Read more about the article Gavin was absolutely miserable tonight
Autonomic Disorder / Gavin / My thoughts

Gavin was absolutely miserable tonight

Tonight was not good to Gavin. Poor Gavin got sick after dinner and was absolutely miserable until he finally fell asleep. Shortly after eating dinner, he got what he describes as a really bad stomachache. Tums seem to have helped with that rather quickly but it was the headache that kept him up last night. I'm beginning to suspect that when he has these episodes, they are mini autonomic crises. The reason I say that is because they always happen after eating, when his blood rushes to his stomach. That can and does cause his blood pressure to destabilize, leading to a headache. That's actually how we first discovered there was a problem in the first place. When he lays down, he often feels better. This happens a few times…

0 Comments
December 26, 2017
Read more about the article His IVIG infusion had him in tears tonight
Gavin / IVIG Infusion / My thoughts

His IVIG infusion had him in tears tonight

We officially put Christmas behind us this evening and began the sorted journey of getting back to our normal routines. In Gavin's case, that meant he had to do his IVIG infusion, which he does every Monday and Friday. Unfortunately for Gavin, his IVIG infusion didn't go so well. He started the process about 6 PM and immediately hit a few bumps in the road. The first infusion site needed to be replaced because it wasn't working and the second infusion site was leaking. Both of these scenarios are nightmare scenarios for Gavin because it involves more needles and more pain. To make things even worse for him, the procedure ended up taking almost 6 hours. This put Gavin several hours passed his self proclaimed bedtime and that had him…

0 Comments
December 26, 2017
Read more about the article Is this a new hallucination or just a dream?
Gavin / My thoughts / Schizophrenia

Is this a new hallucination or just a dream?

Gavin's been doing okay as far as his Schizophrenia is concerned. We see the obvious symptoms every single day because they've never been completely controlled. Thankfully, Gavin's hallucinations are not as dark as they used to be and they used to be really dark. I never know what to think when he tells me about a dream because it could very easily be a hallucination and he simply wouldn't know the difference. Today he informed me that he'd just saved Christmas from the clutches of evil. He didn't go into any further details, so I'm not sure if it was a dream or a mission. Color me intrigued because it's different than I normally hear from him and I'd actually be interested in hearing the rest.

0 Comments
December 24, 2017
Read more about the article How often does your kid with #Autism get hurt?
Autism Parenting Struggles / Gavin / My thoughts

How often does your kid with #Autism get hurt?

One of the big challenges we face with Gavin is his complete, total lack of self awareness. He's also oblivious to his surroundings as well. Both of these challenges are very difficult to work with and often lead to problems like what we had this afternoon. Gavin never seems to want to sit on the couch in our living room. He always sits on a folding chair, to the side of the couch and close to the fireplace. He's a creature of habit and rarely deviates from this. Unfortunately, there are times when Gavin is moving too quickly and not really thinking. When he goes to sit down, he sorta flings his head back and cracks it on the corner of the stone mantel. I don't know how many times…

0 Comments
December 21, 2017
Read more about the article It’s not easy raising a #Schizophrenic teenager with #Autism
Autism Parenting Struggles / Gavin / My thoughts / Schizophrenia

It’s not easy raising a #Schizophrenic teenager with #Autism

We had to temporarily restrict access to the kids Nerf guns as a result of them getting to carried away. They had been shooting each other in the face and that broke a major safety rule. Gavin just came downstairs and asked if he could have his Nerf gun back because he was being called in a mission to patrol Shuazoom. We gave it back to him because we didn't know what else to do. Gavin's Schizophrenic and honestly believes he's going on a real life mission. We didn't want to make anything worse for him by sending him into battle without his trusty weapon. Did we do the right thing? Who the hell knows. Schizophrenia is not easy to live with, whether you have it personally or you're caring…

0 Comments
December 21, 2017
Read more about the article Hasn’t he already been through enough?
Gavin / IVIG Infusion / My thoughts

Hasn’t he already been through enough?

For the third night in a row, Gavin has struggled to go to sleep because he isn't feeling well. Last night it was a stomachache and headache. Tonight is was a stomachache again. I think we need to get him into his gastro again and this time look at gastroparesis. Lizze has this, it's genetic and it's a large part of what makes her so miserable everyday. We do have a mark in the win column tonight. Gavin did his infusion on his own once again and did a great job. I don't think his condition at bedtime was related to his infusion, but who knows. There weren't any obvious side effects and he didn't have any complaints about how it went. We do however, need to order a new…

3 Comments
December 11, 2017
Read more about the article This doesn’t happen nearly as often as it used to
Gavin / My thoughts

This doesn’t happen nearly as often as it used to

Gavin's having a pretty good day so far. He seems to be functioning on all cylinders, at least for him. He woke up this morning, took his meds, cleaned his room, did the dishes and is just chilling out in his room now. He doesn't appear to be struggling as much as he was the other day. Dr. Pattie calls this the Swiss Cheese effect because sometimes, all the holes line up and Gavin shines through. Other times, the holes don't line up and we see him struggle more. Days like today are few and far between anymore. They don't come around nearly as often as they used to and so were extremely grateful when they do. ☺

0 Comments
December 10, 2017
Read more about the article It’s heartbreaking to see him like this
Autism Parenting Woes / Gavin / Heartbreak / My thoughts

It’s heartbreaking to see him like this

When you're a parent to a child with fragile physical health, a degenerative condition and severe mental health issues, it seems like there's no end to the heartache. Gavin is the child in our family who the above paragraph describes and it's true, there's no end to the heartache we feel as his parents. Helplessly watching him lose skills, abilities, memories and independence is a gut-wrenching experience I wouldn't wish on anyone. Poor Gavin is having such a hard time today. He's been walking into people and things all day long. He's stepping on things he shouldn't because he's not paying attention or isn't focusing on his surroundings. It's not his fault but he doesn't get that and frankly, it doesn't make it any less disruptive either. We're decorating the…

3 Comments
December 9, 2017