I gonna be really honest, this week hasn’t started out well and doesn’t seem to be improving at all. I posted this morning about Gavin coming home, sick and in pain. We were all set to take him to Akron Children’s because Gavin appeared to be on his “death bed” for lack of better terms. We wanted to get him ANY and ALL help we could. We canceled ALL of Emmett’s VERY important appointments in order to help Gavin. I was sleeping when Gavin got home (Thanks Lizze). When this was brought to my attention I went to check on him in his room. I was a medic for a long time and I have cared for countless patients. I learned to tell the difference real pain and drama. With Gavin, I’m at a loss. I have no idea where he’s coming from. On one hand, he’s my son and I want to help him, however, it just doesn’t seem like some of these things are real.

Lizze heard him in the background while her mom was bringing him home this morning. He was moaning and really sounded like he was in pain. He gets home and lays down and everything seems to magically get better. Our concern is that he’s having bowel issues again. He was really backed up a few months ago, however, according to Gavin, he’s doing much better now…but is he really. He can’t remember to tell us when he goes to the bathroom. So, honestly we have no idea what the heck is going on.

Here’s where the frustration comes into play. If you ask Gavin something like, “how bad does it hurt”, he will say something like “well, if I jump around it hurts”. Well, that doesn’t really answer my question. I need to know HOW BAD IT HURTS, not, does it hurt when you jump. I realize that this isn’t his fault but it’s extremely frustrating. When he has his episodes of “chest pain”, I ask him very specific questions that I NEED the answers to, in order to determine our best course of action. When someone is experiencing chest pain you need to know “what it feels like”, for example, crushing or stabbing. If I ask Gavin, “when your chest hurts, what does it feel like?”, he’ll respond with something like “it feels like my chest is a shovel”. To him it means something but to the rest of the world it doesn’t really help at all. Then we come to the part of the drama. Gavin is VERY………dramatic to say the very least. If he has a paper cut he goes ballistic, screaming and yelling and dancing around. Yes, I realize there may be sensory issues at work as well but this is DRAMA. Even if we ask Gavin something VERY simple like, “have you pooped today”, he’ll say something like “I think so”. That doesn’t answer my question. We have to know YES or NO. We need to make sure the laxative is working the way it should.

This is where the frustration and even resentment starts to kick in. We canceled ALL of Emmett’s appointments today because of this. These appointments are SO important for Emmett to be at. We based our decision on Gavin’s apparent level of pain at the time. However, it was like some one literally flipped a switch and made everything go away AFTER we canceled Emmett’s appointments for the day. I decided that since he was now “felling much better” that we would postpone spending an entire day at Akron and just visit Dr. H, Gavin’s pediatrician instead. Whatever we do from there will be up to Dr. H. Seems like the best course of action. Once canceled there was no way to re-claim Emmett’s appointments. So Emmett loses out today and that ticks me off. Especially if all or most of this was drama.

Please don’t misunderstand, if Gavin is sick, in pain or needs help, I will get him ANYTHING he needs. We just can’t tell how bad something really is. It’s not that we don’t believe him when he says it hurts, we just don’t know how bad it actually does. I really hope everything is alright with him. I would just be SO much easier for EVERYONE if Gavin was a reliable source of information. It would be so much easier to help him if we knew where he was coming from. The truth is that Gavin is very much a mystery as are most things that he does or experiences. It’s just frustrating not knowing, what, if anything to do. Does that make sense?

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I know he may seem a little old for a potty chart but maybe something in the bathroom for him to at least check off on when he poops.  Also, the hurting when I jump thing – that is a possible signal for appendicitis.  Kids with bowels issues are much more likely to have a problem with it and I remember getting it out around his age.  I remember just not feeling right for a couple of days and then but, I knew something was wrong.  The pain came and went on that last day before they removed it.  Sometimes it was so bad I could barely walk and then I felt a bit better in and hour or two.  My son with ASD recently spent the night in the hospital because they suspected it but, it wasn't and they never found the source of the pain.  I think part of the reason they kept him was because he has ASD and can't be really clear about how much pain he is in.


No I haven't but that's a really good idea. I'll need special faces that work with ASD kids. Thank you


You try pictures, like they do at hospitals, the scale pictures of funny faces? Or some other scale that is Gavin Friendly?

Would love your thoughts, please comment.x
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