The heartbreaking reality of how trauma has seriously impacted one of my kids with #Autism

I've been meaning to write this but the idea of doing so has been too overwhelming. There are a number of reasons for that but the main one is that I'm struggling with my own depression at this point and many things have me overwhelmed. I'm going to try and keep this super quick so I can actually finish it. Elliott finally got into psychiatry at Akron Children's Hospital this past week. We'd been waiting for a very long time for an opening because child psychiatrists are nearly impossible to find in our area, especially good ones. We ended up meeting with a nurse practitioner. Turns out we already knew him because he used to work with Dr. Reynolds, Gavin's longtime psychiatrist. That was very comforting, although we'd never spoken…

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Dear God, I’m not sure how much more I can take right now

It's been a rough week and yesterday, we lost our 3rd pet to cancer in less than a year. The kids are devastated and everyone's a mess. We did manage to get the boys to school but not without a great deal of effort, which pretty much drained us of anything even resembling energy before the day even began. With that in mind, you can probably understand why we're so stressed out about Gavin's appointment today. Gavin has a solid mass on his right forearm and it's concerning enough that his doctor sent him for an ultrasound, which is being done in about an hour. We scheduled this about a week or so ago and it's been a long wait. The mass in his forearm isn't a lymph node and…

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Thoughts and prayers would be greatly appreciated today

Today is going to be a very big day for us as we're finally getting Elliott into the psychiatrist at Akron Children's Hospital. You may recall that the appointment was the first week of November but they moved it up due to a cancelation and Elliott's need. I haven't talked about Elliott's struggles too much because I'm trying to navigate invisible boundaries. The truth is, Elliott's miserable. As time goes on, it's getting worse instead of better. Elliott is struggling with depression and quite possibly bipolar disorder as well. We're going to get a better idea of what's going on and figure out how we can best go about finding him relief. We have some last minute paper work we need to collect from the school before going. We will…

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Here’s what we learned about the mass in Gavin’s forearm and what we’re doing next

Gavin did pretty good at his appointment today. The nurse came in and did the whole vitals thing. She gathered information and while she was doing so, we noticed a previously unnoticed, second mass. The new one in on Gavin's neck and he was not happy. This is when Gavin began to get agitated and upset. He started to have a meltdown but we were able to get things under control within a few minutes. The doctor examined the mass on Gavin's right forearm. She looked at it for quite sometime. It's one of those things where she can't say there's nothing to worry about and likewise, can't say this is serious and needs to addressed right away. She doesn't know what to think of it. We are also aware…

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As a general rule, I don’t apologize for any of my kids with #Autism but this is one exception

I mentioned in a previous post that something happened yesterday while at Gavin's hematology appointment. Akron Children's Hospital was great, they always are. You have to understand something before we go any further. This appointment took place where Gavin used to receive his IVIG infusions. We're very familiar with this place after years of visits. Gavin is a sweet kids and doesn't have a mean bone in his body. He would never intentionally try to hurt someone or say something that caused someone pain. Unfortunately, along with missing mean bones, he's also missing a filter. It's not uncommon for kids on the Autism spectrum to lack a verbal filter. They basically say it how it is, and are unburdened by things like inhibition. Typically, kids with Autism don't lie. They…

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I’m confused but ultimately relieved after our visit to @AkronChildrens Hospital today

Let me start out by saying that this was a very good appointment and I expect nothing less from Akron Children's Hospital. They've never let us down. ☺ It's not too often that we go to an appointment for Gavin and walk out with what amounts to good news. Today was very clearly the exception to that rule. I'll bottom line it for you and then talk about something that happened while we were there. We met the doctor and he was very soft spoken. He took a lore than reasonable amount of time, answering my questions. He looked over Gavin's labs and said that truthfully, his numbers look pretty good, even when we had thought they were pretty bad. That caught me off guard at first because we've believed…

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We’re back in #Hematology at @AkronChildrens Hospital

I'm in a really bad mood but that doesn't matter because I have things that must get done. The most important of those things today involves Gavin getting to Hematology at Akron Children's Hospital. I've been talking about this recently because we are finally getting in to see the hematologist in regards to Gavin's unknown blood disorder. Nothing has really gone as planned thus far but we swung by to pick up copies of Gavin's labs so we can take them with us to show the doctor. I ended up taking Lizze home before heading out because she wasn't feeling well. I can totally handle this and I need her to get some rest and feel better. I always say we have to adapt and that's the truth. It's not…

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We have a very, very important appointment with hematology at @AkronChildrens Hospital today

We have a huge doctor appointment today. Actually, Gavin has a huge doctor appointment today. The bottom line is that's it's a huge appointment. We are finally getting into hematology, after trying for what seems like forever but in reality, it was about a year or so. This is a big deal because it's really the first new specialist we've seen in a long time. Gavin for the last couple of years has been dealing with an unknown blood disorder that causes his Absolute Neutrophil count to drop to dangerous levels and his platelets get very low as well. We have no explanation for this aside from it's a side effect of the Clozapine. That's a possibility but we aren't convinced that's the case. It's also possible that it can…

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