childhood disintegrative disorder Archives - Page 167 of 276

2 main reasons why @Philips hue bulbs and motion sensors have saved my sanity (@tweethue)

I've not written about this before but one of the things that drives me crazy, is the kids leaving lights on when they leave the room. More than that, it drives me crazy that they keep their lights on during the day in the first place. This has been an ongoing problem because the boys don't feel comfortable in a room without the lights on. They leave said lights on when they leave because that way the lights are on when they return. This is an Autism related thing for them. More specifically, it's probably mostly sensory in nature but I have heard of many other parents struggling with the same thing. As the person struggling to pay the electric bill, this drives me crazy because it's a waste of…

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July 5, 2018

General Update / My thoughts

3 interesting updates

This is just a quick, general update because I'm stretched kinda thin at the moment. We'll begin with the the forth of July. Rarely does a year go by where we aren't having to call the police because some idiot is lighting off illegal fireworks next to our house. This year was no exception. Although, we didn't have need to call the police until almost midnight this time. Look, we celebrate the forth of July and I love our country too. What I cannot accept is when people don't care how their actions impact their neighbors. Random people were setting off fireworks on our street throughout the day. As long as what they are doing doesn't hit our house, we usually don't care. The boys struggle with the noise but…

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July 5, 2018

Gavin / My thoughts / Schizophrenia / YouTube Video

Talking with a #Schizophrenic Part 1

In this video, I listen to my son with both Autism and Schizophrenia, tell me about a mission he must go on to save the universe. This is typically the nature of his Schizophrenic hallucinations. This is NOT his imagination. This is how Schizophrenia impacts his life. The purpose of this video is to educate, provide insight and destigmatize mental illness. It's important that I be supportive without playing into his hallucinations. It's a very fine balance. We never challenge his hallucinations because that could prove to be potentially dangerous to us and harmful to him. When you're done, Part 2 can be found here. Be sure to SUBSCRIBE for the latest updates and educational videos release on my YouTube Channel. https://youtu.be/OV6k-s0I71Y

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July 5, 2018

My thoughts

It’s been a pretty good day

We've had a pretty good day thus far. Lizze and the E's did great in their two mile race this morning. They walked with my Mom and sister in law. They were actually among the first walkers to finish, with a time of roughly 45 minutes. The only issue we ran into was the extreme heat. By 9 AM the heat index was already in the mid 90's and I think it took a great deal out of Emmett because had a series of smaller meltdowns in the hour that followed. We had a nice brunch afterwards and celebrated Emmett's birthday with my family. I'm in a good mood but I don't feel very well. Hopefully, I can snap out of it after a pop an Advil. As for the…

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July 4, 2018

Family Fun / My thoughts

It’s going to be a great day

We're up and at it early today because Lizze, Elliott and Emmett are taking part in the annual July 4th race. They are walking with my Mom, sister and sister-in-law on the two mile course. Everyone's really excited and it should be lots of fun. Gavin and I will be waiting at the finish line with my Dad and grandpa. I'm a bit uncomfortable taking Gavin into a crowd of people, considering his current situation but it is what it is and I'm probably overreacting. Afterwards, we're going to my parents house for a light brunch and to celebrate Emmett's birthday with the family. It should be a good day but it's alps going to be a hot one. A heat warning begins at 9 AM and carries through the…

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July 4, 2018

Family Pets / Ferrets / My thoughts / YouTube Video

4 Ferrets and 50 Feet of Corrugated Pipe

I've been getting a ton of requests for more videos of our ferrets. The boys and I spent some time setting up a new playground for our furry friends. We picked up fifty feet of corrugated pipe from Home Depot and sorta turned it into a huge maze of tunnels for the ferrets to play in. They love running through tunnels and have been having a blast with their new playground. Anyway, here's the video I just put up on my channel, explaining what we did and sharing some information about the ferrets themselves. https://youtu.be/V-kVh_wS_wA

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July 4, 2018

Common Variable Immunodeficiency / GAMMAGARD / Gavin / Immunology / My thoughts

There are 14 reasons why I can’t stop worrying right now

I've spent the morning on the phone, trying to get ahold of the pharmacy responsible for delivering Gavin's IVIG infusion supplies. I'm not content waiting to find out when his medication will arrive. This is too important to let happen on its own time frame. After a few attempts, I finally got to speak with a person at the pharmacy a little bit ago. As usual, they were very nice and seemed to be equally frustrated that we don't have Gavin's medications yet. This person went over what was going on and it's safe to say that anything that could possibly go wrong, has and continues to go wrong. Let's just review what's happened so far. There is what appears to be a manufactured (purposeful} nationwide shortage of GAMMAGARD. Immunology…

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July 3, 2018

Common Variable Immunodeficiency / GAMMAGARD / Gavin / Immunology / My thoughts

This is life threatening and he needs his treatment

It's now Tuesday, July 3rd and it's been three weeks since we first learned about the nationwide shortage of GAMMAGARD. Gavin recieves at home IVIG every Monday and Friday for treatment of Common Variable Immunodeficiency (CVID). His immune system is severely compromised and this medicine gives him a temporary immune system. It's not permanent and it burns off rather quickly. These infusions are done twice a week in order to keep his levels up and his body fighting off illness or disease. Gavin has now missed four infusions in a row and while we're told not to panic, I can't help but feel this overwhelming sense of urgency to get this resolved. We're currently waiting on his new medication to be dispensed. Everything has been approved and the medical supply…

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July 3, 2018