We have arrived home and I’m waiting for Elliott and Emmett to return. I was going to do a quick video blog but I just don’t have the energy.
We went over everything with two different doctors, one being in charge of the entire clinic.
I’ve mentioned before that we are suspecting reactive attachment disorder. That is what they believe is the case, rather part of the case.
They said that because of the extreme trauma and abuse that Gavin endured at hands of his biological father and paternal grandmother/family at such an early age, he never developed the neurological connections needed for things like a conscience (spelling?), emotional connections etc.
He gave us this analogy. “If you took a baby that was just born and covered one eye with a patch and left it on for two weeks, the child would never be able to see out of that eye.”
The reason for this is that because the eye was never used, it never developed the neurological connections needed for it to ever work.
That’s essentially what they are saying is responsible for at least part of Gavin’s psychological issues.
They told us that we are at the absolute end of the road as far medications are concerned. If these ever stop working, there is nothing left to try.
The other problem is that there are literally too many problems.
How’s that for friggin irony?
He told us that true pediatric bipolar disorder is so incredibly rare that they have only ever seen 3 or 4 in the Cleveland Clinic. He said it’s so rare that it’s most likely going to be removed as a diagnosis for children all together.
He said that in most cases kids outgrow the symptoms in their late teens or early adulthood. He said that you don’t outgrow bipolar disorder, so that means that most of the cases are something else altogether.
He said the same thing for the schizoaffective disorder as well. They know that it exists but it to is beyond exceedingly rare…………………………………………………………………….………………..
I’m having a really rough time writing get this. My hands are shaking and I’m sick to my stomach. For that reason alone, I’m just going to cut to the chase.
Basically, the only thing left to do is long term residential care. He explained that the reality is that it’s Gavin’s only chance. There’s no fix for what is wrong with him. The only thing we can do is a very, very intensive, in patient treatment….thing. God I can’t even think anymore. 🙁
Look, I’m sorry, but I’m going to go for now. I just can’t do this. My heart has completely broken and I’m so angry at Gavin’s biological father and paternal grandmother. This is their fault and I hate them more than words can say. For the record, I’m not going to do anything stupid. They’re simply not worth it. That doesn’t mean that I can’t fucking hate them though.
The boys are in bed and Lizze isn’t around at the moment so holding back the tears has become something I can no longer do.
Happy 34 birthday to me.. 🙁
I’ll get back to you later. Thank you for your support. I love you all.
Oh Rob–I just read your posting about the news on Gavin (now Aug 27th) and my heart breaks for you all–individually and jointly as a family. We had to place my (then) 17-y-o daughter in residential treatment as her behaviors and abuse of family members and pets had exceeded my ability to cope with any longer. Her psychiatrist recommended that she be placed before turning 18, as it would be impossible to get her into a residential program after that, so I had to do a parental placement instead of waiting for the "system" to work its way around to getting her placed. She is in a facility that has professional parents + additional staff to supervise "home" activities in the cottage and mental health supports workers who work with her daily after school is over for the day. She has multiple therapists (depending on the therapy being provided) and a psychologist, a psycho-metrician, and a psychologist. They are working on teaching her the things that I as a mom failed at imparting to her. It is a hard place to be but it is where I am. I have nothing but respect and empathy for you and your family. {{{{{{{{{{{{{Rob}}}}}}}}}}}}
Sorry to read that things have reached such a conclusion. *manly hug*
*hugs*
@dudgeoh thanks 🙂
Thank you @OnyxPanthyr @DoctorAnkenman @DLaubacher @CassandraS @Dearest_Nikky @Brianne Lynn @autiesmama @Jodi p @JenniferWhynott @JennyPattonFury @RebeccaMacDonald @KatMoody @KathyKohlBuehler @Kibblet @Mary Franzen Costello @MeganCKitchen @MicheleChaney @PurpleLogicRules @rmagliozzi @elizabethlendrum202 for all your support. I wanted to make sure you all knew how grateful I am for you comments, concern and other kind words. I really truly appreciate all that you do and count you all among my friends. Thanks again 🙂
@DoctorAnkenman Gavin was correctly diagnosed. It's been verified by the Cleveland Clinic, Akron Children's Hospital as well as several private doctors. Aggression was not the reason Gavin is being treated for that.
I do agree that many kids are improperly diagnosed. The Cleveland Clinic said that as well:-)
I wish I knew what to say, but I don't. I guess all I can offer is that at least you know now what you need to do instead of having that big question mark over you all the time. As heartbreaking as it is, it will also give you guys the chance to focus on the Es and help them to grow with less disruption. I wish you all the best. Know you guys have my support and prayers.
I cannot ascertain from a blog how relevant IASO is to Gavin. However, since many following his saga have experienced (or are currently) aggressive behaviors I want to ensure the public knows there was a false epidemic of bipolar. Bottom line, many kids were diagnosed as such simply from violent tantrums and put on psychotropic drugs when they should not have been. That scenario of course usually leads to more problems. Many of those kids were experiencing IASO and could be more safely helped with IASO treatment. If you know someone dealing with severe behaviors, please read this to see if it applies to them. http://www.HopefortheViolentlyAggressiveChild.com
This is it though, this is his chance! Expert help round the clock — I've seen kids THRIVE when they get the intensive treatment they need. Look at it that way, as much as everyone will miss him and he will miss you, if anything is going to help, this will! I've always said that if someone said sending Ted to the other side of the world would help him and I wasn't allowed to contact him but it would mean he would improve, I would do it. I would be heartbroken, but I would do it. So much of what is up with our kids we feel powerless. Now you have a bit more power, a bit more control, a bit more help than you did before. Try to look at it that way. Hey, my dad went away Memorial Day weekend, we thought forever (a whole list of horrible psych things EXPLODED, violently. VIOLENTLY) and he's actually probably going home in a month or so! When he was gone they figured out what was up and the intensive care (first hospital, then long term care facility) sorted it out! So lets hope that this works for you guys…
You are doing everything you can and I while I know that doesn't help you feel better about any of it, just know I greatly respect and admire your tenacity and continued attempts in helping Gavin (and all your family). We have a young man on our street, abused as a toddler/child and we have his mother to thank for this who was the abuser and the father who was never there and the young man, now a young adult who never got the kind of intervention he needed. I know it's exhausting …you and Lizzie are meant to be the parents, the advocates of those children; you will have peace knowing you did all you could. God bless your every effort.
Rob,
I have only been following your blog for a short time (maybe 2 months?), but in those 2 months, I have seen a true warrior for his children in action. This must be so horrible for your family, I can't even fathom. My prayers are with all of you, and especially Gavin. You have to believe that you have been and are doing absolutely everything you can for him- because you are, and frankly, there is just no other way you are going to get through this emotionally. If ever you need to vent, I am here.
OH Rob, I am so sorry for all of this information you received today. I cannot imagine what your family is going through at this time. Know that we are here for you in love and support. Please remember that this does not mean you are not giving up on Gavin. The hope for all of this is that someday he will see these choices you are making as being made out of nothing but love for him. I know that you have done everything in your power to love and care for Gavin and you will continue to do so. Now the power must change hands and maybe just maybe with intensive therapy there will be a breakthrough. We can all pray for this to happen and I will do so.
I like to reply to each comment but tonight I'm too tired and there are too many. 🙂
I just want to say thank you for all the love and support. I really truly appreciate it. This is a very difficult time for my family and the future is very uncertain.
Somehow, we will find the strength to move forward and do what needs to be done.
Thank you all again. 🙂
My heart breaks for you guys. For so long you have been looking for answers and the answers you have been given are just so extremely difficult for you to have to make the choices with what you've been presented. We all just want to fix things. My heart breaks because it seems as if they doctors say that there is no fix 🙁
I don't think I can add to anything that hasn't already been said but I will pray for you and your family. Regardless of what happens, you will find something that will work for you and your family.
It sucks when you want an answer so badly then you get it and it's what you deep inside kinda thought but tried not to let yourself believe in hopes it would not be true. But then you find out what you hoped had a fix or cure or a majical pill just is not so.
So much to deal with
I hope you can find a placement. As hard as it is to do. It would be a good thing given the fact that curing this is not in the foreseeable future. And puting him in residential placement does not give up on him it just says we can't give him the help he needs and Emmett and Elliot need this as well for their health and well being.
You can see him. For the good times. Not the bad.
I hope you can find a place for him. That can deal with medical issues.
I am so sorry for your pain, heartache and fears. Please watch that video I suggested as that is exactly what it is about. Actually it could be far worse as you will learn from the video and other stories to yet be told.
Sorry this is the Birthday gift you get, but an answer is an answer that you have been waiting for a very very long time. Better to know the what it is than still be in the dark. Remember all those other visits to DR that ended in more questions than answers? So this was a change.
Yes his biological ancestors are totally at fault for this and I would plan revenges to make myself feel better, but never carry em out. Like enrolling them for junk mail relating to child abuse causes. I have a twisted way of revenging not carried out.
Wow Rob, there just aren't enough words to adequately express how sorry I am that you guys are having to deal with this. And on your birthday, no less. I'm so sorry, and just wish there was something else I could say.
I do have another contact who has worked in advocacy regarding RAD I would be willing to hook you up with through Facebook if you want. Just message me to let me know when/if you want.
Know that you, Lizze, and all three boys will remain in my thoughts and prayers. I so wish the news was different. And I wish hell could come more quickly to those who abuse children so heinously. :*(
So very sorry, Rob. You know how you grieve the loss of your typical child when they get their autism diagnosis? You are grieving again, and rightly so. It is a loss, an end,(of sorts) and *so* not what you put in for. Perhaps you feel like the Gavin you tried so hard to see, tried so hard to find, was the reflection of your own efforts and desperation? Perhaps he never existed at all? That would be a logical reaction, and probably the one I would have, but I guess the best you can hold, for now, really *are* those times when he *was* that child. Remember them. RAD can't erase them–you earned built them, so hold them close. Sounds like bullshit? Maybe–I genuinely don't know, I won't kid you. But I do know that sometimes the bullshit is all that keeps us on just that side of sanity. And the rest of your family needs you on that side.
I do think that what Kathy said below about the RAD child and sadness is something else to hold onto. This sounds horrible in my head, but I will type it anyway…at least this is your grief and not his. He is probably going to (this still feels icky, but sorry) not only indifferent, but even okay with any sort of outcome. So perhaps that is a kindness to this child you've tried so hard to father and fix? A very odd, hard kindness, but still…your son won't be sad. That's something. Not much, but we're not playing "Candyland" here, so we take what we can get.
Late in my mother's dementia, my barely older brother, whom she absolutely adored, was diagnosed with pancreatic cancer. He suffered horribly, was in great pain, and was gone in three months. My God, if my mother had any awareness of any of that, it surely would have killed her. I know because it very nearly killed me. But she was spared. She never even knew her son was ill, much less that he had died. And again, my mother's dementia is not the same as Gavin's RAD, and a mother is different from a child, I don't mean to imply otherwise, but neither my mother, nor Gavin had/have to bear the burden of their illnesses. It's killing you, surely–but your loved one is "spared." Ugh. I hate that I wrote that, but I hope you understand that I mean it respectfully and in earnest.
Gavin, I suppose, was Gavin already when he came to you. I am sorry for that, but you must remember all that you did, how you worked, who you sought, and how you hoped. First, because hope is never as foolish as it seems in these situations–it is what sustains us, and second, because your other sons will always know the kind of man they have for a father, and knowing that will give them hope. That's a big damned deal.
I hate that this is your lot. I am sorry. I hope that I haven't offended you because it was not my intent–I only want you to know that there is something ahead of you, ahead of this. You will always get through because there are no other options. This is blessing and curse, I know, but it's all I've got. I am sorry. Regards, leslie
I dont even know what to say… prayers to you and your family and hugs!
Rob, I am so sorry. I can't imagine what you are feeling right now. Your whole family and especially Gavin are in our prayers. Don't ever give up, even when psychiatry does.
I can't pubically voice my opinion on this. Love you both.
Hi Rob, I haven't been online much lately and missed a bunch of posts..just wanted to let you know that I'm so, so sorry to hear this and hope that there's a silver lining somewhere. I hope that they are able to treat Gavin successfully and that the rest of the family remains strong. It is so unfair that a child should have to suffer like that because of such vile people; at least you being in his life has given him a real father who loves him. Sending Light to all of you.
This had to be absoLutely devastating. Your anger is so understandable. My eyes burn for the pain you all must feel. Poor Gavin. Ugh, not a happy birthday, but birthday greetings regardless.
Unfortunately, I completely understand where you are coming from. On August 9th we admitted our 8 year old (will be 9 on the 30th) daughter to a psychiatric residential treatment facility. We just could not keep her or anyone else in the house safe! Praying for your entire family!
I'm so sorry to hear this was your birthday present. I've seen this so many times… I hate it for each and every parent whose ever had to face the decision to give in to long term placement. We were so scared when our son went into his last hospital stay that they were going to say that we'd never be able to bring him home – for many of the same reasons you've described with Gavin. You and the Lost and Tired clan are always in my thoughts and prayers. I hope that this course of action gives Gavin what he needs – and you and Lizzie some much needed respite. My heart goes out to you all.
So, so sorry and furious at his early treatment. That's a story I've heard too, too many times. Sorry too that this is a pretty crummy birthday present for you. It will not be an easy road, but with RAD, you don't really have to feel that he is sad about what's going on, because the kids just don't work like that. He will still be your boy if and when he finds himself in a residential setting, and you will still be in his life, maybe just not 24/7. The little dudes, however, don't have RAD, and they will benefit from peace and harmony if you can find help for Gavin. Did the docs offer anything like that?? Peace and prayers for you.
My friend. I feel for you. Marc was diagnosed with Reactive Attachment Disorder a few years ago. It is a long road ahead of you, and I wish that I could say it would be an easy road to travel.What we have learned. If it works today, it might work tomorrow, but it probably won't work the day after. Marc is parroting emotions. He will display emotions, but they are learned rather than natural.
Keep talking. There will be times you feel like you are going crazy, and times when you wish that you had a full head of hair to pull out. Keep talking. While his behaviors will seem odd, outlandish and everything in between, for a kid with reactive attachment disorder, they are perfectly normal.Thinking of you. Remember, no matter how much you want to throttle a certain someone, it won't make Gavin any better.Oh, and Happy Birthday, I know that the news you received isn't what anyone wants, but it sure does explain a few things doesn't it?
@Carlyoung we are walking the same journey my friend. It's like we have finally come full circle. We left all the abuse and mind games, moving on together as a family. Now we are back to that and having to send him away.
I don't understand how someone can treat their own flesh and blood in the manner in which they did. Part of me wants to hold them accountable and the rest of me just wants to stay focused on Gavin.. ;(
@lostandtired Holding them accountable wouldn't do anything except allow them to play "victim" once again. The ONLY fitting punishment in my eyes from here is that they BOTH should be forced to experiance lacking the attachments that Gavin is (because although he doesn't realize they are lacking it's got to be very confusing to be him and not understand it all on top of everything else he has going on) and also they should feel the torment you and Lizze feel every single day untill they expire from the pain. The likely hood that will ever happen is slim to never gonna happen so our only choice left is to focus on Gavin and do what you can and pray that it's enough. <3 to you both.