues with M stealing stuff.

In order for him to be Successful, the school needs to be fully involved in the goal for him to be successful. They claim that they are, but my gut tells me that they would just as soon as get him out of the school.

Questions

We have been instructed to pass a notebook back and forth to the school with comments and questions regarding our son. Today we asked why the case manager wasn't at our meeting last week. The answer: "Since the meeting is administrative, and not about M's IEP, I was told I didn't need to be there." Since we talked at length about the case manager, and the statements made to the Deputy Sheriff, as well as the IEP, it would have been good for her to be there to talk things out and move forward.

A dear friend told me...

A person dear to my heart told me something I thought I would share. As a parent of a special needs child, or children as the case may be, we need to celebrate the good things in their lives. Lately, I have been engulfed in the negative aspects of trying to deal with their lives.

Their lives are so much more complex than mine. The simple joys of getting through a morning, or afternoon without problems should be a celebration. Getting through a whole day is a victory. If that is the case, then what is a week of good days worth?

We had a good week, both in school and at home. That should be celebrated. Because it is a HUGE Victory. It is a positive way to begin the next week. Sometimes, victory occurs first with small beginnings.

A celebration such as this in the life of one of our boys is huge.

A person dear to my heart also said that I shouldn't forget about my wife. Together we are team that goes against considerable odds on behalf of our children. We sometimes forget that we are more to each other than a source of income, a meal, a warm bed, or someone to yell at when times are tough.

We forget the things in our lives that made us a team before we had kids. The love that we share. To remember these things is not to forget the children. We are a team. We need to work on that as well as all of the things we do for our kids. These things need to be nurtured, lest they be lost.

And then I think about my girls. They help us make our home what it is. Ready to help. Sometimes with complaint... :) I can't forget the girls. Be it helping to cook supper, or wrangling the boys so mom and dad can talk about the day privately, they are ready with a quick joke, a grin, and hugs when needed.

We tell them we want them to be teenagers. I am proud of the young ladies they have become. I don't want to embarrass them so won't say more, because I know they will read this... thanks girls!!!

Noticed something

Since the school thinks the blog is gone, everyone talks to me again. What exactly are they afraid of? I only post the things that happen to one of the kids on this blog, either good or bad. What is so bad about that?

I don't much care if they like me or not. What I do care about is how they treat my kids.

Probation Officer Conversation

I talked with the probation officer today for M. She hasn't gotten the police report from the incident yet - the incident happened three weeks ago. I explained that the school said the report was wrong, and that when we asked them to contact the sheriff's office to get it corrected, the school told us it was our responsibility to get it corrected. She also told us that M is getting a new probation officer because she is no longer going to handle cases from our county. How frustrating. She thinks it is odd that the school would first state that the report is wrong, and then state that it was our responsibility to get it corrected. She didn't think that was right.

She did say that they would be in touch as soon as the police report came in.

Underground Blogger

I have taken my blog underground. Seems like some people in the school district took offense to it. They felt threatened by it. So here it is. ndfatheroffive.blogspot.com no longer exists. welcome to afatherofmany.blogspot.com. You need an invite to even be able to read this. As a result, if you know someone who would benefit from reading my blog, let me know their email address. as long as they are not affiliated with our school district, I will let them in. That said, please don't share what you read here with your school district. They might take offense and feel threatened by it. I won't tell you what school district we are in. :)

Paperwork

I wish that all of these agencies that we work with for special needs kids would share intake information. More paperwork. Are there any trees left in the world? I have taken to asking if there is an online form I can fill out. The answer is always no. It wouldn't be so bad, but every form asks for the same information. What happened to the paperwork reduction act?

End of a Good Week

M had a good week over all.  I told the speech therapist not to engage M in any power struggles. 

Talked with Protection and Advocacy (P and A) on Friday.  Signed a bunch of releases so that they can look at his school, psych, and probation records.  Faxed copies of the Sheriff report to their office, as well as our copy of the IEP, witness statements, and other information we thought important.  She made the comment that it sounded like the school needed an education in how to work with someone like M.

Spent some time talking to the school counselor. He didn't understand why three different stories were told by the people who were there the day M experienced his break down.

Evidently the aide that was working in Special Ed with M has been released from employment at the school.  I wonder if this is in retaliation for her statement on the day of the incident. 

On this coming Thursday we will have our second meeting with the school.  It is scheduled for 1 to 4 on Thursday.  Hopefully P and A can be there.

I am reading From Emotion to Advocacy by the Wrights from wrightslaw.com. 

Goodness

It has been a good week.  M has had very few problems this week.  The problems he has had are more typical of a child his age.  Pushing someone who cut in line.  He is still argumentative, and really likes to sass and talk back. 

Had to sit the girls down last night and reestablish ground rules.  It takes the whole family to make our house work.  We appreciate their help, but when they fall short, someone else is left holding the bag and taking up the slack.  The biggest issue is empty washing machines.  An empty machine in our house is a waste of resources.  There is always laundry to do. 

Normal problems... :)  Three cheers for our house!!!

Now, I am waiting on a call from P and A.  Been waiting for over a week. I called and left a message with the lady who did the intake.  She called back and said she would resend my contact info to the advocate who is assigned to our case.  Still waiting for a call from her.  Very frustrating.

We meet a week from today with the school, so I hope that we can have the advocate with us.  It doesn't bode well.

repetition

Noticed something on Friday, and paid more attention to it over the weekend.  M has started repeating words and phrases four or five times or more.  Doesn't matter if it is something off the television, something someone said, or something he came up with on his own.  Probably just a phase.  :)

He was being especially difficult this morning.  His spoon got milk on it, so he had to get his socks on.  I have no idea why he needed socks for a wet spoon.  Then he got difficult with getting his snow pants on and cooperating to get in the van.  His siblings don't like it when he does that.  I don't like it either, but recognize the mental illness causing some of his behaviors, whereas they just seem him as being difficult.

Now, how to educate them to see the mental illness as well as the behavior?

seeing the sunrise

Seeing the sunrise is like seeing the laughter in my kids' eyes. Beautiful, refreshing everyday, and something I can't wait to see again.

Stuff

Spent the day with M, just him and me in the city. New psychiatrist said we should charge the school for putting their hands on M. According to their statements, they lifted him before he had his episode and attacked the teacher last week. That is a no-no. She felt it was odd that the statements didn't match the incident report. Ah well. Drew blood for the genetic testing today. M handled it like a trooper. No tears, talked all the way through. He listened very well all morning as well. Didn't have to be told repeatedly to not do stuff. I am proud of him, and told him so. Then when I got home he helped me break ice in the driveway. Kept telling me not to over do it because I had surgery on my arm yesterday. "Don't hurt that arm dad..."

It was cute.

SSI

Got a call from SSA regarding M. We applied for SSI on his behalf. They lost the electronic data that we submitted via the electronic form on the socialsecurity.gov website. How do you lose electronic data?

Was told I shouldn't have used that online form for a child disability report. Now I have to do it again via phone conference.

tag team school meetings

What really pisses me off, is that at the reentry meeting yesterday for M, they tried to talk circles around my wife and got her upset. I don't go for tag team events where one side only has one person on their team and the opposing force has 6.

What ever happened to following Roberts Rules of Order, where one person speaks at a time?

incident report from school

Just got a copy of the incident report. After reading it, I am not sure that I was even in the room last friday talking with the deputy. According to the incident report, I am the one who requested charges. According to the incident report, I am very relaxed when dealing with issues regarding my children, and was laughing and joking and that incidents of this nature are not to be taken lightly.

I am anything but relaxed. My outward demeanor is relaxed. What good does it do to rant, and shout and get angry about mental illness? As much as I want it to, it isn't going to go away.

I was told that the school is mandated to press charges. I was told that out of school suspension was mandated. What a crock, now they are making things up to suit there story. When my wife gets home, will compare the "incident report" with the statements that they gave the deputy.

Very frustrated.

meeting regarding reentry into the school

we were invited to a meeting about M returning to school after his suspension for assaulting his teacher. We asked on Friday for copies of the teacher's statements that were given to the deputy sheriff and were denied. We received copies of the statements yesterday my wife met with the school this morning. M did not need to attend this meeting about his reentry into the school.

So my wife brought up the deputies report and statements provided by the teachers. she was told by one of the teacher's involved that the deputies report was wrong. If the deputies report is based on the teacher's statements, then are the teachers statements wrong?

we also asked the following questions:

1. If the teacher’s had nothing to hide, why were we not given copies of the statements written by the teachers immediately after the incident occurred? we had to contact the Sheriff directly to get the statements, we received the statements on February 8, 2011. Without accurate information we have only been able to form an opinion based on what M has told us.

2. Where in the CPI training manual does is it say that it is ok to carry a child that is not your own, as a means of restraint.

3. Why did a teacher put M into a hold on the floor? Is this taught by CPI?

4. Why do the statements made by the teachers’ have so many variations? And which statement is accurate?

5. Where in the Parent/Student Handbook does it state that it is mandatory to file criminal charges against a child for assaulting a teacher?

6. Where in the Parent/Student Handbook does it state that the child has to be suspended for three days for assaulting his teacher?

7. Where is our copy of the IEP that was developed for M?

8. If the Love Logic principles of discipline are being used, where in the handbook does it state that the school uses CPI?

9. Why was 911 called, and not the Sheriff’s Department’s regular number? How is this an emergency?

My wife also asked about meetings where someone always has to leave early. The meetings are supposed to be scheduled for convenience of the parent’s. We were told that we were to schedule another meeting for next week ...that I could also attend.

a thought

My wife and I were looking for people who could help advocate for M. We stumbled across a link to the education advocacy site at the NAACP.

We forget that he is African-American. We don't see him as African-American, we see him as our son.

Just had to share that thought.

We don't want him to be a political pawn for others to use to further an agenda.

On a side note, I have been in touch with everyone under the sun today. Protection and Advocacy, Federation of Families, Juvenile Services, Human Service Center. Just waiting for results.

Meeting with the superintendent of the school tomorrow.

Dads Groups

No offense moms, but dads need a group just for themselves. It isn't easy sharing your feelings with another person, it is even harder if you are male. I am not talking about a get down and drunk group. I am talking about a group that is uniquely father based. Where we can share our hopes and dreams for our children with others who understand our perspective as a father.

Since I started this blog, I have had a number of dads email me and say "I thought it was just me..." Father's shouldn't be made to feel that way.

Know of one? I searched the Internet and found a couple, but none in North Dakota, and most deal with child support and single dads. While that is important, this group is about the special needs of our kids.

Maybe it is time to start a group.

What do you think? Let me know on Facebook. http://www.facebook.com/carlyoungnd or send me an email... carl@clientfactor.com

Thanks.

Preparations

We are getting ready for meetings with the school. We are getting some assistance from an Education Specialist at the University. She asked to be invited to our next meeting, we are hoping for assistance from Protection and Advocacy as well.

We are going to invite the school superintendent.

If this doesn't work, we will seek legal advice, under the Americans with Disabilities and Civil Rights Acts.

On a plus side, we asked for an increase in the subsidy payment we get for M because of the special needs adoption and it was approved.

Waiting for SSI determination.

Waiting for Spring.

*$(%*& School!!!

By M's standards, he had a good week. Unitl 2:30 pm on Friday afternoon. He rolled his pencil away and said he didn't want to. School ends at 3:10. Couldn't we just let it go.

Nope.

Got a call at 2:50 that the sheriff was at the school for M.

Seems that after M said no, someone who doesn't work with him, got involved and leaned on the table using her fists to hold herself up. (which some would consider a threatening position.) To quote the teacher who is working with M, he vacated which is the term that we use to describe what happens to him when he has a manic episode. It took two people to restrain him, and one person got bit in the process. The person who got bit was the person who doesn't work with him and who helped (in my view) escalate the whole process.

The school followed the IEP in that they called me, couldn't reach me, so called the sheriff. Reports were files, and now M has another assault charge pending.

I asked for a copy of the report since M is a minor. Was told that one of the teachers who wrote a report was uncomfortable with me having a copy of the report.

I have been in touch with a number of people and agencies since this happened.
I have been in touch with Protection and Advocacy. I have been in touch with the Sheriffs office to get a copy of the report. As a parent of the person charged, who is a minor, I feel I should have a right to receive the statements. I have been in touch with M's probation officer. I have been in touch with the psychiatrist.

I even tried to get in touch with the superintendent of the school.

M has mental health issues that the school knows about. Someone approached him in a manner that he saw as confrontational. (even unconsciously) He is not innocent. I am not say that he is.

M is on three days of out of school suspension.

Early next week, we will be demanding meetings with the superintendent, we are hoping to bring protection and advocacy. We are hoping and planning for M to be reinstated.

For the record, the probation officer (PO) gave me her opinion. She doesn't think that the school is doing enough for him. I explained to the PO that we hadn't her from Partnerships yet. I also explained who all I talked with as a result of this incident.

manic episode behavior

Another thing M likes to do when he is having a manic episode is throw himself around. I have seen him throw himself at the wall, or bring himself from a standing position to a horizontal position in mid air, then letting himself fall to the floor. I have seen him land on his head. Then if he knows no one but you saw him do it, he will accuse you of hurting him.

We used to think that his brothers and sisters were beating on him, until we saw him do that.

manic episodes

At least once a day M has a manic episode that causes him to explode in anger.

I am trying to teach myself how to defuse these episodes. It starts by not allowing him to push buttons. Walking away or listening to an mp3 helps.

The theory being that if I don't feed the episode he can't explode. Started just letting him have things that he takes. Will deal with the consequences of his actions later. Far better to avoid the confrontation now then to have the stress of the extreme blow out now. He hates it when I do that, but it also seems to be helping with the problem. Once I am certain that he is past the blow out stage, then we deal with the consequences of taking things that don't belong to him.

M is a master at manipulating the environment to suit his emotional needs. Seems like if he wants a confrontation bad enough, there is no getting away from it. Once he has it, everything is fine.

obsessions

M has a penchant for repeating two or three times everything that he hears. While we fine it annoying, we have to remember that he may need to do that for his compulsion. There are worse things that he could feel compelled to do. Sometimes when he does it, I am not entirely sure that he even knows that he does it.

The other thing is that he likes to stare. I hate to admit that hit creeps me out to have him staring at me for 5 minutes or more. most of the time a quick reminder to not stare because it is impolite and he will stop. Redirection helps, but sometimes, we have to really get on him to stop.

oh, and the cat is in heat. Can't wait until we can get her spayed.

EKG and EEG

M did really well with both tests. The EKG results came back normal. Waiting on the EEG results.

Got a little frustrated with the Federal Building.
Can't take cell phones into the building.
Can't take knives into the building. (including pocket knives and finger nail clippers)
Can't have any electronic devices, including calculators, digital voice recorders, and the like.
Had to take off my belt to get through the scanner.

Through it all, M was a trooper. Stopped for lunch at McD's on the way home.

On the plus side we got our application for SSI in. Now we wait for the determination which will likely be a denial, that we can appeal. We may get denied two or three times before we get approved. That is the way the system works, of course, according to the lady at Social Security, we might get lucky. Could take 6 months for the initial determination. Which is really nice considering I can't work right now because of the needs of my three special needs boys. Once we get determination for one, we will apply for the other two.