childhood disintegrative disorder Archives - Page 161 of 276

Do I have less patience now?

Gavin had therapy tonight and one of the things that I mentioned to the therapist is that I just don't have patience for Gavin anymore. We discussed that briefly before something occurred to me. Perhaps this is a philosophical question but it's something I think Special Needs parents should keep in mind as their kids get older and perhaps more challenging. First of all, let's be crystal clear. I'm as far from perfect as any one person can be. I'm human and I have very human limits. That being said, the people who know me in real life, have been saying forever that I have the patience of a Saint, especially when it comes to Gavin. In all fairness to myself, I did have a seemingly endless supply of patience.…

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July 26, 2018

Family Fun / My thoughts

Hopefully we can pull this off today

I don't know what we're doing today for sure but Lizze wants to go walking. That's a very good sign for her because she's normally in so much pain that walking isn't in the cards. The boys have requested that we go all the way out to Quail Hallow but I don't know if Lizze will be up for that. If she's game, I'm happy to make the drive. ☺ Anything we do will be after Gavin's therapy session this afternoon. It's important to me that we do these kinds of things and if we can make it happen today, I look forward to spending the time with my family.

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July 25, 2018

Akron Children's Hospital / Gastroenterology / Gavin / My thoughts / Surgery

We received confusing results from Gavin’s surgery and I have 4 questions that need answered

We received some confusing information regarding the results of Gavin's endoscopy and colonoscopy that took place last Friday. I received a phone call explaining that for the most part, his results were good. He does have what the nurse called mild gastritis but there wasn't an explanation for it. We knew all of this already because the doctor who performed the procedures explained everything at the time. What we are waiting for was the results of the biopsies and a plan for moving forward. The nurse on the phone was very nice and explained that we could keep him on the Nexium, which was confusing because he hasn't been in Nexium in at least eight years. I explained that and the nurse needed to check with the doctor in order…

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July 25, 2018

Autism Parenting Insight

I’m struggling to find my voice

I've been writing for almost a decade now. There have been highs and lows along the way but I do my best to share our journey, despite the daily challenges. One of the problems with doing this for as long as I have is there are times where I simply burnout and sorta lose my voice. I don't mean lose my voice in the traditional sense though. When I lose my voice, I mean that I feel as though I've lost my direction in regards to writing. Sometimes I'm just too exhausted to make heads or tails of my thoughts, let alone put those thoughts into words. One of the things that I struggle with sometimes is keeping up with my writing and conveying my thoughts or feelings in ways…

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July 24, 2018

Akron Children's Hospital / Elliott / My thoughts

We’re beginning a new journey with one of our kids

I haven't spoken about this in awhile but we are very likely beginning a new journey. Frankly, it's something that I have been desperately trying to avoid for a number of reasons, one of them being I simply didn't want to face it. That journey is exploring the possibility of Elliott being bipolar. He's on the shortlist for this to begin with, and the generic history is definitely there on both sides of the family as well. I've spoken about these concerns in the past but we were taking a wait and see approach. Unfortunately, its become more of a concern as more and more behaviors bubble to the surface. The problem is finding a qualified psychiatrist in the area or even outside the area. It's nearly impossible because there…

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July 24, 2018

Autism Parenting Confessions / My thoughts

It’s going to be a long day

The kids have been a handful today already and I'm tired of the challenges faced at each and every turn. I love my kids but they are driving me crazy. While I know that's a short trip, it's a bumpy ride. I haven't heard much from Gavin today. He's been down to eat breakfast and take his meds. He then took a nap before coming back down to eat lunch. For some reason, the boys are being exceptionally loud today and I want the noise to stop. Unfortunately, I don't see any relief coming until bedtime. Hopefully, I'll be able to sneak my walk in after dinner but it's going to be a long day.

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July 24, 2018

Autism Parenting Confessions / My thoughts

I feel like I have to speak 5 different languages in my #Autism house

There are times that I really struggle with being the only person in my house without Autism. Today is one of those days, more specifically, tonight is one of those nights. Communication across the board is always a challenge, be it with Lizze or the boys. I almost always feel like the odd man out because while I can communicate exceptionally well with most people, communicating with my own family is not easy. Each person has their own way of communicating and in many ways, it's like I have to speak five different languages. It's exhausting having to always choose my words with caution. Some of my family is very literal, meaning if I say I'll be there in a minute, they will count to sixty and want to know…

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July 24, 2018

My thoughts

There have been challenges but we’re surviving

It's been a generally lazy kinda day here. We had a long weekend and wanted to take the day to sorta decompress. Thus far, we've had our share of challenges but everyone is doing okay at the moment. I'm hoping that the rest of the evening follows the current trend. I don't know what we have planned for the week, if anything at all. The boys want to go hiking and that's something we can probably pull off. Perhaps we can find a location we haven't been to yet. ☺

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July 23, 2018