Dear #Autism Parents, I know how it feels

The stress level in the house is pretty high today. I'm not sure exactly what this high level of stress stems from because it's probably not one single thing. We're worried about Gavin's immunological issues, countless growup issues that we shield the kids from, and all the other things that go along with being a special needs family. While we're getting out of the house on day trips, Lizze and I haven't had a night to ourselves in a long time. Any parent can go crazy without time to themselves. As special needs parents, we almost never get time to ourselves and the extreme toll it takes on our physical/emotional well being is very real. Lizze and I are burning out. In our lives, there is simply too much to…

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2 very important, but slightly delayed updates

I meant to share this eariler but frankly, it still isn't finalized and nothing has actually changed yet. That said, I finally heard back from Gavin's immunologist about the issues with his GAMMAGARD. They hadn't reached out because they were still trying to get everything approved. The got everything approved but insurance screwed up and approved the wrong pharmacy. You can't get these things at just any pharmacy. The pharmacy has to agree to certain terms and there's a lot of red tape. Approving the wrong pharmacy doesn't do us any good because everything is at our pharmacy. I don't know if that makes sense. Basically, insurance made a mistake and the doctor has not be able to reach them to get it fixed. Calls aren't being returned, at least…

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My youngest just hit double digits

Our day was fairly nonstop and I didn't get a chance to post this eariler. Better late than never. Emmett turned 10 years old today and he had a great birthday. We try to plan far enough in advance that we can pull things off. Anyway, Emmett is obsessed with Nerf Guns and he got what he calls the ultimate Nerf Gun today. Apparently, we did good. We had a busy but mostly low key day. We decided to celebrate his birthday in the early afternoon. It was pretty simple but it made him happy and that always feels good. We had ice cream cake before he opened his birthday presents. There were a few appointments this afternoon but we were done about dinner time. I cooked a couple pizzas…

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The countless reasons why my life as an #Autism Dad is so hard

As Autism parents, we all live in different worlds because Autism impacts our lives in very different ways. Some people have it pretty good and life is manageable, while others literally struggle to make it through each day. Many others fall somewhere in the middle. I fall into the category of struggling to make it through each day. I can't remember a day where I would sit back and say to myself, it was a really easy day today. In my life, easy days don't exist. I have an eighteen-year-old with the capacity of a five or six year old and that's anything but easy. Life isn't meant to be easy for anyone. If things are too easy, we can become complacent, and perhaps take things for granted. When things…

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We keep trying and that has to count for something, right?

So far, this is summer break has been pretty decent. We've been trying to spend as much time outside of the house as possible and because we can't spend that time in our yard, we have to find places to go. Money's tight but we're finding things to do that are either super cheap or even free. Last Friday, we took the kids to see Jurassic World: Fallen Kingdom as a surprise for Emmett's birthday, which is actually tomorrow (6/26/2008). It was a really awesome time and everyone had fun, especially Emmett. Lizze and I were so happy to be able to do this for both him and his brothers. ☺ We've spent a lot of time out at our local parks and we're trying to go walking every evening.…

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The worst thing that 1 #Autism parent can do to another

I've been a voice in the Autism community for almost a decade. People have gravitated to me because I say what they're thinking without them having to say it. I don't judge those with differing opinions and I never force my views on anyone else. I love taking the pulse of the community by publishing polls designed to help people get a better understanding of what others in the community are experiencing. Someone had responded to one of my many polls by telling me that it was an awful question for me to ask. That awful question that was asked was Do you ever miss your life before Autism? Why shame me for asking it or others for answering it? Feel free to answer the poll below. [totalpoll id="46574"] The…

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I haven’t written cause I’m not doing so well

It's been a couple days since I've published anything about anything. There are a few reasons for that. The main reason however, is that I'm not doing so well right now. I'm not sleeping and I'm not coping well with anything. I'm overwhelmed by all I have to figure out and there's very little I can do about it. There are bills and major medical worries crushing me. Gavin's still missing medication to replace the GAMMAGARD. They still haven't figured everything out and Monday will mark his second IVIG infusion in a row that he's missed. It's terrifying. The change to his Clozapine hasn't really helped with him sleeping too much during the day. We don't know what to do with that. I'm fighting back but I feel absolutely powerless.…

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I’m super excited about this

It's not too often that I can pull off an actual surprise. Between the financial hardship and my inability to keep a secret from my family, it's not easy. I've managed to somehow keep a secret from the boys and aside from Lizze, they don't know a thing. In the morning, we're taking the kids to see the new Jurassic World movie as an early surprise for Emmett's birthday on Tuesday. He's been wanting to see this since it was announced.. I'm super excited to surprise him and his brothers in the morning.

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