Read more about the article The struggles we face while raising a profoundly cognitively impaired adult son
Akron Children's Hospital / Autism Parenting Struggles / Gastroenterology / Gavin / My thoughts

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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November 16, 2018
Read more about the article I try so hard not to get angry but his behaviors can make that more difficult
Autism Parenting Confessions / Autism Parenting Struggles / Gavin / My thoughts

I try so hard not to get angry but his behaviors can make that more difficult

I'm not having the best day. My anxiety is through the roof and I'm internally freaking out. I don't really have a specific reason why but it's making me more easily frustrated and/or overwhelmed. Unfortunately, that weakness is making some things harder for me to cope with right now, especially in regards to Gavin's behaviors. He's asking the same question, over and over. This is just one example of this. Since I told him on Friday that his infusion meds were on backorder, he keeps asking me where they are. Every time I tell him that they are on backorder, he's says oh, okay. Ten minutes later, he's asks me the same question again. It's insanely frustrating but I honestly don't think he remember ever asking the question before. I…

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November 5, 2018
Read more about the article Yay for #meltdowns
Autism Parenting Struggles / Meltdowns / My thoughts

Yay for #meltdowns

I'm just not a fan of today. The weather is terrible and the kids are struggling but goddamnit if we didn't go trick or treating in the pouring rain. We debated and not going was the end of the world for some. They missed out last year because they were sick so we didn't want to miss out again this year if it was possible to go. Lizze is sick again and so I ended up taking the boys to my parents house on my own. That's usually where we go. Our neighborhood isn't safe and so we go somewhere that is. It poured the entire time and everyone got soaked but everyone also had a good time. The kids are miserable now that it's over and the excitement has…

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October 28, 2018
Read more about the article Gavin’s behavioral problems will ultimately be the end of us getting a night off
Autism Parenting Struggles / Elliott / Emmett John / Gavin / My thoughts

Gavin’s behavioral problems will ultimately be the end of us getting a night off

Lizze and I are knee deep in the first break we've had in about a month. Gavin and the boys are at their grandparents for the night. What typically happens is that these types of visits are are broken up. The boys (Elliott and Emmett) will go and Gavin stays home. Gavin will go by himself the next time, while the boys stay home. The reason for that is because of problems that tend to arise as a result of Gavin and the boys not getting along. I've talked about this before. Gavin will try to parent the boys and/dictate what they do while they're visiting. The boys don't like it and it just creates problems. Frankly, we see this at home all the time and it's definitely not a…

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October 27, 2018
Read more about the article I was completely overwhelmed tonight and didn’t handle it well
Autism Parenting Struggles / My thoughts

I was completely overwhelmed tonight and didn’t handle it well

Good days and bad days are relative, especially when you're an Autism parent. A good day might be only having to live through a few meltdowns and a bad day might be absolutely catastrophic. There are of course, plenty of days that fall somewhere in-between. Today for me was mixed bag. Lizze was down for most of the day, which sucks for a million reasons, not the least of which is the fact that she's truly miserable. Sometimes the struggle is physical and sometimes it's emotional in nature. Other times it's a combination of both. Today was a combination of both and life just wasn't fair to her. Anyway, after school today, I picked the boys up and took them to my parents house to carve pumpkins. It's become a…

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October 26, 2018
Read more about the article They don’t understand how he’s the oldest and yet acts like he isn’t
Autism Parenting Struggles / My thoughts

They don’t understand how he’s the oldest and yet acts like he isn’t

The boys and I had a movie night after therapy and a quick trip to the park. We decided on The Incredibles II because we loved the movie in the theater and frankly, it's the only thing everyone could agree on. It was even better the second time around but this time, the boys were getting frustrated because Gavin kept talking during the movie. It's not that he was just talking, he was talking smack to the bad guys in the movie. It was kinda weird. He doesn't mean to be annoying or frustrating but he can definitely be both sometimes. Trying to get the boys to understand what's going on with Gavin has proven difficult. They understand the basic concept that Gavin has many challenges but they don't get…

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October 24, 2018
Read more about the article I’m so tired
Autism Parenting Struggles / My thoughts

I’m so tired

The boys and I went to therapy tonight. Lizze was not feeling well and has been sleeping. I brought Dr. Pattie up to speed on the boys and we spent some time helping them work through some of the issues they we're having while we were there. It's absolutely exhausting because I'm trying to manage everything and it never stops or even slows down. Lizze struggling with her health and that puts a disproportionate amount of responsibility on my shoulders, which is okay but it takes its toll. I don't mean to sound like I'm complaining, even though I'm sure it sounds otherwise. The reality is that things are pretty rough. I'm trying to work, help everyone with everything they need, manage the house and the rest of our life.…

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October 23, 2018