Read more about the article It can be so exhausting to be patient with your special needs child :(
Gavin / My thoughts / Parenting Frustrations

It can be so exhausting to be patient with your special needs child :(

It's heartbreaking but I have to reel in some of Gavin's independence:( Gavin's current capacity is such that I have no choice but to start taking away some of the independence he has earned over the last year.  I've said a few times recently that I'm seeing regression once again.  This is kind of the status quo for Gavin. He will do really well and then begin to regress again. Clearly this is an ongoing issue.  For most of the last year, I've had Gavin responsible for his medications, for the most part anyway. He would take them when it was time and most often remembered to do so on his own.  Last night he informed me that he had not taken his inhaler while at his Mom's house because…

3 Comments
August 23, 2015
Read more about the article I’m frustrated with Gavin tonight
Elliott / Gavin / My thoughts

I’m frustrated with Gavin tonight

I'm frustrated with Gavin for a couple of reasons. Elliott informed me that the boys were picking out snacks while they were at their overnight visit.  Gavin picked out some hazelnut cookie stick things.  Elliott didn't realize that they were Gavin's at the time and asked if he could have one. He was told that they were Gavin's and he would have to ask him.  Apparently, when Elliott asked Gavin if he could have one, Gavin told his Grandma that Elliott was allergic to hazelnut and couldn't have one or some thing like that.  That was simply not true. Elliott is not allergic to hazelnut and never has been. He's only been allergic to almonds but for awhile, we had to avoid tree nuts all together. That restriction though, has…

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August 22, 2015
Read more about the article Prayers Needed: Gavin may have Jalili Syndrome 
Cleveland Clinic / Gavin / Thoughts and Prayers / YouTube Video

Prayers Needed: Gavin may have Jalili Syndrome 

The video below will provide more details but if you just want to know what's going on, here's the deal.  I received a phone call yesterday from The Cole Eye Institute. This is the premier eye center at The Cleveland Clinic. It was a genetics counselor working with one of Gavin's precious doctors.  Gavin's been to The Cole Eye Institute a few times for very detailed exams.  These exams were looking for neurological issues that would hopefully give us a direction to go in. He eye exam was fine but they noted issues with his teeth that we already knew about.  Gavin is lacking enamel on some of his teeth and has had to have metal caps installed as a result.  http://youtu.be/W6OMwtqw99I They took detailed pictures of his teeth as…

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August 22, 2015
Read more about the article My son with #Autism has bizarre pain perception 
Gavin / My thoughts

My son with #Autism has bizarre pain perception 

My boys all have their unique challenges but one of the ones that's the difficult for me to personally understand is pain perception. This particular challenges is isolated to Gavin alone and I'm really grateful for that.  Well, I'm not grateful he has this issue but instead that it doesn't impact the other boy's as well.  Anyways, this particular issue is very much sensory based from what I understand and I don't think there is much that can be done to help him with this.. Here's the problem. Ever since Gavin was little, he would freak out over the most minor of injuries, like a hangnail or paper-cut. More serious injuries like a sprained ankle, serious cut or dislocated joint.. He didn't like any of these but never gets too…

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August 21, 2015
Read more about the article Waiting for blood work 
Blood Work / Gavin

Waiting for blood work 

We had to get up extra early this morning and head out to get Gavin's biweekly blood work done. This blood work is required before he can get another two weeks worth of his antipsychotic, Clozapine. The process sucks but it's a necessary evil and I understand why it has to be this way.  The boys are in the back seat and waiting isn't exactly their strong suit.  Emmett is playing the same song over and over and over again on his tablet O_o.  Elliott is knee deep in his list of requests for the morning and I can't indulge any of them but that doesn't stop him from relentlessly asking. I'm pretty sure that I'm gonna lose my mind here.    

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August 21, 2015
Read more about the article Gavin had his first meltdown in almost a year :(
Gavin / Meltdowns / My thoughts

Gavin had his first meltdown in almost a year :(

While at therapy tonight, Gavin was building with this castle set. It wasn't going together easily and he began to get frustrated.  I asked him if he was okay and suggested he take a break.  Gavin got really upset and started standing on the side of his ankles, if you can picture that. When he does this, it looks like his foot was just snapped off.  Anyway, he was starting to hit himself but nothing too serious.  I tried to de-escalate the situation but the meltdown engine had already turned over.  This is scary for me because I'm beginning to see him slipping more and more. On the positive side and much to Gavin's credit, this wasn't anything super significant.  Dr. Pattie and I eventually back out of it and…

2 Comments
August 20, 2015
Read more about the article Today’s Victory: Putting Others First
Gavin / Today's Victory

Today’s Victory: Putting Others First

This is a bit early for a Today's Victory but I was so impressed that I pulled the trigger and gave the award to Mr. Gavin.  We all know how picky Emmett is about everything in his life and if you don't, he's really, really, really, really picky. I'm talking so picky that it's very often, literally impossible to meet his needs, especially when it comes to food.  Emmett's in a fever flare and so he's eating a lot of ice cream and Popsicles because his mouth hurts so badly.  He's so picky about the color of the Popsicles and the condition they're in. For example, if the Popsicle is bent, cracked or otherwise imperfect, he won't be able to eat it.  Gavin asked for a Popsicle this afternoon and…

11 Comments
August 19, 2015
Read more about the article My heart breaks for Gavin tonight :(
Gavin / My thoughts

My heart breaks for Gavin tonight :(

Gavin's been through so much in his 15 years on this Earth. If fact, he's been through more in his 15 year than most will in an entire lifetime.  Do you know how many times he's complained over the years? Zero, as in not one time. Gavin just takes whatever's dealt him and rolls with it. It's truly amazing.. It's really hard for me to see Gavin suffering and there is nothing I can do to help him.     Gavin is one of those kids who just can't catch a break. His emotional and physical health are so complex that no one really knows for sure what to make of it. One of the things we do know for sure is that he doesn't have a functional immune system of…

3 Comments
August 17, 2015