childhood disintegrative disorder Archives - Page 214 of 276

Why the NeuroPsych testing is so important

I know is there isn't anything that I can do but I'm really upset that Gavin's testing was canceled. The last time he had NeuroPsych testing was on 7/01/2014. I know that because I pulled his report. I thought it was longer than that but I guess not. There are a few reasons that this test is so important. The first is that it gives us a complete picture of where he is, how he thinks, what his capabilities are, where his weaknesses are and what we can do to help. One of the big take aways from last time was learning how Gavin's memory worked. He struggles with memory big time but at the time of his precious testing, they discovered that his brain is retaining the information but…

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November 3, 2017

My thoughts

We had a big surprise tonight

It's a school night and we are down two kids. Even though Gavin's appointment was canceled, my parents took the two boys overnight and will them to school anyways. This was really amazing because we haven't had a break from the boys in a long time. Gavin stayed with us and we decided to take advantage of this. We took Gavin to dinner and then to see the new Thor movie. He was funny because the movie didn't start until 8:30 PM and he was so worried about missing his bedtime. lol The movie was amazing and Gavin was so tired after. Gavin is very focused on his schedule and routine, disrupt it at your own peril. It's good to sometimes disrupt his schedule or routine every once in awhile…

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November 3, 2017

Autism Parenting Insight / Cleveland Clinic / Gavin / Insurance Related Troubles / My thoughts / Pediatric Neurology

Bad news

I've been continuing to follow up in regards to Gavin's NeuroPsych testing scheduled for tomorrow. After a few attempts to connect with our case manager, I haven't heard anything back. As a result, I called the Cleveland Clinic directly, checked on the status and I'm glad I did. Insurance has denied Gavin's claim three times this week already, the last being yesterday. Unbeknownst to me, the appointment had been canceled. I'm glad I did my due diligence because otherwise I would have hauled Lizze and Gavin to the Cleveland Clinic at a Godawful hour, only to find that we no longer had an appointment. The only reason I would have assumed anything in the morning is because I was told by the Cleveland Clinic eariler in the week that the…

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November 2, 2017

Autism Parenting Advice / My thoughts

Never take this shit for granted

We've made tentative plans to have the boys spend the night with my parents because we may have to leave for the Cleveland Clinic around 6 AM. I've reached out to our case manager for an update and I'm waiting to hear back. Something that's really important to me is that we always stay on the same page as our parents, when it comes to watching the kids. When they are kind enough to watch the kids for us, we make it a priority to keep them up to speed on any changes to our plans, even if they're only potential. I think it's just a courtesy that they deserve because they are helping us out in a big way and I don't like springing any changes on them if…

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November 2, 2017

Autism Parenting Advice / Gavin / My thoughts

Taking on insurance and fighting for my son

We're still waiting to hear about Gavin's testing for tomorrow. We're stuck in insurance limbo. As soon as I found out there was a problem, I knew there was only a few things I could do. The first thing was contact Gavin's insurance case manager. If your child doesn't have a case manager, ask for one. The case manager is a single point of contact for everything related to insurance. Rather than call and talk to a random, script ready customer service rep, you have a direct line to someone who's sole purpose is to help insure your child gets what they need. I spoke with Gavin's manager in the middle of the week and explained what was going on. She immediately got involved and took over the battle. She's…

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November 2, 2017

Feeling Blessed / My thoughts

Can you even ask for a better start to the day? I think not.

We had a pretty decent morning. The kids were in good moods and we even got out the door before 8 AM. That's a good thing.. ☺ I thought we would further the awesomeness of the morning and swing through Dunkin Donuts. The drive thru was packed but the store was empty, so we went inside. Emmett was amazed by all the donut they had and didn't hide said amazement very well. lol Elliott looks sad in the picture but he wasn't. I think I just took the picture at an odd moment. He was super happy to get donuts and so was I. As simple as that is, being able to do things like this on occasion, feels really good. We've come a long way and while we're not…

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November 1, 2017

Inspirational Posts / My thoughts

Sending my thoughts and prayers

I wanted to take a few minutes and to say a few things about the terrorist attack that our fellow countrymen in New York endured yesterday. Our thoughts and prayers go out to all those impacted by this act of cowardice, especially those who lost their lives and their families. What happened was an example of how cruel and evil human beings can be to one another. At the same time, it's an amazing testament to how brave and strong the people of New York are. The first responders did an amazing job of neutralizing the threat and securing the area to ensure everyone's safety, with no thought of their own. We all owe them a debt of gratitude, so thank you from the bottom of my heart. To all…

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November 1, 2017

Cleveland Clinic / Gavin / My thoughts / Pediatric Neurology

Insurance won’t pay for Gavin’s testing

We have another issue that I haven't spoke about yet but as the day is drawing closer, I should bring you up to speed. When Gavin saw his pediatric neurologist st the Cleveland Clinic last month, it was decided that he needed three additional appointments. The first appointment was with the Cole Eye Institute because the doctor suspects that the lens in each eye has become detached. It apparently requires a special exam and wouldn't otherwise be detected. This would explain the visual problems he's been experiencing. The second appointment was an EEG. Gavin hasn't had a witnessed seizure in a long time but he is epileptic. The doctor wants to make sure everything is okay. The third and arguably most important appointment is supposed to take place in two…

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November 1, 2017