One of the things many special needs parents are lacking is a friggin instruction manual for their often times, quite complicated children. I realize that no child comes with a set of instructions but most parents are able to muddle through. When it comes to special needs children, it's almost a cruel joke that they don't come with at least guidelines. I mean honestly, who do we need to talk to about this? Special needs parenting is hard enough as is.  Parents like ourselves, could benefit from a basic set of guidelines or in structures. At least I know I would. When it comes to Gavin, I find myself in desperate need of a goddamn instruction manual. With everything he has going, he's so complex and so unique that no…

You know something? Despite all the screaming he's capable of, Emmett is the absolute sweetest 4 year old I know.  Admittedly I'm probably a smidgen biased but what parent isn't? Anyway, today Emmett fell asleep on the couch patiently waiting for Elliott to get home from school so they could play together.  He looks so peaceful.  Incredibly uncomfortable but peaceful nonetheless.  :-) Emmett John, Daddy loves you so very much.  :-) This site is managed via WordPress for Android, courtesy of the @SamsungMobileUS Galaxy Note 2 by @Tmobile. Please forgive any typos as autocorrect HATES me. ;-) Check out my #Autism Awareness Store to find really cool and unique #Autism Awareness Clothing and Accessories, designed by me. ;-) For more ways to help the Lost and Tired family, please visit…

Elliott brought home another masterpiece from school today.  I'm not sure what inspired this gem but I like it... :-) He's really in to drawing pictures lately and giving them away.  He's such a total sweetheart and I love him to itty bitty pieces.  :-) This site is managed via WordPress for Android, courtesy of the @SamsungMobileUS Galaxy Note 2 by @Tmobile. Please forgive any typos as autocorrect HATES me. ;-) Check out my #Autism Awareness Store to find really cool and unique #Autism Awareness Clothing and Accessories, designed by me. ;-) For more ways to help the Lost and Tired family, please visit Help the Lost and Tired Family.

Gavin's only been home since lunchtime but already, my fears are being realized.  Things for Gavin are worse than I realized.  I've been monitoring Gavin's heart rate, either through the monitor that syncs with my phone or his heart rate watch. Gavin while sitting, had a heart rate of around 130/bpm. He simply stood up and walked around.  I'm talking just walking and nothing even remotely crazy.  His heart rate jumped to 150/bpm. When I have him sit down and rest, it instantly drops to 80/bpm. This is why it's so important that he be watched so closely.  If not, things like this slip by without being detected until it's too late.  I'll be honest, I'm really worried about this because there isn't anything we can do but park him…

Lizze and I have decided to move Gavin back home.  That probably comes as a shock to many of you and it was a very difficult decision for Lizze and I to make.  I've talked many times about having to pick the best of all the worst worst options. This is one of those times.  Gavin's health is going down hill and to be perfectly honest, the only way we can keep tabs on things is if we do it ourselves. We need first hand knowledge of his daily life.  With the current set up, that's just not possible.  Today when I brought Gavin home for a dentist appointment, we had to cancel it because he was not stable enough to even ride in the car.  Lizze and I both,…

We are supposed to be taking Gavin to the dentist this afternoon.  I actually pulled him out of school after my meeting because it didn't make sense to go back to get him in a little while.  Plus we have to travel out of town to go to the boys dentist.  Anyway, I noticed right away that Gavin is off today.  I don't mean off like poorly behaved.  I mean off as in something isn't right and Lizze and I are both concerned.  Gavin's pretty wobbly today,  meaning he's having a hard time with his balance. He also seems a bit disoriented as well.  He's saying things that aren't making any sense.  I don't know what to do.  The dentist is just a check up, nothing major but he's missed…

Gavin had a pretty good day. He was apparently tired but only slept for a little while.  I'm not sure about the whole bumping his eyebrow thing.... The point of what is supposed to be done by documenting his day is to make sure we know how his health is impacting his education.  I'm sure bumping his eyebrow was a rough experience for him but overall he had a positive day.  The benefit to having the teachers communicate these things to us is so we know what's going on when we aren't present. Is he too tired to stay awake? Is he having chest pain? Is he falling while taking the stairs? I was teasing about the eyebrow thing, because it doesn't seem important but it's something I can ask…