The struggles we face while raising a profoundly cognitively impaired adult son

I spoke recently about some of the struggles we face while raising a profoundly cognitively impaired adult son. This morning presented me with yet another issue that was directly related to how Gavin handles things. When we were at his gastro earlier this week, there were a few issues that came up as a result of Gavin's limited capacity and poor memory. None of these things are his fault and while they would still be frustrating at times, it's his reaction to being questioned that is really frustrating. You can read the recent post about this appointment and the initial frustrations by clicking here. It wasn't until this morning that the other complications presented themselves. Gavin's doctor had asked about how he was doing with his Ensures. Gavin drinks one…

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It looks like it will be a very long night

Just a quick update. I mentioned in the last post that Emmett woke up and wasn't able to go back to sleep because of his sore throat. It turns out that Emmett is still unable to go back to sleep and I'm now sitting in a chair, while he's trying to fall asleep on the couch. If he falls asleep, I will hopefully be able to eventually move him to his bed. I'm so fricking tired and I need sleep.

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Both kids are getting sick but Elliott is getting worse

Both boys are going to be home again today. They are both sick and Elliott is becoming concerning because of his fever, congestion and cough. He's probably just dealing with a cold but he and Emmett both will be seen by their pediatrician today. Emmett was directly exposed to Whooping Cough but went on antibiotics last weekend. I suspect Elliott will be put on antibiotics as a precaution as well. Anyway, it's better to be safe than sorry and we'll let his doctor decide what she thinks is best. Aside from that, there's not really a great deal going on today. I'd very much like to see everyone sleep in because I could really use the extra sleep. As I'm writing this, Emmett is awake and unable to go back…

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I’m trying so hard not to be swallowed up by the negative

Our week continues to unravel and all I can say is thank God it's almost Friday. It was a rough night, filled with restless sleep. I'm not sure what was going on. Actually, that's not true. I do know what's going on and it has to do with the stuff I talked about eariler this week. I'm going through a difficult time right now and it's keeping me up at night. Anyway, both boys are home from school sick today. They have appointments with their pediatrician tomorrow. They are both dealing with what seems like a cold. It's a runny nose, sore throat, fever, mild cough and congestion kinda thing. I'm not too worried about this because we'll see the doctor tomorrow and if she's concerned, we can deal with…

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Sometimes #Autism can be incredibly frustrating

It's been a very frustrating day. We had to totally adjust our plans because Elliott was home sick but we try very hard to roll with the punches. Autism and/or Special Needs parents have to be able to adapt because they living in a ery fluid environment. I was able to get Gavin to his appointment at Akron Children's Hospital but that ended up being frustrating as well. His gasteo is really nice and she's incredibly patient. ☺ I've spoken about this many times over the years but it bears repeating once again. Gavin is not a reliable source of information about anything, especially when it comes to his health. He struggles with memory issues and even basic comprehension. None of this is his fault but he very much muddies…

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This morning is a perfect example of why #Autism and #SpecialNeeds parents need to be flexible

Today's already not going as planned. I was supposed to get the boys to school, go walking and then take Gavin to Akron Children's Hospital. Unfortunately, things fell apart rather quickly this morning. Elliott woke up not feeling well. He's got a runny nose, sore throat and now a fever. It appears as though he's spiking a fever because he went from 99°F to almost 101°F in a span of a few maybe 15 minutes. This is most likely nothing but because of the Whooping Cough thing at school, they're tracking the kids with fevers I guess. That makes sense actually. Emmett was the one directly exposed and treated with antibiotics. He remains a-symptomatic and so does everyone else in the class, from what I understand. Anyway, as I said,…

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He can go from zero to rage in no time flat

Elliott's appointment went pretty well. It was with the Behavioral Health Center at Akron Children's Hospital and it was also the first time we had really been to the new building. It's pretty amazing.. ☺ This trip was basically a followup and med check. Nothing new really happened and nothing has changed as far as medication is concerned. Elliott had a few tense moments because he became very frustrated. That's sorta what Elliott does. He goes from zero to rage in not time flat and his frustration threshold is very low. It was good that it happened because they were a there to witness some of the challenges he's dealing with first hand. Anyway, I took Elliott to get lunch and was kinda excited about that because he and I…

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