I have some bad news to share tonight and it breaks my heart

While we were doing our running around today, Gavin shared something with me that made my heart sink into the pit of my stomach.

The following isn’t an exact quote but you’ll get the jist of it.

Out of nowhere, Gavin told me that he received a phone call from Donatello, of the Teenage Mutant Ninja Turtle’s this morning around 6am. Apparently they needed to schedule an emergency meeting with Gavin because April O’Neil’s DNA was mutating out of control and they needed Gavin’s help to save her.

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As telling me this, he has the most serious expression on his face because it’s very clear that he takes this very seriously.

I’m driving down the road, trying not react in a way that makes him feel like he can’t tell me about this.  I was fighting back tears as he went on to explain every aspect of how this all went down. 

He explained the the Ninja Turtle’s needed to use his lab to create a cure for April.  I asked him where his lab was and he told me it was on the first floor

When I asked him where the first floor was, he explained that it was underneath the robot wall.

I’ve learned over the years to tread very lightly in these situations because if he feels that we are upset in any way, he’ll shutdown and we won’t know where he is or what he’s going through. 

It’s also important that I not put words in his mouth.

The questions that I asked him are geared towards trying to get a better understanding of just how bad the situation is and weather or not this needs immediate intervention. 

Childhood schizophrenia is extremely, extremely rare and so there isn’t a great deal known about it.

Gavin is very therapized and knows what he should and shouldn’t say.  He’s very careful to label everything that he’s experiencing as just part of his imaginary world’s. He’s been hospitalized enough for psychotic breaks in the past, that he knows that if he says this is all imaginary, people are less worried.

I made sure to explain to him today that if he thinks all of this stuff is real, he needs to be honest with us.  He’s not in trouble and it’s okay to think this is real, we just need to have him be honest with us so we can make sure we do what we can to help him. 

We are going to have to watch him closely to make sure this doesn’t get worse. 

I’m so tired from everything today and I’m sick to my stomach just thinking about how this could get much much worse.

This is so scary because he is physically at the end of road when it comes to antipsychotics. There is nothing left for us to do, medication wise because there isn’t any other medication that’s worked, or worked for long. 

My eyes are begging me to go to sleep.  Please forgive any typos.  I’m on edge and ha entire slept since Wednesday night.

Please say a prayer for Gavin… Hopefully he’ll stabilize on his own. 

This site is managed almost exclusively from my Samsung Galaxy Note 3. Please forgive any typos as auto-correct HATES me. 😉

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MissShuganah

Lost_and_Tired Does your son like Cheerios? Oats and oatstraw good for him. And it would be mild. Oatstraw infusion… basically tea.

MissShuganah

Lost_and_Tired Have you thought about herbal medicine or other alternative medicine? If Western medicine is failing him, maybe go East?

Lost_and_Tired

MissShuganah nothings out of place. I’m always open to new ideas 🙂

MissShuganah

Lost_and_Tired I hope this isn’t out of place… Would any alternative medicine help?

Lena Finley

🙁 prayers for u all

Karen Simpson

((Hugs))) and positive vibes xx

Ellen Friedlander Martinson

Praying for all of you.

Colleen Kenny Murphy

Prayers for all of the family. Warm hugs.

Andrea Williams

poor thing

Jude Leobold

My prayers are with you all…

IndieCoach

Trina_Stewart Lost_and_Tired I’m so very sorry.

VickiHillRiedel

Rob, I am sorry that you and Gavin are going through this. My son,  now 26, also has ASD + schizoaffective and more, all of which started in early childhood. He went through many hospitalizations, residential treatment facility placements, meds and more meds, etc.

And he is now stable. Has not been hospitalized in nearly 5 years. Takes a tiny dose of just 1 med. (At times he was on up to 8 meds, for years at a time.)

So I am here to tell  you that the combo of ASD, schizoaffective and psychosis does NOT necessarily mean things will just get worse. I’m not going to  lie to you – raising my son through puberty was difficult – very, very difficult. But once he was past puberty, we were able to get him stabilized on medication, then gradually reduce the amount of medication.

Two pieces of advice:
1) Voices and delusions are symptoms, just like fever is a symptom. When you have fever, you take your temperature, report it, then put the thermometer away. No need to check it every few minutes. Following advice from professionals, I taught my son to report the psychotic symptoms…and then go on about his business the best he could. Not to focus on exactly what the voices were saying (although, like you, I found it fascinating yet terrifying to hear what was going on in my son’s mind). Report it…and then go on.

2) It is not possible that your son is out of medication possibilities. There are literally thousands of combinations – various meds, various dosages, etc. People with these symptoms rarely stabilize on a single med; mixtures are far more successful. At one point my son was on 6 psych meds plus 2 blood pressure mes. That many is unusual, but combos off 2, 3, 4, or even 5 psych meds are not unusual. So if your doctor says you have run out of options, what is really happening is that this particular doctor has run out of options and it is time for you to find a  doctor who has more experience with complicated cases.

One day at a  time. This is a marathon, not a sprint. I really feel for you in trying to deal with 3 boys with challenges. I have 2 sons. My second son does not have ASD, but does have some less severe issues. But juggling more than 1…that is incredibly hard.

Autismdog4twins

Lost_and_Tired Prayers said for you and your family. Stay strong. Xo

redthread16

Sending prayers for all of you.

Lost and Tired

@Kimberly Morales @Sarah Champion @Diane Sylvester Ianni @Celeste Johnson Christal Roberts   @Christal Roberts @Angela Martinez Vallejo @Marva Wetherington @Shelley Blundell

Thanks so much everyone.  🙂

Mbrown09Brown

hope Gavin has a great day   you are an amazing human being  my prayers are with you all

Heather

My heart breaks for y’all. We are just now seeing a bit of this ourselves and it just sucks. 🙁

Wvaspie4christ

AspieWriter Lost_and_Tired Oh no!!

Marc Tomor

Watching the “voices”become more of Marc jrs life also….Just tears you up thinking about it…..and it’s getting worse……

Tracey Green

Thinking of you all x

Carolyn Delas- Pasquarella

Sending prayers, it’s hard my uncle has that as does my mom. It’s not easy but love helps you thru it.

Shelley Blundell

sending prayers and hugs xxx

Cm Rogers

Prayers for a all of you.

Christal Roberts

I posted on your blog but just want to reiterate that YOU ARE NOT ALONE!!

Christal Roberts

my heart breaks for you and I have no idea what you’ve gone through even though my son has had hallucinations from meds and been hospitalized when he had a bad reaction to Prozac but that does not even compare to what you’ve gone through or are going through now just know that as a fan i’m here for you and stand behind any decision you have to make to protect/help Gavin. I do know how critical people can be when you have to hospitalize or rehome your child because my family sees it as a sign that I’m giving up on my son when i’m just trying to do what’s best for him thankfully he’s better now and almost drug free hyper as hell but happy I hope Gavin can find this same peace as well as you that me and my son have found it’s been a long road almost 7 years but i’m so glad it’s finally here

BeckyRogersWiren

((HUGS)) God bless you, will think and pray for you.

Tammy L James Bence

sending prayers for Gavin and hugs for all of you there

Celeste Johnson

So sorry Rob. I know that road very well. My guy has bipolar with psychotic features (visual and auditory). They thought he was schizophrenic early on and ruled it out as he was only 7 :-(. Lots of prayers and hugs.

Marva Wetherington

Praying

Sarah Champion

I know that ‘pit in the stomach’ feeling when things just start to take a bad turn. All you can do is hang on. That’s all you an do. There’s a lot of people thinking of you

Diane Sylvester Ianni

Prayers

Angela Martinez Vallejo

Prayers for strength for Gavin to pull through and strength for you and Lizzy to guide him!

Kimberly Morales

You are all in my prayers.

Laura Oliver

🙁

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