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

Daily Archive: October 31, 2012

Oct 31 2012

The Leap of Faith: We’ve heard back from the @ClevelandClinic


Lizze received the call today from the Cleveland Clinic’s exclusive Pain Rehabilitation Program.

As it stands,  the earliest Lizze can get in would be towards the end of January. There are a few things that will have to be done first

Lizze has to complete her sleep study and have the follow up appointment with the sleep neurologist. They said that this absolutely must happen first.  This way they can rule out apnea.

We have figured out most of the expenses will be and here’s the break down as it stands now.

1) Cheapest Hotel is $70/night x 15 nights= $1,050.00…..

2) Various textbooks will be about $50.

3) Food (breakfast, lunch and dinner) is out of pocket.  Total expense unknown.

4) If commuting, fuel will run about $200+/week x 3 weeks= $600+.

5) The cost of the program itself is $10,000/week x 3 weeks= $30,000.

6) Miscellaneous expenses are unknown.

7) Several trips to the Cleveland Clinic for additional evaluations prior to knowing what insurance will agree to cover if anything. Expenses for that are unknown.

image

We don’t yet know if insurance will cover the actual program itself.  They are going to try to get it approved and call us back

Having said that, even if insurance does cover the program, everything else is out of pocket.   We aren’t quite sure how this whole thing is going to pan out. Right now we are proceeding as though this is going to happen and getting everything done that needs to get done. 

Lizze has her sleep study next week and the follow up appointment a couple weeks later. 
The program does have a waiting list and is on a first come first serve basis.  Basically, whoever can pay first, gets in first.  That sucks but it’s understandable.

On the positive side, this should happen right around tax return time and we can sink our tax return into this.  The timing may work out to our advantage.

So far, that’s all we know.  I’m hoping to gain more insight over the coming weeks as we try to put this whole thing together. 

I’m not going to let this deter me from getting Lizze the help she needs.  :-)

Permanent link to this article: http://lostandtired.com/2012/10/31/the-leap-of-faith-weve-heard-back-from-the-clevelandclinic/

Oct 31 2012

Today’s #Autism Victory: The tag


I wanted to share a small victory that occurred today.  This particular victory was won by one Mr. Emmett John. Not only did he wear a shirt for most of the day, but he wore a shirt with a tag still firmly in place.

As many of you know, a lot of kids on the #Autism spectrum have sensory issues.

One of the most common issues I have experienced with my boys is the dreaded tag. Many kids, including my own, can’t stand the way the way the tag feels on their skin.

The fact that Emmett is not paying attention to the tag today is a pretty big accomplishment.

Typically, Emmett won’t even touch clothes if they still have a tag. I’m really proud of Emmett.  He had a rough day but this was very clearly the silver lining.

image

Permanent link to this article: http://lostandtired.com/2012/10/31/todays-autism-victory-the-tag/

Oct 31 2012

The double edged sword


Call me crazy but I was expecting things to get better, faster, once Gavin was out of the house. I knew that things wouldn’t be better right away, I guess I was just hoping. 

As it stands, Gavin’s been gone for almost 2 weeks and things are still not going well on the home front. 

We met with Dr. Patti last night and talked about that very thing.  She said that unfortunately, this is not something that’s going to be fixed overnight.  This is very likely going to take a long time. 

To show you just how traumatized Lizze is,  the very thought of him coming home puts her in the fetal position, sobbing.

Gavin returned home briefly yesterday morning and that very brief return, less than an hour, knocked the boys off kilter.

This is such a horrible position to be in because, on one hand we miss Gavin but on the other hand, having him home destabilizes the entire family. This is the very definition of dammed if you do and dammed if you don’t.  This sucks.

The overall stress in the house has been diminished in Gavin’s absence.  However, the individual struggles the other boys have, now shine though. 

Before, everything was buried underneath the violent tantrums Gavin had, on an almost daily basis. 

Without those tantrums being present, we are much more aware of the other fires that need to be extinguished,  and there are many.

Gavin will be returning home for a few hours on Friday and that’s going to be tough on everyone.

This whole thing is a double edged sword.

Permanent link to this article: http://lostandtired.com/2012/10/31/the-double-edged-sword/

Oct 31 2012

Perfection


I feel like we’ve come full circle with Emmett in many ways.  However, the most prominent is his return to extreme levels of perfection.

Everything in Emmett’s life must be perfect. If it’s not he screams.

Throughout each and every day, I’m constantly having to address this with him.  I try to reassure him that everything is okay and attempt to help him work through it. 

Unfortunately, there is literally nothing that we have found that helps.  Anymore, much of the day is spent tripping over words, trying not to say the wrong thing and set him off.

We’ve tried sensory processing things like, massage or joint manipulation. 

I can’t begin to explain how overwhelmingly frustrating this is, for all involved. Emmett’s miserable and the constant screaming is unbearable, especially for Lizze.

I don’t really know now to help him because there doesn’t seem to be a rhyme or reason to these bouts of perfectionism.  I’m sure it’s part sensory and part control but I just don’t know what’s causing this return to perfectionism.

Permanent link to this article: http://lostandtired.com/2012/10/31/perfection/

Oct 31 2012

Thank God schools in session


Emmett woke up this morning in the worst mood possible. I don’t know what the heck is going on with him.

All I can say is thank God there’s school today.

Permanent link to this article: http://lostandtired.com/2012/10/31/thank-god-schools-in-session/

Oct 31 2012

Tips for those long waits at the doctors


I want to focus on getting the #Autism Help Forums busy once again and so I wanted to share today’s topic. In the #Autism Help Forums, I call this an Ice Breaker. It’s meant to bring in the lurkers and facilitate conversation. Please follow the link below and sign up for free and join the conversation. You can post pictures and videos and otherwise express yourself in more ways. http://lostandtired.com/autismhelp/showthread.php?t=21 Tips for those long waits at the doctors

Permanent link to this article: http://lostandtired.com/2012/10/31/tips-for-those-long-waits-at-the-doctors/

Switch to our mobile site