Can we survive the escalating behaviors?

We met with Dr.  Pattie last night to discuss Gavin’s behaviors and the impact they are having on the family.  She watched the videos and described the behavior as institutional behavior.

This is very concerning because he’s continually escalating. Since this is willful behavior it’s even more concerning. The reason is because when doesn’t get the reaction he’s looking for,  he ups the anty.  The biggest concern is how far is he willing to go.

If he doesn’t get the reaction he’s wants,   by hurting himself,  what will he do next?

His meltdowns are becoming much more violent and they are moving in a direction that makes them more dangerous to those around him.

One of the things Dr. Pattie mentioned last night was that Gavin has absolutely no ability to deal with frustration.  When he gets upset or frustrated,  he launches into one of these meltdowns. Something else to worry about is there fact that he still has seizures,  even in their meds.

There are several triggers to Gavin’s seizures.  Things like hyperventilationsleep and lights,  all cause seizures in Gavin.

When Gavin is having one of his meltdowns,  he’s out of breath and at risk of having a seizure. However,  of we intervene,  then he will be getting the desired outcome from his behavior. If you were to look in the dictionary,  this is their very definition of being between a rock and a hard place or dammed if you do,  dammed if you don’t. 

I think you get there point.

I have no idea how to handle this behavior,  or if we can even handle these behaviors at home.

I will not allow him to hold us hostage in our home.  Knowing that he’s doing this know purpose does eliminate they guilt I once felt,  holding him accountable.  He has their power to stop this.  What he chooses to do with this ability remains to be seen…..

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aimee

Stupid phone! I was in the process of editing and it sent by itself. My point is, and that through no fault of your own what so ever! That what you’re doing simply is not working for him. Perhaps he needs a ‘come to jesus moment’ – to realize he will have to live somewhere else if he keeps terrorizing your family. I wish you the best of luck.

aimee

I’m sure you read ‘normal is a dryer setting’ – that’s how I found your blog. Look at how aggressive her son was, which ultimately led to him moving to a residential care facility. Where he is THRIVING!!! For the sake of your entire family I would consider it for the following reasons alone:
* the sexually predatory behavior
* the hideous influence on her younger brothers and the fact that they mimic him now
* that he ‘holds the house hostage’ with his temper fits; yet can control them when he wants to
*access to faster medical care
*and this will sound heartless, but a chance for your other 2 boys to thrive
*a break for the sake of not just you but your poor wife. Viewing a few youtube videos I have watched him during melt downs growling lizzie lizzie – it’s got to be hell on her nerves.
* you have already mentioned that everyone in the house, t yourself included, I’m afraid of this child

Mj

So sorry you are going through this. I’ve so “been there” I told you a bit about my son in a reply to your thinking about institution post. Now that I’ve read more I see you too are exhausting your possibilities. I have to remind myself that when I sent my son I had no choice but now there is guilt, fear and uncertainty. I also could not change meds at home and that was the underlying reason for sending him. But, the so called therapeutic school took almost a year to change his meds and when he was finally doing well my son wanted to taper off of one ( also for health reasons) and the so called therapeutic school did not really handle his transitional behaviors well. I should also tell you that last summer when he was home I had at least 3 ambulance/ police calls to the house to restrain him and take him to the ER. Don’t forget to use that option if you need it.
I don’t have time to write now but I think I will compile a list for you of pros and cons of residential placement and post it later.
In the meantime deal with the behaviors as consistently and calmly as possible and get yourself some much needed respite.

Lost_and_Tired

Thank you everyone. To answer the respite question, respite is pretty limited in the area. Gavin is on SSI so I'm pretty sure insurance would cover it. He has been doing really well for the past few months and whats happening now is relatively new. I mentioned to Dr. Pattie that this happens about the same time every year. It's like a 9 month/ 3 month cycle.

He does pretty well for 9 months and than all hell breaks lose.

We are also changing Psychiatrists because Gavin needs more than what his current doctor is in the position to offer. We will likely have to Cleveland for that, which sucks but he needs more than just a regular psychiatrist. Something that we are looking into is whether or not this is being caused by seizures. Seizures can cause behavioral issues. However, this may simply be who Gavin is. That's the heartbreaking reality that we are facing at the moment.

Much of the time, Gavin does really well. The problem arises when he is held accountable for his actions. That's when he snaps. Having said that, his meltdowns are seriously aggressive, even if only toward himself. It still has a lasting impact on the rest of us, and especially for Lizze's health.

Ideally, I would like to send Gavin somewhere and have him completely reevaluated. He would need to be taken off his meds and that could never happen in the home environment. I would like to see him reevaluated while off his medications in order to get a better understanding of what's going on. Something like this is a very real possibility. I don't like the idea, but at the same time I do. Does that make sense?

It's really easy to sit here and say that we need to send him away, however, it's a whole other thing to actually do that. We have come so incredibly close in the past… It feels like we're giving up on him and we don't want to do that..

Having said that, we absolutely need to preserve the health of the healthy……..

Thank you everyone for all your support 🙂

Mimi

I'm sorry; you have done everything humanely possible for Gavin and more. You and Lizze have given up your lives for Gavin. Unfortunately, you may face a heartbreaking decision between Gavin's comfort or Emmett and Elliot's safety. Since these behaviors are willful and Gavin seems unwilling to make better choices regarding his meltdowns and worse yet, his inappropriate behavior, drastic measures might need to be taken. Please know that this is not your nor Lizze's fault and know that you have done everything possible and more for Gavin. By his continuing these behaviors, most of all the inappropriate actions toward his brothers, he is sentencing them to a lifetime of "feeling ashamed" through no fault of their own. (As a victim of sexual abuse at the tender age 11; at 46 years old, I still struggle and I know the endless feelings of shame and unworthiness) And he is imposing a life sentence of misery for you and continued fibromyalgia flares for Lizze plus other health issues. Please think of yourselves for a change, you deserve more.

Megan

I am not trying to judge here at all, I just have asked this question several times on your blogs with no clarification. How come you don't have more respite care? Is it because insurance won't cover it? Again, no judgement! Just needing a little clarification here. 🙂 As for these behaviors, it sounds like there is no easy solution. Had Dr. Pattie suggested having some sort of in-home care, just to see how he reacts when someone outside your family tries to deal with these meltdowns? I'd be quite interested to see if it'd be the same. Good luck!

Dotdash

This sounds like classic "for want of a nail the shoe was lost, for want of a shoe the horse was lost, for want of a horse the battle was lost". You need more nails: more support, more respite care, better solutions for Lizze, more structured outside-the-house time for Gavin, more sleep. Otherwise, you will end up losing the battle.

I'm not sure what the possible solution is you are edging towards (sending Gavin — where? adoption? fostering? group home?) but it seems pretty drastic.

My firm belief is that you are doing an incredible job in a very difficult situation but since you seem to be asking for advice, my personal $0.02 is that you provide yourself with more nails so you don't lose a son.

Lenore

Your answers are in your blog. Now it’s your time to make a choice, do u want to live in this uncontrollable situation on your part, knowing the risks and dangers? Especially if they’re other children involved. He is not doing it on purpose, the Dr said he doesn’t have the ability to to deal with frustration. I always say if you ask for advice you already know the answer. You just need validation. It’s ok to do what’s best for the quality f life your family needs. God BLESS YOUR FAMILY!.’

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