The unpleasant truth

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  • Post last modified:October 8, 2012

My goal with this post to help the average person to gain insight into the inner workings of a special needs family in crisis. Please know that all of my readers have been amazing. This is more of a guideline post for our physical support group, ie family.

When you are special needs parent life can be extremely difficult. Life is also full of really difficult decisions as well.  

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We are facing one of those decisions right now with our oldest son,  Gavin. Gavin has what is known as reactive attachment disorder. This is a rare and very serious mental health disorder where a child hasn’t made the neurological connections necessary for making emotional connections.

This RAD causes Gavin to do very harmful things to his family and feel no remorse afterwards.

I will be the very first person to step up and say that this is difficult to understand and accept. However, this is very real and very serious.  The reality is, this isn’t something that can ever be fixed. We can’t go back in time to ensure those vital neurological connections are made. 

While we love Gavin unconditionally, this is not something that we can just love away.

The unpleasant truth is that Gavin is not your typical child.  He can’t be trusted and you can never, never let your guard down.  Any weakness,  even perceived,  can and will be exploited.

Such is the nature of a child with RAD.

Gavin thrives on the chaos that he creates within our family. I wish I could make people understand what it feels like to have your child,  the one you have loved and fought for, purposefully hurt the ones that love him the most.

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Heartbreaking doesn’t do it justice. I can assure you of that.

It’s hard enough for us, as his parents to accept this.  Trust me,  it’s easier for us to believe it’s all some big mistake. 

Unfortunately, that isn’t the case. There is no amount of love, positive thinking, denial, prayers or patience that will fix what is broken in Gavin.  I know that’s difficult for many of you to accept but it’s the truth.

Realizing that our 12 year old child can no longer live in the same house as the rest of the family, is very,  very painful.

It’s very difficult to parent Gavin but we have setup guidelines and rules that make it safer for all those involved. I’m very aware that these rules seems restrictive or unfair. However, they are there for a reason and must be taken seriously and followed.

At this point in the game, Gavin cannot be left alone with another child, especially his brothers.

Contact with other children needs to be limited as much as possible, not only for their safety but for Gavin’s as well.

Gavin has a very long history of being sexually inappropriate and we will not endanger another child.  That means Gavin cannot be left alone with or have physical contact with another child, especially one that is younger than he is.

This is our decision to make and it’s based on the advice of many professionals, much, much smarter than we are.

Sending Gavin to residential treatment is very painful but also a necessary evil. We are going to need every last ounce of love and support we can get to make it through this.

We can’t afford to rock the boat as we are literally struggling to stay afloat. I’m very serious about this. When you find yourself in a delicate situation such as this,  an unpleasant but necessary approach is needed.

This approach is one that is not unfamiliar to many special needs families. 

Basically,  you’re either with us or you’re against us.

I know this sounds dramatic but I assure you, it’s  necessary.  The reason for this is that our resources are extremely limited.  We can’t fight a battle in multiple fronts.  We can’t afford to spend time and energy convincing people that these rules and guidlines are all necessary and must be followed.

So we must take the approach, of stand with us or against us, Shit or get off the pot or stand up or step aside.

This basically means that the situation is such that we can’t afford any missteps or people constantly questioning every move we make or Gavin’s diagnosis.

We are struggling with this enough already and don’t need anyone making it more difficult for us,  regardless of their intentions. Not only does this rock the boat but it also sends mixed signals to Gavin, which we can’t allow to happen.

What we do need and welcome wholeheartedly, is consistent love and support.

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As Gavin’s parents, the decision to send Gavin to residential treatment is ours and ours alone. The amount of guilt we feel is immeasurable even though we know in our hearts this is the right thing to do.

Most people couldn’t even imagine what it’s like to live with a child that has RAD.

When it comes to interacting with a family going through something like this, please be a part of the solution and not part of the problem.

Rob Gorski

Full time, work from home single Dad to my 3 amazing boys. Oh...and creator fo this blog. :-)
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disillusioned

How do you tell who are the best parents and who are not?  How do you tell whether or not you are making the "proper" "guiltless" decision?  
 
Well, the really great best parents are the ones that wrestle and agonize over the decision, they are the ones who take the time to investigate all known outcomes and weigh the pros and cons.  They are the ones who summon the courage to make the decision they think might be best based on the information that is currently available to them.  They tend to be the ones still second guessing themselves and feeling guilty.  They are the ones that need to be told that they are great parents who are making the right decision, because what they have done is all humans are capable of, and that no one else could do better. 
 
I know you feel guilty, but please try to cut yourself more of a break.  It's obvious from your blog that you and Lizze spend a lot of time thinking about and wrestling with the decision to place Gavin in residential treatment.  It is beyond obvious that you don't take this lightly.  What you have to remember is that there are thousands of parents who wouldn't have thought twice about the decision to move Gavin to residential treatment. It is obvious that you wish he could get better and stay living home.  Parents never feel completely guilt free (at least I don't), but the reality is that everyone should be applauding your decision based on the time and effort you have put into making it.  Remember that for the rest of your lives, no matter whether the outcome of residential treatment is good or bad, anyone that criticizes your decision is doing so out of a complete lack of knowledge, and not because they know better than you.  
 
And Lizze, you have no more reason to feel guilty than Gavin does.  The world (or who ever you believe) has dealt Gavin a real horrible hand to live with, and I am sure that you would never want him to feel guilty because he is not neuro-typical, or because he can't do more or try harder.  I am equally sure that the real Gavin hidden underneath the illness would never want you to feel guilty for not being able to do more to manage keeping him in the house when you are not capable due to the limitations your illness and stress you were dealt.  (Please know that I am not implying you would be able to keep Gavin home if you were feeling better, because I don't believe that at all.  I just feel some connection to you because I spend countless hours laying in bed beating myself up for things that I imagine could be better if I were up.  I constantly have to remind myself of this advice.)
 
I'm sure that you and Lizze have all heard this before, but sometimes we need reminders, and sometimes we need daily and hourly reminders. I hope some of your readers gain strength from my definition of the best parent when it comes to making decisions.  It is a definition that I have lived by for the last few years and it helps me to feel strong, confident, and at peace with the decisions I make for my children.

rebeccamagliozzi

I certainly support your decision. I've been following your blog and its clear you've done all you can for Gavin. If I had a child with RAD I would do the same thing, most likely, that is, resident treatment.  The best thing you can do is get him the help he needs and protect your family. You cannot live in fear forever.

lostandtired

@rebeccamagliozzi thank you very much for your support. 🙂

LorcaDamon

Your expression of the need for others to be supportive is true of every parent, assuming that they (like you and your family) have done their research and worked hard at making sure their children are safe and loved. You have done your utmost, and anyone who wants to argue is welcome to step up and take your place for a length of time. If they're not willing to fill your shoes, then they know deep down that they are just being judgmental, not helpful.

lostandtired

@LorcaDamon I like that. 🙂

tikotik30354578

i read your blog every day, you have very beautiful boys, how much time did you notised sexual interest in your child, i have 4 year old son, whith mild spectrum

lostandtired

@tikotik30354578 I'm not sure I understand the question. What exactly are you wanting to know? I'm happy to help you, if I can.

tikotik30354578

@lostandtired  @tikotik30354578 can you tell me when your children draw people, do the draw their faces, my son draws very good, he draws faces and emotions, like anger, happynnes e.t.c. :))) i am sure your sons will be very very ok, and very happy,  at fiirst you have to believe in it, and it will be done :)))

GildaMSanchez

Even with all the restrictions Gavin has to endure–he will eventually realize how his own behavior has affected or will affect the rest of the family. Executive functions get tossed aside when he is having tantrums or meltdowns, so I know that Gavin is having a tough time internally. There are times at which the behaviors will occur involuntarily. Gavin has more verbal communication than my son, so I feel he will benefit from Cognitive Behavioral Therapy as well as Applied Behavioral Therapy. Gavin will have guilt and remorse just like all of us, so keep him on a positive mindset at every turn. As a parent of an autistic child, I feel so much hope for him to get better. Make sure the medication he is taking is compatible–polypharmacy can be complicated and messy…discuss this with his psychiatrist. Always have HOPE 🙂

lostandtired

@GildaMSanchez that was actually pretty deep. 🙂
The only part that I disagree with is the part about guilt and remorse. He is incapable of experiencing those things because he's not wired that way. There is nothing that can be done about that. Hopefully he can gain some skills though to help him better navigate his world.
Thanks again. 🙂

Silachan

I have to admit, I didn't fully understand what it was even remotely like with Gavin over there. But after I watched 'Child of rage' documentary, it really opened my eyes. Your story is similar to theirs, and I think that everyone who doesn't really believe that someone could do such a thing should watch that. Watch it alone, with no kids around you. It's definitely not for the faint of heart either. The things that come from that child's mouth are enough to scare anyone for a while. But that's the nature of RAD. Things you wouldn't think possible for a child to do are all very much so possible because they never learned to bond or care or feel empathy like that.
 
Good luck guys, I'm constantly thinking about you all. I hope for the best.

lostandtired

@Silachan thank you so much. That was really well said. 🙂

Lost_and_Tired

@whynotfathers thank you Carl. How are things for you and yours?

ZenLibra

Well…I don't know you personally, but through your blog I've come to know you and your amazing family. I have two on the spectrum and I know it's hard. I do not have to deal with as many of the problems as you do. I have one severely autistic, non-verbal son and one mildly-autistic daughter. I, myself, have RA which makes it difficult sometimes. I fully support your decision. It's not one that any family would want to make, but you've gotten all the information and you've done it with a sense of grace as well. Life is not fair. As much as we would all like it to be…it simply isn't. I wish nothing but the best for you and yours and I shall keep you in my thoughts.

lostandtired

@ZenLibra thank you very, very much for your words of support. 🙂

dotdash

From what I've read, you've got an amazing group of posters here, who almost uniformly leave loving and supportive messages for you and universally seem to have good intentions.  That said, it is pretty easy to cause inadvertent pain.  I certainly apologize if I have done that and I hope you will give other posters the benefit of the doubt.  You have played with great courage and decency the difficult hand you were dealt.  I do wish you all the best in the world, all of you.  Good luck.

lostandtired

You guys have all been amazing. Honestly, this isn't directed at any of you. This is more of a guideline for the people physically in our lives.
Please don't feel bad about anything. You are all amazing.

ChrisCrane

That's right ,you have come to the difficult choice to do what best for Gavin and the rest of family,I can not imagine the guilt you feel,but this is the only safe option for everyone involved ,Can you imagine the guilt if you just let Gavin be Gavin ,He would not get better but far far worse,and the destruction the boys and family would ensue. You have gotten as much advice from the Doctors as you could ,and everyone is on the same page as you and Lizze. My heart aches for her ,from one mom to her,I am holding her up in prayer and to give her peace that she is doing the best she can for all her kids. This is the other hard part ,the opinions and questions of others,I have learned the hard way ,some will have to fall away,you can't walk through hell,and explain to others why your walking through hell,If they can't accept,they have to go,I know from experience how hard it is,We as a family have lost parents,friends ,and others ,but others have come to take their place ,and they know and love and support us . This part of journey is so hard,but you will begin to know and have peace and trust  that you did know best,you love each of them ,you live with them,and you and Lizze  want the best for all of you. Prayers and thought go with ,Gloria

lostandtired

@ChrisCrane thank you very much. 🙂