Gavin / My thoughts

Something is happening to Gavin and it’s not good :(

Unfortunately, the news I have to share tonight is not of the positive kind.  Over the last few days, Gavin has been experiencing a rather worrisome new symptom. What we're seeing could be related to his autonomic dysfunction, epilepsy, neuromuscular issues or childhood disintegrative disorder. It could also be completely unrelated to anything we currently know about and is instead something altogether new. Gavin has been losing control of his legs. What do I mean by that? I mean that he will be walking and then his legs just stop listening to his brain. That's actually how Gavin explains it.  It's to the point that he's afraid to use the steps because he's afraid he'll fall.  This is something that I need to speak to his pediatric neurologist on Monday…

12 Comments
November 19, 2016
Autism Parenting Woes

I’m really struggling with patience today

It's been one of those days where Autism and ADHD are totally kicking my ass. I love my kids to the moon and back but they are absolutely driving me crazy.  Gavin's repeating himself over and over again. Elliott is just melting down like there's no tomorrow and it's over every single tiny thing. Emmett's really the only one keeping his head above water today.  When Elliott gets like this, there's absolutely no reasoning with him and he has to be sent to his room to calm down. Sometimes it works and other times it doesn't. Today has been one of those days where is hasn't been working.  I'm very preoccupied with a new problem that Gavin has been experiencing over the last few days that I haven't shared publicly…

2 Comments
November 19, 2016
Gavin / My thoughts

It’s like being throat punched back into reality

Lizze and I made arrangements to take Gavin to see a movie this afternoon. The boys went to their grandparents for a few hours after school, in order to make this possible.   I was really excited to have the three of us spend some time together outside the house and Gavin loves movies.  As we were pulling into the parking lot of the theater, my heart sank.  Gavin informed us that his friends are going to meet us there. We asked how they were going to pay for tickets.  Gavin explained that he has a contact that works in the theater and that contact makes all the arrangements for his friends. I call them (but never to his face) his invisible group of super best friends because I have to…

0 Comments
November 19, 2016
Inspirational Posts / My thoughts

Will you stand with me? 

While I avoid politics on this site, I feel compelled to take a stand and use my platform to share a message that I hope with resonate with my readers.  I don't care who you voted for in this election. Right or wrong, I believe that we each voted for someone we felt would do right by our country and its citizens. Time will tell if the right person was chosen.  In the meantime, I would like to ask that we not let our differences keep us apart.  I'm saddened to see the direction this once great country has taken over this recent presidential campaign. I've seen more hate, racism, bigotry and intolerance than I had thought still existed, at least in the United States.  Maybe I was naive because…

9 Comments
November 18, 2016
Elliott

Today’s Victory: One big reason I’m proud of my son

I want to take a few minutes and share how proud I am of Elliott. I'm proud of all my kids, sometimes for different reasons but those reasons are endless.  Today I want to talk about how Elliott has overcome something that he wanted nothing to do with.  We had signed the boys up for the after school program, at Emmett's request. After talking to Dr. Pattie, it was decided that it was best to make Elliott participate as well because he needs and would benefit from the experience.  Elliott was very, very against this and didn't shy away from telling us all about it.  Having now gone three or four times, he's now actually enjoying himself and while he won't admit it, he wants to keep going.  I'm so…

4 Comments
November 17, 2016
Emmett John / Meltdowns / My thoughts

I don’t have any shits left to give today 

I was going to try and find some witty way of doing this post. I was going to try and find some humor in it because I'm trying to be positive. Unfortunately, I just can't make that happen without being totally disingenuous and I'm not going to do that.  Today has been a trial of patience for both Lizze and myself. It's only 8:30am and I'm already done for the day.  Here's the deal...  Emmett woke up in a good mood. He woke up early and climbed into our bed to snuggle. Who isn't up to snuggle one of their kids in the morning? In fact, I thought to myself, oh thank God he's in a good mood today because that will make for a good morning.  Unfortunately, that prediction…

8 Comments
November 17, 2016
Bad News / Clozapine / Gavin

I have bad news about Gavin

As I shared earlier, Gavin had an appointment today with Dr.Reynolds, his psychiatrist for over an decade.  The trip to this appointment was incredibly difficult for Gavin because his bladder issues were ramped up and causing him a great deal of distress. Thankfully he made it without incident..  His appointment went as well as it could, considering why we were there. We were there to both follow up on meds and discuss Gavin's current status. I'm going to try and make this short and sweet.  We talked about how Gavin's delusions and hallucinations are as strong as ever. There isn't a significant difference between his status while on 600mg of Clozapine and what it is now while on 800mg of Clozapine per day.  This is a scary thing for many…

8 Comments
November 17, 2016
Emmett John / Meltdowns / Sensory / Shoes and Socks

Zero to Meltdown

I talked this morning about how awesome it was that the boys got themselves dressed and ready for school before we even woke up. That's all very true and something I'm quite proud of them for.  Unfortunately, that's where the good news ends and the meltdowns begin.  Emmett was fine until it became time to put something on his feet. He's been wearing slippers to school without socks for about a week or so but for some reason, he wasn't able to tolerate them today.  He went from having a great morning to an ear drum shattering meltdown in nothing flat.  We finally ended up settling on flip flops but packed his slippers and a pair of socks should he change his mind.  The whole thing lasted roughly twenty minutes…

4 Comments
November 16, 2016