Okay, okay, so the boys are excited about today being the big Egg Hunt day. Me? Well, I do like egg salad, so it's alright. I just like seeing the excitement on their faces really. They KNOW there's no Easter bunny, and as we are not religious, there are no church connections whatsoever.....so for them, it's like Halloween, minus the scary things and it's Spring. Sounds cool from a kids perspective. 

I've been having a lot of reactions to the new drug they put me on: Saphris, so I've decided after much thought, and talking it over with my observant outsider husband; that I shall taper off, then meet with doc. It's been since he upped the dosage, so I'll take it back to the half tablet, confirm with him, fight with him if I have to, but get off this med. I hate it......and if I hate it, then it's not working. 

It's too "new" of a drug for the docs to know everything about it, which is another huge concern. But the side affects are of a bigger worry for me right now. Nope, don't like 'em, and you can't make me. (Gee, is that a little or myself talking? I don't know.....but I do know I'm stubborn. And the mind blowing, eye popping headaches aren't cool!) 


Aramis, sadly is worsening. Yes, he can sleep, and yes he is much more articulate. Yeah for that. But he sees spots all day, creatures and has delusions. Further, he now believes his brother is going to try to kill him, which causes countless battles throughout the day, as it appears brother "is going to do it". On the other hand, the voices tell him to kill himself, and he must obey. He just can't figure it out, so with all honesty he has asked me for help. He knows what they mean for him to do: to die, to cease to exist, to be gone forever. Since I didn't provide an answer but instead talked to him about schizophrenia.....he went to Dad. Maybe Dad can help him figure out how to kill himself? But stop Dante in the meantime. And did Dad know that they still talk to him all day? He can't take it anymore. Ahhhh, poor, poor sweatheart. 


Yes, we're bumping his appointment up to this week, and getting the pdoc to change medications as soon as possible, otherwise, we're looking at intake to a psych ward. A little older? And he'll have it figured out how to kill himself. Right now, we have all the obvious things hidden, knives, meds, etc. He just can't figure it out......but he will.

And a Good Morning to you!!!! ;(


This condition really takes its toll, mostly on the person who suffers from it. 

For a parent with DID, these are trigger words, and not what one needs nor ever wants to hear from their child. Especially a beautiful 8 year old. At least I'm not triggered, but as usual: the house is very clean. It seems the more I feel like I can't fix something, the cleaner the house gets. I can do that at least. In some strange way it helps.....my psyche feels that at least something has been accomplished.

The other negative component for DID, is that this darling child is telling me things, that I then tell husband and psychiatrist. They sound out of this world, but I grew up with schizophrenia, so it's time to fight flashbacks. Then, I wonder: did my baby just say this, or am I having a flashback? He couldn't possibly be doing and hearing the same things as "they" did. Will the doctor believe me? Since, you can ask Aramis 15 minutes later and the story is different. Now it's creatures, or bunny rabbits or spots that he sees, but they don't talk to him. Wait another 15 minutes, and it's back to "how do I kill myself Momma? If I could do it, then the voices will be quiet, and I can make the schizophrenia go away." But you'll be gone baby...."that's okay, I don't like how I feel anyway....and they won't be quiet". 


Okaaaay.......Well the good news is that Aramis loves, LOVES to go out with Dad on a walk. So, he told Dad what he's been telling me......ahhhh. The relief, as I'm not the sole "secret keeper" again. This time someone else, who is unconnected to a degree from schizophrenia, is hearing the same dialog. It was 'nice' in a twisted way to see how another parent reacts. 


Yes, it's shocking, heart breaking and downright scary to realize that if you don't intercede, your child will succeed someday. And this isn't the success we had in mind! 

At least I'm not "crazy", and I heard correctly. The psychiatric nurse said she noticed I take concise notes on Aramis' dialog....and she knows why. Of course I do....two days later, I can truly wonder if what I heard was correct! Add to that, Dante is arguing more than ever. I have a chart to document just how many arguments vs agreeable acts go on throughout the day, as the psychiatrist likes documents and I can give an answer based on facts; not my feelings at the moment. He averages 50% of each, which means for each argument, there's one equally agreeable act. 


Geeze louise....but I also know from dialog with him, as he takes after me and will talk openly, is that he is grieving because he realizes he has lost his brother. His brother.....is really gone for all intents and purposes, and he now lives with schizophrenia. Aramis wants everyone to know that it's "always been happening". Yeah, we know baby.....we know.  So, Dante is going through his own stages of acceptance, and has definitely not come to the acceptance part of things yet. Still, even when he does, the reality is that in many ways he has lost his brother. Their lives have been dramatically changed, and yes, schizophrenia moved in like phlegm with a cold, yet there's no way to cough it out. 


On a more positive note: check out my facebook page, as I don't have the link here.....but May is mental health awareness month, and you can easily attach a green ribbon to your profile picture via the link. Let's spread the support out there! Just find me on facebook, scroll down, I put the link up to the website that will help (easy as pie) you attach the ribbon to your profile pic. 


I found out from husband yesterday that he still hasn't told his parents about Aramis' condition. Ah geee......why? He said he didn't want to worry them, what terrible news to share, etc. Well, of course, but still: they need to know. It's their grandbaby, and he needs their support as well. He says he'll do so this weekend. I can tell this is one dialog that will be very difficult for him. How does one tell the grandparents that their grandson has a diagnosis that is not ideal? IS there an ideal diagnosis? Well, there's certainly much more pleasant ones. 


Shoot, if we could pick, I'm sure we'd go thru the DSM and find a better one for each of us. The strange/tragic thing with DID is that it's not a disease of any sort, but instead came about due to trauma. Now that: the trauma related part is what each of us would gladly trade in. The DID get's pretty easy to navigate, but it's the trauma that causes the problems. It's kinda like buying a car, you have to read the fine print: "This condition is not so bad, and you can learn to live a relatively functioning life with it....but (in even smaller print) you will have flashbacks, trauma related physical ailments, severe PTSD, and dissassociation." Sign me up!!! Oh, I already did... (no pun intended). 


I recieved an email from a delightful lady yesterday who has a meet up chapter for DID in Portland, OR. She also referred me to another meet up coordinator in Orlando, FL who actually has arranged events for DID'ers to meet for conferences and such. What a small world we have now, the internet has certainly changed things. So, for you who are in Portland: good news!!! You do have a group nearby of fellow DID'ers, and all their counterparts. Spread the word........and stop the hiding, or at least reach out and find someone who see's the world the same way you do. 

What a great letter she sent, and such a positive spirit this lady has. Just check out "Meet Up.com" and look under the category: DID. Then you can narrow it down to your area......there are people all over with DID who are looking to form organized groups to meet face to face for encouragement, education and support. 



Well, that's about it from my corner of TX........We had family movie night last night (Hop of course!!!), and the boys are slowly waking up. I need to send Dad to the store (uggh! he doesn't know it yet, poor soul) to pick up a few Easter things that were forgotten. 


Have a lovely day today....and realize: it's Spring. Beyond any other familial beliefs, or connotations, it's simply SPRING. 

And all the birds at my feeder are singing its praises!!!


Shelly
 


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    Shelly Dowen-Johnson

    I am currently traveling with my husband across the United States, due to the nature of the work he does. 

    I am the mother of two boys, one who has recently been diagnosed with Early Onset Childhood Schizophrenia (Schizoaffective Disorder). 

    It appears the Dowen family gene sequencing contributes much more than the darling dimples both boys have inherited!  But, as always, with love, tender care and support....we will thrive! 

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