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

Tag Archive: status

Mar 21 2012

When you have more questions than answers


I’m feeling quite overwhelmed as of late.  We keep receiving more and more bad news.  I mean,  bad news is probably the wrong word choice but it’s pretty darn close.

The latest addition to the Lost and Tired family symptoms list is now seizures. I was positive that I was going to get the EEG results back for both Gavin and Elliott and everything would be normal.  I wasn’t prepared to hear that they are having seizures.

Honestly, I don’t even know what to do with that information.  The only experience I have with seizures is as a paramedic. 

I always say that I hate going to an appointment looking for answers and end up with more questions. That has been the status quo for as long as I can remember. Yesterday was one of those rare occasions where we actually got answers. 

However,  we got just enough information to worry.  We simply don’t know enough yet and so more tests are going to be needed.

I have to say,  the most frustrating part for me is that we still don’t know why any of this is happening in the first place.  I have no health problems, aside from my cholesterol is out of balance.  Lizze has tons of health issues but most of these are caused by long term stress and not something that would necessarily be passed down to the kids.

Why is it then, that they have all these bizarre health issues?  We’re not even talking common disorders.  I mean,  some of these issues are very rare.

I just don’t know what to do at this point.

Seizures are the newest problem that we have to contend with.  They have likely been there all along,  just undetected.  We were blissfully ignorant for all this time and now that we know about the seizures,  we are worried.

I don’t think there are enough. Antidepressants in the world to even take the edge off.

**Thanks for reading**

       -Lost and Tired

Please join our Community Autism Support Forum

MyFreeCopyright.com Registered & Protected

Posted from WordPress for Android so please forgive any typos as auto-correct and I don’t see eye to eye. :-)

Permanent link to this article: http://lostandtired.com/2012/03/21/when-you-have-more-questions-than-answers/

Jan 15 2012

I screwed up


I’m here to tell you that I’m far from perfect as I make mistakes quite often.

This morning,  I was smacked in the face with another mistake I made.  Gavin is out of refills on his Lithium and I was just at Dr.  Reynolds office a few days ago.

Dr.  Reynolds even made it a point to ask me if I needed any refills for Gavin. I thought we had refills left on the Lithium but I was very wrong.

This is day 2 with Gavin off his mood stabilizers.  Thankfully,  we can get them called in on Monday and at least Gavin in doesn’t have school tomorrow. 

I’m not sure if a few days off his meds will throw him off course or not but fact that I even have to ask that questions frustrates me.

Let this be a lesson to one and all.  Make sure to check out the refill status prior to going to an appointment.  You don’t want to be in a situation where your child doesn’t have his much needed medication because of a simple oversight.

Posted from WordPress for Android

Permanent link to this article: http://lostandtired.com/2012/01/15/i-screwed-up/

Dec 29 2011

Not a good day


This is not a good day. Gavin has been all over the place and is continuing to drive me crazy. During one of his recent meltdowns, Gavin cracked his bed frame. Today however, he finished the job and actually broke it.

For safety reasons, Gavin will once again have a mattress on the floor. No more bed frames in the foreseeable future for him. This pisses me off because now I have to pull the rest of it apart and haul it downstairs and out to the trash. This is one of the big reasons why Gavin’s room has be pretty stripped out. Everything in there just gets destroyed. I don’t know exactly how he broke it today, but I do know that if he hadn’t been kicking it during his meltdowns it wouldn’t be broken right now.

He doesn’t seem to care either or at least he’s not upset by it.

I have to have him to Dr. Reynolds in 2 hours for another consult and medication check. We also need to see if we can figure out what is wrong with him right now. He has been lethargic and doesn’t seem like himself among other things.

I don’t know if we have hit another notch as he continues to experience regression. If so, this may become the current status quo.

Emmett has been refusing to wear his underpants today and so that has been tons of fun. I don’t know if he’s feeling ok right now but he isn’t running a fever at the moment.

As the time ticks down towards Gavin’s appointment this afternoon, Lizze has taken ill. She has been down for the better part of the day. This makes going to this appointment a much more complicated process. If she doesn’t feel better soon, I will have to take all the boys with me. That will translate to getting nothing accomplished while I’m there. Instead, I’ll be chasing my little minions around the office.

Elliott’s DSi is broken. It no longer goes to sleep when you shut it. All you hear is Mario screaming something at you until either, the DSi is completely powered off or the battery dies. The problem with doing that is that apparently the power button doesn’t work anymore. I might get it powered down but it might not turn back on. No problem, I bought the extended warranty that covers it from anything Elliott could throw at it. However, the one thing it doesn’t cover is the removal of the serial number sticker from the bottom of the device. Wouldn’t you know it, Elliott pulled that off many months ago.

I called Best Buy and explained the situation and they said what I expected they would. They can’t replace it without the serial number. As luck would have it, unlike other devices, there is no other way to access the serial number without the sticker. Even if I could get the damn thing to turn on, there isn’t a screen or option to display the freaking serial number.

Doesn’t seem very well thought out and is subsequently causing me a great deal of grief.

I know there was more I wanted to vent, however, my brain is going on strike and shutting down. All I have to do is make it through this afternoon and I will good until tomorrow, when I take Gavin back to Akron Children’s Hospital for his 6th IgG infusion.

I love my family but I’m not loving the way things are going at the moment. I’m gonna try and become the Little Engine That Could, and keep telling myself, “I think I can, I think I can”.  :-)

 

 

 

 

Permanent link to this article: http://lostandtired.com/2011/12/29/not-a-good-day/

Nov 26 2011

Frustrated Incorporated


I was to vent a little bit right now, so please bare with me.

Right now I’m really frustrated with Gavin because of his recent relapse into sexually aggressive behaviors.  I’m once again having to protect his little brothers from his unwanted advances.  Right now,  he very into kissing and so he always seems to be looking for an excuse to kiss one of his brothers. 
Tonight,  Lizze caught him making out with a Mario plush doll,  which of course,  lead to Emmett doing the same thing. 

I’m ticked off because I’m constantly having to make sure Gavin is supervised when he is around his brothers.  This makes things so much more difficult because they can no longer just go upstairs and play.  Like I didn’t already have enough to worry about.  We have taken yet another step in the wrong direction. 

The method that seemed to work the last time is not something I want to have to repeat. Gavin doesn’t respond to the softer approaches and he rarely learns from his mistakes, likely because of his memory issues.  However,  after having met with all our experts and extensive trial and error,  we found one approach that seemed to be effective.  The problem is that it involves embarrassing Gavin,  and that just feels wrong.

However,  with that said,  it does work.  Please understand that Gavin is not a typical child.  Between the Autism, Schizoaffective disorder and sociopathic tendencies, it’s extremely difficult to address these types of behaviors.  We have little choice but to employ more radical and outside of the box type responses to this sexually aggressive behavior.

Basically,  when Gavin touches someone in an inappropriate way,  we are supposed to embarrass him in front of everyone.  Believe me,  I know how horrible this sounds.  I absolutely hate the idea of having to do this again.  Truth be told,  I’ve cried in the past after having to do this.

Despite my lack of enthusiasm about this particular approach, we have to break this behavior.

This is such a dangerous road for him to go down again.  In the past,  he has only targeted family and didn’t seem to concern himself with gender, as everyone was a potential target.

What happens if he does this to someone at school or at therapy?  I’m not sure the police are going to care that he is Autistic when they are responding to a sexual assault. Sexual assault has a pretty broad definition.  He would certainly be kicked out of school for something like this and I wouldn’t blame them.  They have to protect the other students and clients.

We have discussed with all the doctors,  his past history of sexual abuse.  Many of them testified in court, trying to defend Gavin.

The problem is that Gavin was so young and he is unable to recall those events.  Just because he doesn’t remember, doesn’t mean it’s not a problem, or not affecting his behaviors.  He has been in therapy for most of his life and nothing seems to help. This is so complicated because of his developmental status and past history of abuse. 

However,  at the same time,  it’s pretty goddam cut and dry.  No one will ever touch any of my children,  in that way. I don’t care who it’s and what their motives are,  it will not be tolerated.

The fact that I have to protect Elliott and Emmett from Gavin,  makes no difference.  I would do the exact same thing for Gavin and in fact I have already. 

I’m angry because someone is essentially assaulting my two youngest,  and I’m resentful because it’s my oldest that is doing the assaulting.

What am I supposed to say to Elliott and Emmett?  I have taught them that no one has the right to touch them,  especially when it makes them feel sick in their tummy or as Elliott put it “creeped out”. I’m slightly relieved that Elliott came to me when he felt uncomfortable…well actually very relieved. 

We are going to have to talk to his teachers again and let them know to keep an eye on him. 

In the end, we have to protect our children,  even if it’s from one of our children. This is a very sad and nauseatingly ugly truth.

Until next time……   

Permanent link to this article: http://lostandtired.com/2011/11/26/frustrated-incorporated/

Oct 21 2011

Somethings wrong


Gavin is home and somethings wrong.  We are locating a place to take Emmett John and then we are off to Akron Children’s Hospital. 

Gavin has an altered mental status and can’t seem to maintain his balance very well.  The school was pretty freaked out and that is very concerning. 

Somethings just not right.  I don’t know how serious this is but something just isn’t right. 

- Lost and Tired

Posted by WordPress for Android via Samsungs Epic Touch 4G (provided to me at no charge by Sprint) without the use of proper editing tools and disadvantages of a bastardized version of auto-correct. So please forgive the spelling ;-)

Please Vote for Lost and Tired (just click the link) and help me spread Autism Awareness. Everyone can Vote once a day :)

MyFreeCopyright.com Registered & Protected

Permanent link to this article: http://lostandtired.com/2011/10/21/somethings-wrong/

Oct 06 2011

Life Interference


Today we had Gavin’s first real Life Interference as a result of his monthly antibody infusions. He was supposed to go on a class field trip today. They went horse back riding at a ranch that works with the special needs community. Gavin was so excited and we failed to realize the conflict until last night.

Can you say disappointment?

Gavin took it in stride though and for that I’m very proud of him. I feel so bad about this because he was really looking forward to this. This was really the first time Gavin has had to miss something he was this psyched about, since we found out the status of his immune system. I did my best to make today as special and fun as possible, and all things considered, I think it went well.

Do you folks ever have things like this happen as a result of your child’s health or condition? How do you help them to cope with the feeling of loss?

I think it would be great to hear from anyone with experience in this area…

Permanent link to this article: http://lostandtired.com/2011/10/06/life-interference/

May 26 2011

Let’s catch up…..


Let’s get caught up on Lizze’s current status and condition, post day 2 of the headache infusion. Right now it’s a lot tougher to keep caught up on this blog. I have 3 sick special needs kids and my wife having a 3 day long procedure to break her almost 2 month old migraine. She came home yesterday about 1:15pm, sick to her stomach from the meds and looking pretty rough. She slept for awhile until I had to run to the grocery store.

Basically, it was explained to us that it would have taken many months of oral medications to get the levels to where they will be after the third and final infusion. I would imagine that takes it’s toll on the body. But the process is designed to break the migraine that has otherwise been untreatable. So drastic times call for drastic measures. The results of day one: migraine went from 8/10 to 7/10.
Day 2 brought similar results at a similar price. Migraine meds made her pretty sick. Results from day 2:
Migraine went from 7/10 to 5/10.
Thursday is the third and final infusion. The goal is to get of down to a 1 or a 2. Hopefully everything will work.

 

Permanent link to this article: http://lostandtired.com/2011/05/26/lets-catch-up/

Older posts «

Switch to our mobile site