Common Variable Immunodeficiency Archives - Page 150 of 260

Such is the life of an #Autism family

As many Americans are already aware, we're halfway through a 3 day weekend. We're having a family cookout today in honor of Labor Day. It's going to be hot out and the kids are probably going to be a handful when we get home but we don't get to see everyone all that often. I have to make it to the store before we have to leave because I need to buy a new hat. The one you've seen me wearing in all the pictures literally fell apart like paper when I tried to wash it last night. Being among those who sport a shaved head, I need the protection from the sun. Anyway, I don't think I'm going to end up walking today but I will in the morning.…

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September 2, 2018

Confessions / My thoughts

I confess to sometimes feeling crushed by my #SpecialNeeds family

You may or may not know this but I have quite a bit in my plate. I try so hard to do right by everyone in my family but there are times I become do overwhelmed by their needs, I feel like I'm being crushed. I'm feeling crushed right now by the weight of everything. Lizze is living with high functioning Autism, PTSD, ADHD, chronic pain, fibromyalgia, depression, ehlers-danlos, bipolar disorder and untreatable daily migraines among others. Gavin is living with chronic pain, childhood disintegrative disorder (very rare, regressive form of Autism), common variable immunodeficiency, epilepsy, schizophrenia, asthma, and a very rare autonomic disorder among others. Elliott is living with Autism, sensory processing disorder, depression, severe anxiety, ADHD, food allergies and possibly bipolar disorder. Emmett is living with Autism, anxiety,…

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September 1, 2018

Emmett John / My thoughts / School / Victories

Emmett’s teacher told me the most amazing thing today

This will be quick because I'm going to bed but I wanted to share this first. When I picked up the boys from school this afternoon, one of Emmett's teachers came out to talk to me for a minute before dismissal. She wanted to me to know how much they love having Emmett in their class. She went on and on about how he's such an amazing role model for his classmates. Apparently, he's even tutoring some of the kids in his class. He was given a chance to go outside and play but instead chose to stay in and help some of his classmates. ☺ That's such an awesome thing to hear about one of my kids. We already know that our kids are amazing but it's nice to…

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August 31, 2018

Autism Parenting Struggles / Elliott / Meltdowns / My thoughts

We’re seeing a significant increase in #Meltdowns

There's so much going on in my life and it's becoming more and more difficult to write about it because it's exhausting. I keep thinking about doing more vlogger type things but I don't know. Anyway, Elliott's going through a very, very, very difficult time. The teenage years aren't easy for any kid to deal with but factoring in things like Autism, ADHD or Anxiety and life becomes truly difficult. Elliott is absolutely the sweetest kid in the world and he always has been but he's also struggling more and more. We spoke with Dr. Pattie about this again on Tuesday and from where I sit, I'm not even sure Elliott knows why he's so miserable. He'll rattle off things that are upsetting him but it just doesn't seem to…

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August 31, 2018

Autism Parenting Confessions / Gavin / My thoughts

Every single day, I lose more of my son and it hurts beyond words

There's so much to catch you all up on and frankly, some of it is too difficult to talk about. I've tried writing this several times now and very quickly find myself entirely too overwhelmed to actually finish anything. Rather than giving up, I've decided to write what I can, stop when it's become too much and publish it, regardless of how it sounds. As a result, this may sound a bit choppy or jumbled but that's because it's not easy to even think about this stuff, let alone write about it. Deep breath...... Gavin stepped onto the scale today and has lost more weight. He barely weighed 119 lbs, fully dressed and already having eaten breakfast. That's at least a one pound loss since yesterday and it's worrisome. Lizze…

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August 31, 2018

Feeling Blessed / Fit4Autism / My thoughts / Weigh-in Wednesday

3 reasons I’m feeling incredibly blessed today

It's no secret that my life is hard. It just is. It's no secret that I struggle at times. I just do. It's no secret that if it weren't for bad luck sometimes, we wouldnt have any luck at all. It's how I feel. Having said that, there are times where I feel extremely lucky or even blessed and today is one of those times. There are currently three reasons why I'm feeling so blessed right now..and here they are. Work Money's really tight since some recent changes to my income occurred. When I mean tight, I mean I can have less than $10 to my name at times. I'm not proud of that but it is what it is and I know I'm doing the best I can. I…

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August 30, 2018

My thoughts

. @GaiaWearables is looking to prevent #Meltdowns and they need your vote

Hi everyone! We need YOUR help getting selected to host a panel on how technology can empower the autism community at the South By Southwest Conference 2019. Our team, GAIA Wearables, intends to create wearable technology that can prevent meltdowns amongst children with autism. At the moment, the only wearables intended for the ASD community are reactionary, prevention is the next step. The hope of this panel is to not only explain and expand upon the effectiveness of preventative technology, but identify how such technology could launch the entire community into a future of unprecedented, personalized treatments. This panel is really important for us to continue leading provoking conversations within the autism tech world. In order to be selected host a panel and participate in this conference, we need be…

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August 28, 2018

Inspirational Posts / Mental Illness / My thoughts

Getting help for #mentalillness is NOT weakness

I've been very open about my struggles with mental illness and I'll continue to be that way. There's absolutely no shame is struggling with mental illness. Getting help for mental illness is also not a sign of weakness. It's 2018 for God's sake, you'd think this would be more easily understood but sadly it's not. Unfortunately, there's still a great deal of judgmental and ignorant people out there. They are critical of what they don't understand and nothing you or I could say will change that. I think we've made progress in mainstreaming the discussion of mental illness but we have a ways to go. If you're struggling with a mental illness, please don't be afraid to get help. Admitting you need help is NOT a weakness. The only weakness…

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August 28, 2018