special needs Archives - Page 326 of 521

My wife and I have been going back and forth over this

I've been trying to figure out what to do in regards to Emmett's dentist appointment tomorrow. I remembered that we've had a similar situation in the past and the office said that as long as he's not sick, the fever is fine. The only difference between that and this is his mouthful of sores. Lizze and I have been going back and forth over this, but it's not an easy decision. He's already not going to school because he's running a fever still. If it were just the fever, we would probably move forward with the appointment. Unfortunately, he has a mouthful of sores and I'm pretty sure that's something they are going to notice. He already has another appointment in June. Elliott and Emmett both do actually. They bumped…

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May 4, 2017

Emmett John / My thoughts / PFAPA

Trying to find the light at the end of this tunnel

This fever flare has officially cost Emmett an entire week of school. Not only has it cost him the week of school but it continues to have a vice like grip on his body. He's not currently running a high grade fever, it's still a fever at around 101°F on average. We've taken to describing his tongue as a zombie tongue, because that what we image a zombie's tongue would look like. I'm not sure how to handle his dentist appointment tomorrow. He's not sick, but it looks like his tongue is falling apart. I need to call and try to explain what's going on and see what they think. The other thing is the fever. As soon as they touch him, they'll know he's running a fever. Frankly, Emmett's…

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May 4, 2017

Emmett John / My thoughts / PFAPA

I’m so overwhelmed I just want to cry

It's been another exhaustive day in the house of freakishly rare, and frustrating medical conditions. Emmett wasn't at school again because of a fever. He's now been out of school since last Thursday, and while this is outside of anyone's control, it makes me uncomfortable. The school is very understanding and we do t have any issues in that area, plus we do have a few notes from his doctor, but it doesn't cover everyday. Emmett did pretty well today. He wasn't as moody as he has been, but his fever is still present. It comes and goes throughout the day. We have to adhere to the twenty-four hours without a fever before returning to school rule. The problem is that while we may be confident this is a fever…

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May 4, 2017

My thoughts

Gavin seems to be losing this major skill and it’s heartbreaking

We have discovered Gavin is having some newer challenges recently that are really heartbreaking. Aside from all of Gavin adventures with his team of super best friends, one of the things that Gavin truly loves to do is play Minecraft on the PlayStation or Xbox. This is how he passes the time during his IVIG infusions. Unfortunately, he's begun struggling with this lately. He can still build some pretty amazing things, but he's forgetting what buttons do what. This means that building is becoming very frustrating for him because he's constantly pressing the wrong button and accidently destroying what he builds. This is a newer issue and I'm not entirely sure what to make of it. Using a controller seems like a muscle memory kinda thing and aside from reminding him…

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May 3, 2017

#Autism Discussions / My thoughts

How has #Autism impacted your life today

It's incredibly important we talk about how Autism can impact a family. This isn't about blaming a child or hating Autism. This is about dealing with the reality of what is very likely, a difficult situation. It's important for people to understand the ways that raising a child with Autism can impact the family unit. It's sadly taboo for a parent to be honest about the challenges they face while raising a child with Autism. I've called bullshit on that for the last eight or nine years that I've been a public figure in the Autism community. Reality isn't always pleasant and it's certainly not always pretty. The reality when it comes to Autism, exemplifies the above sentence. How can we expect the people around us to better understand Autism…

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May 3, 2017

Gavin / My thoughts

Emmett’s facing an uphill battle

The saga of Emmett and his rare fever disorder, continues. He's once again, home from school as a result of a fever, He slept good last night and woke up in a decent mood as well. Unfortunately, he is still running a fever and is unable to attend school again. I'm not sure how long this is going last, but I know I'm exhausted.

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May 3, 2017

Gavin / My thoughts

This is too amazing not to share

It's easy to find ourselves overwhelmed by all the terrible things going on in the world. There's so much negativity out there anymore, and twenty-four hour news cycle helps to ensure that we all know it. Recently, I shared a story about how Gavin accidently broke his sword while training in the early hours of the morning. Gavin was devastated because this sword played a key roll in his responsiblities to the Universe. Gavin has Schizophrenia and lives in a very different world than the rest of us. He sees and hears things that no one else can see or hear. It's not easy for any of us, least of all Gavin. A day or two after my entry about what happened was published, I received an email from someone,…

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May 3, 2017

Autism Parenting Insight / My thoughts

These are just words – Imagine having to live it

Today's been okay in some ways and a complete disaster in others. Lizze got off to class this morning without a problem. That's good because after the mixup yesterday, she was worried. Emmett was running a high fever again and let's just say, he's not in a good place. Everything is amplified for him right now, and he has a less than zero frustration threshold. That's proven to be challenging. Elliott went to school however, he wasn't comfortable being the only Gorski in the school, but that's something he just has to get over. Shortly after noon, I received a call from the school because Elliott had a blister on his foot that had recently burst and it hurt really bad. At the very same time, I'm texting with Lizze…

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May 2, 2017