Blog - Page 212 of 1611

This #Autism Dad is not coping well with the incessant talking today

There are so many things that can be frustrating and/or overwhelming when it comes to being an Autism/Special Needs Parent. Most of them are things that I've had to learn to either ignore or cope with in some other way. If I didn't, I'd lose my mind. I have days where I can cope fairly well but there are also days that I seriously struggle. On any given day, one of the hardest things for me to cope with is incessant talking. I'm fully aware that many parents have never heard their child talk and I have some experience in that arena with Emmett. My heart goes out to them. I'm not intending to be insensitive to that and I'm incredibly grateful that my kids are verbal. The reality I…

3 Comments

October 21, 2018

Cleveland Clinic / Lizze / Migraines / My thoughts / Neurological Center for Pain

How the @clevelandclinic gave us hope

It's been a couple of days and I've still not gotten around to updating you on Lizze's appointment at the Cleveland Clinic. As a quick reminder, she was at the Neurological Center for Pain, seeking help for her migraines. Lizze went into this appointment with very, very low expectations because for the most part, she's without hope that she will ever live a day without pain. I get where she's coming from and it breaks my heart to see her go through this. That said, I'm carrying the touch in regards to hope because I cannot accept a reality in which she can't find relief from her migraine. She deserves to exist without pain and I will keep working towards that end. We arrived a bit early but only had…

4 Comments

October 21, 2018

Autism Parenting Insight / Emmett John / My thoughts

Emmett had a great time

Emmett had an amazing time at his friend's birthday party today. It was at Chuck E Cheese and while it's not very adult friendly, the kids loved it. ☺ I hung out the entire time and met some the parents. They were all super nice and it helped to offset the fact it was at Chuck E Cheese.. Lol This is a not a sensory friendly place by any stretch of the imagination. I know Emmett will likely experience some fallout but at least he had fun. I don't have sensory processing disorder and it's overwhelming for me. I can only imagine what it's like for those that do. Anyway, it was largely positive experience and we need more of those in our life. ☺

3 Comments

October 20, 2018

Autism Parenting Insight / Emmett John / My thoughts

Emmett has another birthday party today

This is the second Saturday in a row that Emmett has a birthday party to attend. I'm thrilled that he's got the opportunity but two weekends in a row is a bit much. 😜 This afternoon he has one of his best friends party and it's at Chuck E Cheese. It'll be just Emmett and I because this is way too loud for Lizze. I'm not personally a huge fan of the noise and the crowds but I don't have a constant migraine or severe social anxiety. Hopefully, this will be fun for Emmett and his friend. I'm so happy that he's able to do this but I not so happy about the inevitable overstimlation and meltdowns that will follow. Par for the course I suppose. ☺

2 Comments

October 20, 2018

Gavin / My thoughts

You won’t believe where we found his missing #IVIG Infusion supplies

After some serious searching in every conceivable place, we finally were able to locate most of the missing supplies. We found 4 sets of tubing and 2 needle sets underneath the small couch in our dining room. It was the last place we looked because it didn't occur to us that they could have been crammed through a half inch gap between the couch and the floor. I can barely fit my hand under there. I don't know how or why they were under there and at this point, I honestly don't want to know because it will just make things more frustrating for me. We're still missing a needle set and we'll continue looking for that. The only thing I know for sure is that I'm grateful we found…

1 Comment

October 19, 2018

Autism Parenting Struggles / Gavin / IVIG Infusion / My thoughts

This is a perfect example of why being a #specialneeds parent can be so exhausting, frustrating and overwhelming

We're not off to a good start today. I basically woke up to Elliott and Emmett fighting and it went downhill from there. I could have weathered the fighting but then Gavin entered my morning with news that very much pushed me over the edge. Gavin casually approaches me and tells me that he's only got enough tubing for one last IVIG Infusion. I told him that's not possible because as you can see in the image below, there are supplies for 8 complete IVIG Infusions for the month of October. Maybe you can't see that from the image but I confirmed upon delivery, that he was not shorted anything. Gavin should have enough supplies to do 4 more IVIG Infusions this month and he's basically saying that he's missing…

0 Comments

October 19, 2018

Autism Parenting Insight / My thoughts

Sometimes it’s really hard to remain positive

This has been a rough week for us. Actually, it's been a rough recent history for us. We really, really, really need to chalk up some victories here because moral is getting low. There are some very positive things that have happened recently. The mass in Gavin's arm turned out to be nothing and Lizze's appointment with the Neurological Center for Pain at the Cleveland Clinic went amazingly well (more on that later). Those are big wins but the losses are big as well and they often outnumber the wins. Here's just a few examples of what I'm currently trying to cope with. It looks like we're going to get buried by this homeowners claim for the storm damage. At this point, I can't see how this will work out…

2 Comments

October 19, 2018

Cleveland Clinic / Lizze / Migraines / My thoughts / Neurological Center for Pain

At the @clevelandclinic Neurological Center for Pain hoping for a miracle

Lizze and I have safely arrived at the Cleveland Clinic's, Neurological Center for Pain. She really scared that they won't be able to help her. She hasn't been in - nor does she want to go on pain medication. She want the pain to stop, not just be masked. We are hoping that she can try a medication called Aimovig. It came out earlier this year and is the very first medication designed specifically for migraines. It's not a medication for something else that used offlable to treat migraines. It's supposed to be a big deal and we're hoping she can try it. She's had the same migraine for close to 7 years now. It never goes away and it only slightly lessens or gets worse. She's desperate for relief…

6 Comments

October 18, 2018