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

Tag Archive: special needs parenting

Aug 28 2013

The Jury’s back and the verdict is in

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The letter from the Cleveland Clinic made it to the Jury commission yesterday.  We were waiting to hear back from the judge to find out if Lizze would be excused from jury duty because of her health issues.

This morning, the judge has officially excused her from jury duty.

Ironically, Lizze actually really wanted to sit on a jury because it’s something she’s always wanted to do. Unfortunately, her health won’t allow her to partake in the jury pool this particular time.

Anyway, she’s not going to be held accountable for not being present this week.

Thank you to the Cleveland Clinic for helping too ensure her wellbeing.

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Aug 28 2013

Operation Hope: Meet Gavin and learn about his challenges

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I thought that it might be a good idea to bring everyone up speed on everything that is going on with Gavin. I’ve got a ton of new readers (thank you) and I think now would be a good time to get everyone on the same page.

Operation Hope, is what I call our mission to help Gavin overcome the obstacles in his life. This includes finding any and all ways that we can slow the progress of, cure or reverse his mounting list of very, very serious and life threatening health issues.

Gavin is 13 years old chronologically but 4 years old developmentally, in many but not all areas.

Gavin loves Lego’s, video games, Sonic the Hedgehog, drawing, writing, reading and going to school. He’s very creative and can be very kind and polite. Gavin’s a truly amazing kid for a million reasons but what I truly admire about him is how he faces the challenges you’re about to read about and never complains.

I do to plan on going into much detail about these issues because you can easily find information on this site that will provide you with more information.

I think I’ll list his current mental health challenges first.  Keep in mind that these are all confirmed diagnoses, by 3 different sources.

Autism (formally known as Aspergers)
Bipolar Disorder
Schizoaffective Disorder
Reactive Attachment Disorder (RAD)
Conduct Disorder
PICA (not sure where this actually fits)
Cognitive Regression
Developmental Delay (especially emotionally)

His medical issues are exceedingly rare, to the point where even hospitals like the Cleveland Clinic have never had a child like Gavin come through their doors.  In fact, his autonomic specialist at Cleveland, has only treated 3 kids, worldwide, including Gavin, for his particular autonomic dysfunction. We are currently working on getting out to John’s Hopkins.

Asthma
Epilepsy
Primary Immunodeficiency
Significant Autonomic Dysfunction
Neurological Degradation (yet to be identified)
Loss of motor control (effecting speech and movement)
Ataxia Telangiectasia Like Disease (this is a pending diagnosis)
Significant Memory Issues (especially short term memory)

As you can imagine, this is very, very challenging, not only for Gavin but for us as his parents. 

Right now we have hit a wall that has sorta derailed our almost decade long quest to help Gavin.  We have gone great lengths to not only identify what he’s facing but educate ourselves on every conceivable possibility.

Our focus is to identify whatever we can because that’s the best chance to address the cause and not just the symptoms.  Unfortunately, this has proven to be quite challenging on many levels. 
At this point in our journey, we have reached a place where no one really knows what to do.  Everyone involved however, agrees that our next step needs to be John’s Hopkins.  At the moment, I’m still trying to get any and all records, transferred so John’s Hopkins can decide if making the out of state voyage will be of any benefit to Gavin.

The car ride itself presents challenges. 

Even if we had the funds to physically cover the cost of the 6+ hour drive, Gavin doesn’t do well in the car, thanks to the autonomic dysfunction. The trip itself could send him into a crisis.

Everything we do for Gavin is carefully thought out and planned ahead of time whenever possible.

Thinking outside of the box is something that we have come to rely on because a conventional approach to his physical and mental health  challenges, simply doesn’t work.

I suppose that this is probably enough information to give you a better understanding of the challenges Gavin faces in life and we face in raising him. You can always read through the archives, shoot me an email or simply ask your questions in the comments below. 

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Aug 27 2013

Frustrated, Worried and Scared

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We haven’t really had any serious behavioral issues with Gavin lately.  He’s been doing really well making better choices and we have been letting him know that.

The problems we have been having seem to be a result of continued neurological degradation.

Gavin’s  been having a lot of pain today and we aren’t really sure what’s going on.  It almost sounds like reflux but reflux hasn’t been an issue for a very long time.  It’s frustrating because God live him, he isn’t capable of giving us accurate, reliable information about anything really. This is especially true when it comes to his health.

Tonight, we gave him a small glass of milk to try and figure out if it was reflux related.

We were very, very clear with him and we said sip slowly. What does he do? He gulps half the glass down.  Once again, we said Gavin,  sip this slowly DO NOT gulp this down.

What does he do again? He gulps the rest of it down.

I don’t know whether to be frustrated, worried or some combination of both. 

Is he even capable of following directions anymore or is he messing with us (think RAD type situation)? I honestly don’t know anymore.  Gavin’s always been extremely intelligent. In fact, we used to say he was scary smart.

That’s no longer the case. There quite clearly is something going on and it seems to be sapping away his cognitive abilities, as well as his physical abilities.

I swear to God that Gavin has the short term memory of a goldfish anymore.  Every time a goldfish swims to the other side of the tank, it’s experiencing it for the first time because it doesn’t remember. When we told Gavin to sip the milk, did he forget already…both times?

This is frustrating regardless because I’m so tired of repeating myself, over and over again. 

At the same time I’m worried because if this isn’t him just messing with us or being difficult, we’ve got big problems. At this point, my gut says that this isn’t a RAD thing.  I believe that this is the worst case scenario and that scares the hell out of me. 

The worst case scenario is that what’s happening to him is what we’ve been told may happen.  He is regressing and is losing abilities that he very likely won’t be able to relearn. 

This goes beyond regression because loss of neurological ability and motor function is a physical symptom of whatever he has going on that we have yet to be able to identify.

I hate everything about this. I hate that we can’t fix this for him.  I hate that we have no idea just how bad this may get. I hate that no one has ever seen anyone like him because that limits everyone’s ability to help. I hate that this is very likely a one way trip.  I hate that we are losing him and it seems like we can’t help him.

This site is managed almost exclusively via WordPress for Android. Please forgive any typos as autocorrect HATES me. 😉

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Aug 27 2013

Walked out of the doctors office today after waiting 2 hours

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We never did get to see Dr. Reynolds today.  However, I did manage to get all the scripts and refills while we sat there waiting for 2 hours. 

It was absolutely ridiculous and I finally pulled the plug and we walked out. 

Dr. Reynolds came out and apologized for everything.  I’m pretty upset but I harbor no ill will toward the good doctor or any of his staff.  In fact, I can’t say enough positive things about Dr. Reynolds.

Anyway, we got what we came for and that’s what really matters. 

We’ll need to get some face time but all the meds are in order and that’s what’s most important right now. I do need to say that Gavin, while completely engrossed in his tablet, did awesome for that two hours.  Great job Gavin and thanks Mom for the last minute pickup.

This site is managed almost exclusively via WordPress for Android. Please forgive any typos as autocorrect HATES me. 😉

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Aug 27 2013

I hate waiting at the doctors office

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Been sitting at Dr. Reynolds office with Gavin for over an hour now.  My Mom drove us cause of the bad tire I just discovered on the van.

Gavin’s quietly playing on his tablet but I but it gets to be ridiculous after awhile. 

We always call ahead to find out about any waits, so we can adjust our schedule accordingly.  We did so today as well and everything was running on time and without delay.

Of course, as soon as we get there, the schedule goes downhill and we are once again waiting. 

Waiting is something that happens quite often for us and generally speaking, it’s not that big of a deal. However, I seem to be running short on patience today and if this appointment wasn’t so important, I’d walk out and reschedule. 

Okay, I’m done complaining now.  Thanks KS for listening. 

This site is managed almost exclusively via WordPress for Android. Please forgive any typos as autocorrect HATES me. 😉

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Aug 27 2013

The jury’s still out on whether or not we have a problem

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I spoke with the jury commission this morning about Lizze’s situation. I explained all that we have going on as well as accept responsibility for not doing this last week when we sent in the paperwork.

The woman on the phone was very nice and said that I need to have something faxed to them before noon.. 

If that happens, she will present the letter to the judge and the judge can then excuse her…..hopefully.

While this is something we don’t usually talk about, one of the reasons Lizze is sick all the time is because of severe IBS and gastroparesis. She’s had these for years and both are made worse by stress. I will spare you any more details but suffice it to say, it’s pretty bad.

The ironic part is that while her local doctors couldn’t be bothered to help her, the Cleveland Clinic made this happen right away.  The aren’t enough words to say just how amazing the Cleveland Clinic is.

I’ll let you all know what happens as soon as I do.

This site is managed almost exclusively via WordPress for Android. Please forgive any typos as autocorrect HATES me. 😉

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Permanent link to this article: http://www.lostandtired.com/2013/08/27/the-jurys-still-out-on-whether-or-not-we-have-a-problem/

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