Autism, Aspergers, Rob Gorski,Special Needs Parenting, Reactive Attachment Disorder, Fibromyalgia,

Tag Archive: schizoaffective disorder

Mar 06 2013

The tension is mounting already

I realize that this will sound cliché but you can cut the tension in our home with a knife. Gavin’s been home for two days now and to say that everyone is in edge would be grossly understating things. 

Truthfully, he’s been pretty calm but we’re already seeing the manipulation starting and the stress level in the house is climbing.

At the moment, we’re working on getting his medications straightened out and getting all the documentation we need for the changes that need to happen at school.  Physically, he’s been pretty stable today so he’s probably going to return to school in the morning. 

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As bad as it may sound, we already need the break.

Lizze is facing this situation with courage and grace, even though she’s scared to death of him.

I don’t know how to explain what living with a child like Gavin can do to even the strongest of people. Lizze is the absolute strongest person I know and Gavin’s tortured her to the point that even talking about him coming home causes an anxiety attack. 

He’s already influencing the other kids and it’s quite apparent that he hasn’t lost the ability to control people through manipulation.

One of the most frustrating things is that from the outside looking in, he seems like the sweetest kid in the world but the reality is much darker.

The combination of Aspergers, Reactive Attachment Disorder, Bipolar, schizoaffective Disorder, ODD and ADHD makes it extremely difficult to know what’s what, because many of the symptoms overlap.  The water is so muddy that you can’t see your hand in front of your face, let alone navigate the complex and confusing journey that is Gavin’s mental health.

This doesn’t even begin to factor in his extremely rare medical issues that seem to get more and more complex as things continue to worsen.

I feel so broken right now because I don’t think I’m doing anyone any good.  I can’t figure out a solution to this where everyone is taken care of.  No matter what I do, someone will pay a very high price.

Despite all this, I’m really trying to remain positive. 

To be completely honest, this is the closest I’ve ever been to giving up hope and I hate that.

I have to remain hopeful or at least learn to fake it because my family is looking to me. I have to pull us all through this and I have no idea how to do that. 

It’s really important to me that I still give back to the community and try to improve the lives of other families, even if my hands are tied with mine.  I want my kids to know how important it is to show compassion, even if you have nothing more to give. I don’t want them to be an example,  I want them to set the example.
I truly believe in paying it forward and that’s the example I want to set for my kids.

For tonight, I think I’m going to try an help Lizze to relax and maybe even relax a bit myself. 

Elliott is getting sicker and while he doesn’t know it yet, he’s going to the doctors in the morning.  Unfortunately, we have to hide this from him until the last minute because he’s going to completely freak out and the less time he has to worry, the better off he will be.  All he’s going for is a check up and to see if he needs antibiotics. Even with that knowledge, he would still be terrified.

I pray that we will have a manageable day. 


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Aug 24 2012

Operation Hope: Introductions

I have decided to call our new journey with Gavin Operation Hope.  I think the name speaks for itself.

So that’s that.

No progress was made today in the way of funding etc.  I have calls into Stark County Family Council but have not heard back yet.  I will be following up on Monday morning. 

I have to call the treatment facility and get some information as well. 

We haven’t said anything to Gavin and obviously won’t until the time is right.  However, when is the time going to be right?

I suppose we will have to rely on the experts to tell us the how and when to explain this whole thing,  not only to Gavin but also the other boys. 

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Aug 23 2012

The devil is in the details

I had a last minute meeting with Dr.  Reynolds this morning.  I called to schedule an appointment and they called me back and got me in within 45 minutes.  I can’t say enough good things about Dr.  Reynolds.  He’s been there for Gavin since the very beginning and for that I will always be grateful. 

Today’s appointment was not an uplifting one but instead was a strategic planning session.
We discussed everything for well over an hour. Residential placement is our only option. 

Once we crossed that line,  we talked about what the process involved and how extremely difficult it will be to aquire the necessary funding. The costs are basically broken up into 3 pieces.  They are as follows:

1) Treatment,  therapy,  groups, testing, medication etc.  This will all be covered by Medicaid,  as Gavin’s on SSI.

2) Schooling and education. This is not covered by insurance and is the responsibility of the local school district to pay for.  Now because Gavin is in a charter school, I’m not sure how that will work.  It might be an IEP thing.  We need more information on this.

3) Room and Board.  This is also not covered by insurance and is our out of pocket expense. When I spoke with the treatment facility last month,  I learned that for Gavin, room and board will run approximately $500/day. That’s right.  You read that correctly.  It will cost roughly $500 per day,  for Gavin to stay there.  That works out to be about $15,000 per month. 

This is why we have to locate funding.  It’s simply not possible for us to cover that amount.

In order to aquire funding we will have to work with an organization called Stark County Family Council.

We have worked with them in the past and completed all the requirements prior to our obtaining funding.  At that time,  we managed to avoid residential care because a medication change was made and it really helped. However,  all we did,  without knowing, was postpone the inevitable.

At this point,  I don’t know if we have to redo the entire process or if we will be exempt for past completion.

That is the single biggest obstacle we have to overcome.  We need funding and for that we may have to go through the process called Wraparound. It’s a fantastic program that puts us in contact with as many sources as possible.

Naturally,  we would like to avoid having to do this all again,  simply to expedite the process.
At this point, this is all I know. 

When I learn more,  I’ll pass it along.  My goal is to help shine a light on this process so that those coming behind us,  will have the information they need to make this less scary and overwhelming.

I want something positive come of all of this.

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Permanent link to this article: http://lostandtired.com/2012/08/23/the-devil-is-in-the-details/

Aug 23 2012

I wouldn’t wish this on anyone

Today the real work begins.  I have to make a huge amount of phone calls,  ranging from potential funding sources, doctors to actual facilities. 

I’m not looking forward to any of this but it has to be done. 

We are supposed to have school orientation this afternoon but that is never going to happen.  Lizze is a mess and honestly,  so am I. 

The really challenging part is to experience all we are feeling without letting them pick up on what’s going on. 

I would wish this one anyone.  :-(

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Aug 22 2012

Heartbroken

We have arrived home and I’m waiting for Elliott and Emmett to return. I was going to do a quick video blog but I just don’t have the energy.

We went over everything with two different doctors,  one being in charge of the entire clinic.

I’ve mentioned before that we are suspecting reactive attachment disorder.  That is what they believe is the case,  rather part of the case.

They said that because of the extreme trauma and abuse that Gavin endured at hands of his biological father and paternal grandmother/family at such an early age,  he never developed the neurological connections needed for things like a conscience (spelling?),  emotional connections etc.

He gave us this analogy.  “If you took a baby that was just born and covered one eye with a patch and left it on for two weeks,  the child would never be able to see out of that eye.

The reason for this is that because the eye was never used,  it never developed the neurological connections needed for it to ever work.

That’s essentially what they are saying is responsible for at least part of Gavin’s psychological issues.

They told us that we are at the absolute end of the road as far medications are concerned.  If these ever stop working,  there is nothing left to try.

The other problem is that there are literally too many problems.

How’s that for friggin irony?

He told us that true pediatric bipolar disorder is so incredibly rare that they have only ever seen 3 or 4 in the Cleveland Clinic. He said it’s so rare that it’s most likely going to be removed as a diagnosis for children all together.

He said that in most cases kids outgrow the symptoms in their late teens or early adulthood.  He said that you don’t outgrow bipolar disorder, so that means that most of the cases are something else altogether.

He said the same thing for the schizoaffective disorder as well. They know that it exists but it to is beyond exceedingly rare…………………………………………………………………….………………..

I’m having a really rough time writing get this.  My hands are shaking and I’m sick to my stomach.  For that reason alone,  I’m just going to cut to the chase.

Basically,  the only thing left to do is long term residential care.  He explained that the reality is that it’s Gavin’s only chance. There’s no fix for what is wrong with him.  The only thing we can do is a very,  very intensive,  in patient treatment….thing.  God I can’t even think anymore.  :-(

Look,  I’m sorry,  but I’m going to go for now.  I just can’t do this.  My heart has completely broken and I’m so angry at Gavin’s biological father and paternal grandmother.  This is their fault and I hate them more than words can say. For the record,  I’m not going to do anything stupid.  They’re simply not worth it. That doesn’t mean that I can’t fucking hate them though.

The boys are in bed and Lizze isn’t around at the moment so holding back the tears has become something I can no longer do.

Happy 34 birthday to me.. :-(

I’ll get back to you later.   Thank you for your support.  I love you all.

 

 

Permanent link to this article: http://lostandtired.com/2012/08/22/heartbroken/

Aug 22 2012

Today is a big day for the Lost and Tired family

In a few hours, we will be heading off to the Cleveland Clinic. This time for a psychiatric consult.

I’m not looking forward to 3+  hours in the car with a child that is very likely to puke.

Of course I’m hoping it doesn’t come to that, however, with Gavin’s autonomic issues, it’s very likely to happen. :(

Wish us luck as I think we are going to need it. Also please keep Gavin in your thoughts today because he’s miserable on these car rides.

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Permanent link to this article: http://lostandtired.com/2012/08/22/today-is-a-big-day-for-the-lost-and-tired-family/

Aug 19 2012

The coming weeks

In the coming weeks,  the Lost and Tired family has a great deal of traveling to do, in our quest to find answers. 

These trips will be to the Cleveland Clinic and they begin this coming week. 

Gavin, Lizze and myself,  will meet with a new psychiatrist on Wednesday.  This may or may not be a replacement for our current psychiatrist.  It’s more of a second or third opinion. When it comes to some of the decisions we have looming,  we want to be very sure that we are doing the right thing,  for everyone. 

We want to rule out anything being overlooked. 

Six days after this meeting,  we will return for Gavin’s skin biopsies and followup with the autonomic clinic and neurology.

This won’t be a pleasant appointment for any of us.  They are going to take skill samples from various areas and examine them to help isolated the specific autonomic disorder he has.  I think they said they would be looking for neuro fibrosis

The results of this test will help them to create a tailored genetic test to search for the exact cause.  Without this information,  there is not much we can do not help him.  Too many symptoms overlap and the water,  so to speak, is to muddy to see the whole picture.

Shortly after this appointment,  Lizze begins her journey at the Cleveland Clinic as well. 

Since she decided to seek a second opinion before agreeing to the occipital nerve block and botox,  her doctor seems to be refusing her any sort of pain relief.  The kicker is that this doctor had taken over her pain management as well.  Lizze has been out of everything to manage her pain and they are not issuing any refills. 

They have essentially left her high and dry. 

I’m going to be making a phone call in the morning of try and clear this up. 

When we spoke with the Cleveland Clinic nurse,  she said that Lizze is doing the right thing,  seeking another opinion before agreeing to that procedure. 

Patients have rights and are in control of their medical care.  If she didn’t want to have huge needles,  shoved into the back of her neck or muscles in her forehead paralyzed by botox,  without a second opinion,  she has that right.  For the record,  I completely support her decision. 

Anyway,  the appointments will continue for her.  She will be seen by rheumatology, neurology and the autonomic clinic as well. 

Our goal, is to get Lizze her life back.

This journey will take us well into 2013 and beyond but if it has even the slightest chance of helping her, it will be worth every effort. 

We also have a ton of stuff with Akron Children’s Hospital coming up as well,  but I don’t have those appointments yet.  Their on my to do list. :-)

This was posted via WordPress for Android, courtesy of Samsung’s Galaxy S III. Please forgive any typos. I do know how to spell but auto-correct hate me.

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Permanent link to this article: http://lostandtired.com/2012/08/19/the-coming-weeks/

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