Ehlers Danlos Archives - Page 58 of 101

We had some incredibly violent outbursts

We had some very violent outbursts last night and yesterday. Gavin was making some mistakes and not coping with them well at all. The two main ones were at dinner time and revolved around issues with his food. The first one was in regards to his Ramon Noodles. He made Ramon for dinner, used cold water and realized that when he went to eat it, it was cold. Our water cooler had been out of water over the weekend and when it's empty, we shut it off. We forgot to turn it back on yesterday when we refilled the water jugs and as a result, the water wasn't heating or cooling. He didn't notice that the water coming out was cold, which is weird cause it's pretty obvious due to…

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March 19, 2019

Gavin / My thoughts

Gavin had a HORRIBLE night

This will be quick because we've not had a good evening. Gavin has been freaking out all night. He self-injured and hit the wall, quite hard actually. I'm exhausted but I wanted to let you guys know what's going on with his meds. It's been decided that Gavin will stop Clozapine. We're doing this over the next 3 weeks and while we are concerned about what this potentially means, it's clear that it's in his best interest. I'll talk more about the issues we had tonight, later today. For right now, my head is pounding and I'm so fucking stressed out I can't take it. I need to go to bed and try to sleep this off. Stay tuned.

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March 18, 2019

My thoughts

I’m taking back control over my life this week

I'm not looking forward to this week. We have a huge decision to make in regards to Gavin's medication and I have oral surgery scheduled for this Friday. I feel absolutely zero excitement for either of these things and frankly, I'm very much on edge. Doing right by Gavin is a very difficult task because it's rarely black and white. In most cases, it's complex, convoluted, confusing and utterly grey. There's no clear cut right or wrong answer and we often find ourselves having to pick between several terrible options. As far as my oral surgery goes, I'm pretty freaked out. I was traumatized during emergency oral surgery as a small child and so there's a whole lot of baggage here. I'm having my 3 wisdom teeth removed and the…

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March 18, 2019

Clozapine / Gavin / My thoughts

A very difficult but necessary decision

Lizze and I have come to a very difficult but necessary decision over the weekend. In the morning, Gavin sees his psychiatrist. When we see him, Lizze and I are going to discuss pulling Gavin off of Clozapine. Why in the world would we want to take our Autistic and Schizophrenic 19 year old son off of the only antipsychotic that has ever worked? That's a great question. Put simply, Lizze and I are very concerned about Gavin's ever increasing level of confusion, especially in the first 5 or 6 hours following his morning dose. He's been on Clozapine for a very long time but in recent years, we've had to decrease his dose because his body wasn't handling it as well as it once had. We've run into things…

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March 18, 2019

My thoughts

It’s been a long weekend

We had a really long day yesterday but it was a pretty good one. I took the boys walking in the morning and everyone had a great time. We saw the lonely duck and for the second time, it flew from across the park, landed a few feet from us and walked right up to Emmett. This duck seems to have a thing for Emmett because the last time I had Emmett walking with me, it made a beeline from across the other side of the park, crossing the creek, hopping out and waddling right up to Emmett. It's a pretty unique experience and one that Emmett's getting a big kick out of. After the park, we made it home in time to get cleaned up, pick up Lizze and…

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March 17, 2019

My thoughts / Podcast

Supporting #Autistic Artists with Harish Bikmal

I'm really excited about this weeks episode of The Autism Dad Podcast. I interview Harish Bikmal (an Autism Dad) about his Social Benefit Enterprise called Zenaviv and how they are helping Autistic artists. This is some very cool stuff and I really wanted to bring this to my audience as a whole because so many of you could potentially benefit from this. In a nutshell, Zenaviv embraces and promotes artists with Autism or other special needs. They bring their amazing talents to the public and help the artist earn a living. Each artist retains at least 66% of each sale and retains all rights to their work, as well as the original art itself. Lizze and I were sent some samples of what these amazingly talented artists are producing and…

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March 15, 2019

ADHD / Akron Children's Hospital / Emmett John / Pediatrics / Today's Victory

Today’s Victory: The Good, The Concerning and The Cause for Celebration

Yesterday after picking the kids up from school, I dropped Elliott off at home before taking Emmett to an ADHD med-check. When a child is on ADHD medication, there are frequent medication checks for a couple of reasons. First and foremost, it's about making sure the medication is still the correct medication for the child in question, the dose is still correct, the child is benefiting from the medication and updating the doctor of any changes in the child's life that should be noted. Secondly, med-checks occur because ADHD medications are usually highly controlled substances and you can't get refills without an appointment. That's just the way it is and while it can be a pain in the ass at times, it's the right approach. We're very careful with medications…

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March 14, 2019

Autism Parenting Insight / Emmett John / My thoughts

Emmett set the bar for bravery incredibly high today

It's been a really long day but it's also been a pretty good one as well. Emmett's dentist appointment went well and he kicked ass. They fixed his tooth and he didn't even need numbed up. I think it took a total of 5 minutes. He was nervous but very brave and I couldn't be prouder. ☺ This means that the bar is set pretty high in the bravery department and it's gonna be tough for me to live up to that next week when I have my wisdom teeth removed. I'm absolutely terrified of having this done but I need to set an example and preferably, a positive one. ☺ I also was able to spend some one on one time with Emmett today. I took him to lunch…

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March 12, 2019