I touched on this a little bit yesterday.  I think that, in general,  special needs parents, myself included, carry around a great deal of guilt. More often than not,  the guilt is not warranted.  That doesn't make it any easier to cope with though. I carry around so much guilt for things that I know I had no control over.  Rationally,  I understand that but it doesn't make the guilt go away. I'll give you an example.  I hear all the time from people how I'm doing such an amazing job and what a wonderful father I am.  However,  the truth is that I don't see that.  I tend to focus more on what I do wrong instead of what I do right. I compare my short comings to other…

As you know,  Elliott is in the Hamptons, visiting my little sister.  Although,  I guess she's not that little anymore,  she's Dr.  Kate Gorski. Anyway, today Elliott, my parents, Kate and my Grandmother went whale watching.  Although they didn't see any whales,  Elliott had the time of his life. You can see it in his eyes.  I just wish I was there to see them firsthand.  :-( He told my parents that this "was the best trip ever".  :-) I'm so happy for him because he needs this to hopefully unwind and finally relax.  His poor little body is so full of anxiety all the time. Between Gavin’s psychological warfare and Emmett’s bullying,  Elliott is being asked to cope with things, no 6 year old should ever have to. He…

Tuesday is a huge day for the Lost and Tired family.  Gavin returns to the Cleveland Clinic and Elliott returns home from the Hamptons. Gavin is scheduled for minor surgery at 10 am Tuesday morning.  This procedure involves taking various skin biopsies from various parts of his body and using them to tailor a very specific genetic test. They will also be looking for neurofibrosis,  if I recall correctly. The procedure lasts about 20 minutes and they made special arrangements to do it Tuesday.  The doctor that does this doesn't normally do this procedure on Tuesdays. After that we will have about 5 hours to kill before his next appointment. The second appointment will be with the autonomic specialist.  This is crucial because he will play a huge role in…

Gavin is teetering on the edge of having to go to the hospital.  He just got home from hanging out with Grandma and most likely over did it.  The really frustrating part of this is that there is really no way to know what over doing it is for him. It seems as though it's a moving target sometimes.  Right now his heart rate is resting at about 140 bpm.  That's too high for a resting heart rate to be.  That is referred to as a tachycardia.  Right now we have Gavin hydrated and resting.  Hopefully that will be enough to stop this from progressing into a full blown autonomic crisis.  This was posted via WordPress for Android, courtesy of Samsung’s Galaxy S III. Please forgive any typos. I do…

To vaccinate or not to vaccinate,  that is the question on many parents minds. I find this sad and scary that we are now having to worry about things like Whooping Cough once again. As you know,  I'm not anti-vaccine but I'm aware of the reality of vaccine injury.  While I don't believe that it's very common,  it does happen and it's tragic.  Think what you want but it is real and my heart goes out to call those affected.  Having said that, because of the mass hysteria surrounding vaccines,  we now have to contend with things like Whooping Cough and Measles once again. Vaccines are most effective when the majority of the population is vaccinated. Even if vaccines were scientifically proven to cause #Autism in some children,  it's certainly…

It's not very often that Lizze cries. However,  her pain has been so bad lately that it's become a more frequent occurance. It breaks my heart to see her in such misery,  especially knowing there is nothing I can really do.  She's at the point where her bottom lip is going numb and she's smelling things that no one else can smell.  I think that has to be some type of phenomenon related to the migraine.  Having said that,  it's very disturbing for her to experience these things. The next step for us to take is the Cleveland Clinic.  That journey begins next month,  with the first of several appointments. My hope is that she finds some desperately needed relief of which she so rightfully deserves. For now,  her neurologist…

I wanted to update you on Gavin's current behavioral status.  I'm pleased to say that he's been doing pretty well.  At least as far as the tantrums go. We are having less serious issues right now like not listening. He's not following directions and seems to just do what he wants,  regardless of what we say. We are choosing our battles very carefully right now. There isn't a great surplus of energy lying around to deal with the tantrums that would result from holding him accountable more often. Right now it's more about survival..... 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. Please join our Autism Help Forums Look for "Autism…

Have any of you seen Emmett?  I walked out of the room and when I came back,  he's nowhere to be found. ;-) 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. Please join our Autism Help Forums Look for "Autism Help" app at the Google Play Store