Returning to the @ClevelandClinic in the morning

This week begins our return to the Cleveland Clinic.  Lizze has moved all her specialized care from Canton to Cleveland.  This was done because she was receiving inadequate care locally.  We will begin a sting of about half a dozen appointments in the morning with a return to the Cleveland Clinic's Headache Clinic. We are still waiting for insurance approval in order her to get into the Chronic Pain Rehabilitation Program.  Currently, she's on the waiting list and we don't expect her to gain entrance for at least another month, even if it's approved by insurance. Tomorrow's appointment will be a medication check and removal.  She needs to be off all her preventatives  because they are what is likely causing the migraine cycle.  We need to know now to safely…

0 Comments

Sometimes I hate the holidays

I'm generally a happy person but sometimes I really hate the holidays.  Those sometimes tend to be when we begin experiencing all the fallout from all the overstimulation and excitement. I mean, it never fails.  No matter how hard we try to avoid this, not only for our sakes but for the sakes of the kids as well, it seems an inevitable fate. Right now, Elliott and Emmett but especially Elliott, are tippy toe dancing on my last nerve.  I love them but how crap are they driving me crazy right now.  Elliott is literally whining about everything and refusing to eat.  He's also super clingy right now as well.  Emmett is very easily frustrated and also seems to relish pushing Elliott's self-destruct button. Lizze is just physically so far…

0 Comments

#Autism: Please don’t be afraid of us

Chloe is a very good friend of mine, who just happens to be living with Autism. Chloe has provided me with a great deal of invaluable insight that has helped me to better understand my own kids. I value her opinion greatly and I very much support the message she is delivering in the following post. :-)   My name is Chloe Rothschild. I am a young adult who has Autism. I write for www.special-ism.com. I advocate for Autism. I want to help people understand Autism better. Rob asked me if I wanted to write a guest post and of course I said I would be happy to. J   The shooting in Connecticut was shocking, heart breaking, awful, horrible, tragic and so much more. When I first heard about the…

10 Comments

Operation Hope: Gavin leaves today

At some point today, Gavin will be moving back into his grandparents house. He been home just over a week and that was to much. Thankfully, Lizze's parents welcome him with open arms. If that weren't the case, I don't know what we would do. While it was nice to have our family back together in theory, in practice it just doesn't work.  At least not right now.  The goal is still to get him into residential treatment so he can learn how to more appropriately interact with those around him. 

4 Comments

Have you ever heard of Macular Holes? Lizze has them.

Lizze gave me permission to post this here.  She recently went to her eye doctor and they discovered she has Macular holes, not just one, but several. Her current eye doctor said they were nothing to worry about however, research says otherwise.  I wanted to share this with all of my readers as well.  As it turns out, this is almost always a big deal.  Please keep her in your thoughts and prayers as she is very concerned and rightfully so. My Macular Holes by Lizze Gorski of mylifebeyondlabels.com            I have an eye doctor here in town. I've never mentioned my eye doctor here on MLBL before so I won't now. Although excluding my PCP, Dr. Norch, and her staff I'm slowly starting to distrust nearly every doctor and specialist…

4 Comments

My advice to parents new to #autism

I wanted to take a few minutes and say something to all the parents that are new to the #autism journey.  I'm not an expert by any stretch of the word, however, I have accumulated a great deal of experience over the past decade.  One of the first things I can tell you is not to listen to everyone who tells you what to do.  I know that ironic, considering I offering advice but let me explain.  Autism is profoundly different for every person that's diagnosed.  This means that no two people with autism are exactly the same.  I find that all too often, people forget this truly important autism fact. They will try to tell you what to do because it worked for them.  Maybe it will also work…

2 Comments

#Autism and @MineCraft: A match made in heaven

Elliott and I have been playing MineCraft on Android for awhile now.  However, he just discovered that it's on the xbox 360 as well. I used the very last of my Microsoft points to grab it off of xbox live. Elliott is thrilled. MineCraft is a great game that anyone can play.  It encourages use of his imagination and fosters creativity.  He essentially get a blank pallet and can create anything his amazing mind can think up. I would recommend this game to anyone with a child. More importantly, I would recommend MineCraft to anyone with an autistic child that likes games and enjoys creating things.

5 Comments

Change of plans…..again

There is likely to be a change of plans today, as far as, Gavin's concerned.  Instead of leaving today,  he's going to leave tomorrow.  Elliott and Emmett haven't been able to spend time with Lizze's parents because of this whole thing.  We thought it would be nice for them to spend some time and then the night with her parents before Gavin's goes back.  They will go over today and when she brings them home on Sunday,  she will basically just swap out Gavin for the other two. Of course, this all depends on the weather,  which at the moment isn't looking to good. Look,  Gavin needs to be out of the house but at the same time, the boys need to remain connected to their grandparents.  This is just…

0 Comments