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

Tag Archive: moment

Dec 18 2012

Autonomic Crisis: Waiting to be seen at @AkronChildrens Hospital


We have actually been for awhile now and are still waiting to go back.  It appears that they are pretty busy at the moment

We have to wait for a room with a monitor.

Gavin‘s slowly become more stable as time goes on.  Hopefully we’ll get back there and we can figure out what’s going on. 

We had to miss Elliott’s promotion. I saw him as he was going do to the dojo and I let him know that we were going to have to be with Gavin at the hospital and he was really disappointed.  He didn’t want to be doing the promotion in the first place, so this really sucks. 

Thankfully my parents are there with Emmett to cheer him on and take pictures.

I friggin hate this. 



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Dec 12 2012

Grocery shopping for your child with food allergies


Meeting with the Nutritionist today was very informative.  There is a lot that we are doing right and quite a bit we need to address

Elliott is losing weight and we need to address that.  The problem is that he is anxious, depressed and has aspergers with a plethora of sensory issues.  Getting him to eat on a good day is hard enough. 

However, enter a serious food allergy and now meal times become even more of a challenge than they already were..

We hit the grocery store on the way home, armed with knowledge and a wealth of new information.

All I can say at this point is holy crap.

This isn’t going to be easy or cheap. I’m feeling pretty overwhelmed at the moment.

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Dec 12 2012

Meeting a Nutritionist at @AkronChildrens today


Lizze and I don‘t our best to be proactive parents.  We like to head things off before they can become a problem, at least whenever possible. 

We also never shy away from seeking get out additional help, especially when it comes to our kids.

Having said that, we will be meeting with a nutritionist at Akron Children’s Hospital todayLizze and I spoke with our immunologist and they made the referral right away.  In fact, they actually have a nutritionist in the office every Wednesday for this type of thing. 

We’re hoping to get some guidelines and ideas on how to ensure Elliott is meeting go his nutritional goals, while at the same time, being on a pretty restrictive diet.

At the moment, Lizze and I are fully aware that we are in over our heads and welcome the guidance of a professional.

I’ll let you know how everything goes.

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Nov 26 2012

Elliott’s tree nut allergy journey: Working with the school


Lizze spoke with the school this morning about Elliott‘s new diagnosis. They we’re very cooperative, as I knew they would be.  They also supported keeping him home until we get everything figured out.

There is paperwork and they need their own set, as in two, epipens. These would stay at the school at all times. 


We have to call the doctor about this because we only have two and those are for home.

We spoke with the pharmacy and it’s $400+ for two more pens.  Insurance will only cover 1 script per month.  I’m not sure at the moment, how we’re gonna work this out. 

I think the immunologist will have to fight for it, otherwise, how is he going to return to school? I mean, we can’t give them his epipens from home because what happens if something happens and he needs them? We also can’t send him to school without them for the same reason.

This is one of those rock and a hard place type of thing. 

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Jul 15 2012

Living in the moment


Seeing pictures of my boys snuggling and sleeping peacefully is quite deceiving.  Emmett has been screaming,  pretty much since the moment he woke up,  which incidentally, was really early.

I sold my Vita on ebay and I was thinking about maybe, taking the boys to see the new Ice Age movie this morning.  I’m probably insane for even thinking that but I want the boys to have some fun. 

These hospital stays are difficult on them as well.  Their schedule is thrown out the window and they haven’t seen Lizze in like 4 days.

They are worried about Gavin and miss him dearly.

My thought is that the movie would be a nice distraction for Elliott and Emmett.  While they probably won’t sit through the whole thing,  I owe it to them to at least give them the opportunity. 

Selling the Vita on ebay,  hasn’t saved us.  It’s not going to make the mortgage, utilities or car payment, current.  However,  I can still use some of it to help the boys escape this situation for a little bit today.

Is this the most responsible decision?  Probably not. 

However,  when your a special needs parent,  these opportunities are few and far between. Sometimes responsibility has to take a back seat to living in the moment with your kids.  Besides,  as I said,  this wouldn’t make a dent in anything else.

**Thanks for reading**

       -Lost and Tired

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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 is working against me.

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Jun 12 2012

The Lighter Side of #Autism: Just the 3 of us


Today,  we had a really quiet,  peaceful and memorable moment.  Both of the younger boys wanted to snuggle Daddy at the same time.  Typically,  this can lead to a fight but they did really well and that’s awesome.  These moments are definitely much lighter than many others.  I live for these moments because it reminds me of when they were babies and we didn’t know any of the things we know own now.  It was just peaceful moments, find with hope for the future. 


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Jun 09 2012

Progress in the struggle for power


Something that I think I had made pretty clear,  but was missed by some people is that Gavin has control over these meltdowns.  These are not the typical meltdowns you in any Autistic children. The reason I can say that is because Gavin has the ability to turn the meltdown on and off,  whenever he feels the need.

When Emmett has a meltdown,  it’s typically sensory overload and it pretty obvious because he is inconsolable.

Gavin on the other hand,  has the meltdowns because he’s facing the consequences for a choice he has made. Many times I have proven he has control because he basically will stop,  if and when he gets what he wants. He can also stop his fit,  long enough to move himself away from something he values,  so as not to damage it. 

If he was truly out of control,  this would not be possible.

I mentioned earlier that I was taking a more aggressive approach with Gavin and his meltdowns.  Basically,  if he has a meltdown,  I will take something that he values,  away from him. If he doesn’t have control than this would have no impact.

Having said that,  it’s already working.  Gavin got into trouble this morning and wound up for an explosive meltdown.  However,  I reminded him that if he did,  I would take his teddy bear. Guess what,  he immediately shut it off. 

My hope is that this trend continues and we can quash this behavior ASAP.  Otherwise,  we will be looking at some type of inpatient care,  if that’s even possible.

For the moment,  I’ll take whatever I can get and this was a positive result.

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