childhood disintegrative disorder Archives - Page 13 of 276

My kids deserve the best version of me

If I rated my sleep last night on a scale of 1 to 10, it would probably be a 4. I've had better but I've also had worse. I didn't get to bed until well after midnight and that is something I'm trying very hard to correct because I need to take better care of myself. Self-care is so important and yet it's so hard to practice. I've spoken about self-care countless times over the years and I'll continue to do so moving forward. It's just that important. Right now, the COVID19 lockdown has everyone in the country on edge. The stress level across the board is palpable. That level of stress increases exponentially when you're an Autism or Special Needs parent. It increases exponentially if you have a loved…

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April 19, 2020

COVID19 / Lockdown / My thoughts

Day 42: We’re still here

We're on day 42 of total COVID19 lockdown and I don't know, does that count as some kind of milestone? It probably should. 😂 It's been a pretty interesting day. The kids are holding it together and that's amazing. We're not without our challenges but it could absolutely be worse, at least in this exact moment. Gavin's IVIG Infusion supplies arrived this afternoon and that's always a big relief to get his new shipments. It especially stressful right now and having these show up on time means I can check them off my list of things I need to worry about. We should be having a relatively quiet weekend and I could really use a break from any unnecessary stress. I'm trying very hard to find a few moments throughout…

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April 18, 2020

COVID19 / Lockdown / My thoughts

There’s Good News and Bad News

I feel like we had a fantastic day, at least as far as living through a global pandemic and being locked down are concerned. I was relatively productive today and I'm proud of myself for that. The boys weren't too anxious today and Gavin was back to feeling like Gavin again after a very rough night of withdraw symptoms. I have an update to share about that and I'll get to it shortly. I was able to get the kids out for a short drive this afternoon. It took some coaxing but everyone agreed to go. We drove through the car wash and then around the park. We were going to stop by the garden center and walk around for a bit but the park was loaded with people, not…

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April 16, 2020

COVID19 / Lockdown / My thoughts

After 39 days on lockdown, I took my kids out for a bit

We've been in the house for 39 days now. With the exception of going out into the yard, we've not gone anywhere. We're staying home to protect Gavin, ourselves and all of you. I was able to convince everyone to leave the house for a little while today. We took the car through the car wash and went for a short drive. We didn't get out of the car and we wore our masks. We were safe and careful but also astonished by the insane amount of people not social distancing. There were people playing basketball, pickle ball and groups of kids riding their bikes and people watching the track in groups. Not one time did we see anyone wearing a mask and that's scary. People were well inside of…

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April 15, 2020

Clozapine / My thoughts

Gavin got really sick tonight

We had some moments today but overall, I feel like we had a good day. I wasn't feeling quite as overwhemled as I have been and I was able to get some groceries delivered this afternoon. I feel very lucky to have had that all work out today. Unfortunately, that's where the good news ends. Gavin woke up very early this morning vomiting. He dealt with it on his own and didn't wake me up until afterwards, so I want much help. I gave him something for the nausea and he was able to go back to sleep. He was very, very manic today and it was a bit much. Truthfully, he's absolutely harmless and it's more annoying than anything else. He just sorta wears me down. Throughout the day…

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April 15, 2020

Clozapine / COVID19 / Gavin / Lockdown / My thoughts

I’m seeing behavioral changes and some are concerning

I wanted to devote an entire post to talking about how Gavin's doing. I haven't really updated in a little while because it's been pretty much status quo. That's not a bad thing but unfortunately, it can't last forever. Gavin is officially off the Clozapine and seems to be withdraw free. That's a very good thing. He needed an extra step in the weaning process and that seems to have eliminated the negative symptoms from a week ago. The issue now is that Gavin is unmedicated and not easy to cope with. It is however, what I knew would happen but I didn't feel I had much of a choice. I thought I would share some of my observations in regards to changes in his behavior. The only way I…

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April 13, 2020

Inspirational Posts / My thoughts

To Whom This May Concern

Look, am I okay? No. No I'm not. I imagine if I asked you the same question (and I do almost every single night on Twitter), many of you would answer the same way. The world is absolutely crazy right now and a lot of us aren't doing okay. I'm not a unique case here. So many people are struggling right now. The big difference is that I'm openly sharing how I feel. Not everyone is comfortable doing that and that's okay. My kids and I have been staring at each other for 37 days now. The house feels like it's shrinking and I'm exhausted. There are times that I really struggle and there are times that I'm doing okay-ish. At least as good as one can do under these…

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April 13, 2020

COVID19 / Lockdown / My thoughts

I’m without direction today

It's 11am EST and 2 of my 3 kids are still sleeping. I'm slowly starting my day but feel like I'm lacking direction. Poor Emmett was having nightmares throughout the night. He's been glued to me all night long. If he wasn't wrapped around my arm, he'd panic. I really need to find a way to get him back into his own bed. He was still struggling with his mom leaving when this all happened. Now everything is much more complicated and difficult. I'm pretty sure today is Sunday, which also means it's Easter. For the first time ever, we're not celebrating. No one feels like celebrating and frankly, I'm just too tired at this point, to really care one way or the other. I'm not proud of that and…

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April 12, 2020