Confession of a special needs father: Guilt and a plethora of emotions

The boys are in rare form this morning. Lizze is miserable and I’ve lost a great deal of motivation. I have to make a phone call this morning that I never thought I would have to make

I have to call a residential treatment facility and make arrangements for Gavin to be admitted.

Just writing this makes me sick to my stomach.  The place he would be going is by Lake Erie,  north of the Cleveland Clinic.  I haven’t seen it on a map but I’m pretty sure I’m at least close.

They come highly recommended and we’ve checked them out before.



I don’t want to make this call.  I don’t want to have anything to do with this. No parent should ever have to do this to their child, it’s just not right. However,  those of us that have to make this heartbreaking decision, do so out of love, not anger. We do this because we want our child to have a future.

It’s difficult to find the words to describe what I’m feeling right now. If this all goes the way we expect it to,  we have no idea how long Gavin will be gone.

What do we tell Elliott and Emmett?

How do we not feel guilty when life in the Lost and Tired household improves because we aren’t dealing with Gavin‘s behaviors?

That’s something I would really like to know. Why does doing the right thing have to feel so horribly wrong? Why does it have to hurt so much? Is Gavin going to resent us or worse,  even hate us for doing this?  How can we explain to him what is going to happen?

Right now, I’m a plethora of emotions and I feel hope, despair, grief,  confusion and loss,  all at the same time.

Life needs to come with an instruction manual..

This was posted via WordPress for Android, courtesy of Samsung’s Galaxy S III. Please forgive any typos. I do know how to spell but auto-correct is working against me.

-Lost and Tired

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This was posted via WordPress for Android, courtesy of Samsung’s Galaxy S III. Please forgive any typos. I do know how to spell but auto-correct is working against me.

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About Rob Gorski

Father to 3 with Autism and husband to my best friend. Oh...and creator fo this blog. :-)

  


  • Rob, few posts really make me want to cry. This one does. I wish I had words of comfort. I can only say I think you redoing the right thing for everyone, including Gavin. You are giving him a chance. Prayers.

  • I agree that this decision gives all of you a chance for a better future. I have worked so hard for 19 years to make the world tolerable and not too scary for my son…and I still fail at times. It can be exhausting and takes a toll on everyone. I believe that Gavin will adjust and will probably settle in to a more comfortable and controlled environment which will make him feel more secure. Special needs parents already feel guilt most of the time…turn it around to all the positive outcomes that are possible!! Prayers and best of luck to all of you!

  • Marlene Barnett says:

    Rob- just keep pushing yourself forward. You are doing the right thing. Even though your insides are being twisted inside out. Hopefully in the future, Gavin will thank you for what you are doing for him. My son did thank us. He feels more secure where he lives now then when he was at home. It’s horrible to hear but it’s coming from the horses mouth itself.
    Now for Emmett & Elliot they need to know as much as they can handle. Tell them that sometimes when you love someone they can not live at home with the family. He needs doctors all the time to help him feel good. Don’t tell them that he’s coming home. Because he’s not coming home that soon. These things take time.
    When you are able to visit, go as a family.
    Good luck!
    Lizze is so lucky to have you. You sound like a great husband & father.

  • Chris says:

    I can't image the weight of it all. What you're doing, you are doing out of love from what I can see.

  • Rob, few posts really make me want to cry. This one does. I wish I had words of comfort. I can only say I think you redoing the right thing for everyone, including Gavin. You are giving him a chance. Prayers.

  • Kathy says:

    It is right, and very, very difficult. I know of no parent who has walked this road who has felt only relief. There is always the sadness and sense of failure, but you just have to believe that some things just need more intervention than any parent is able to provide. Look at everything else you have tried, much more than a lot of us, and now you are trying the residential route. You and Lizzie and the boys need this. Gavin definitely needs this. It will not seem so strange once a new rhythm is found. He will adjust, and may do well with a residential structure. The little boys will be free of worry that he will hurt them. You will still be mom and dad, and he will still be your kid. Believe that all will be well.

  • I agree that this decision gives all of you a chance for a better future. I have worked so hard for 19 years to make the world tolerable and not too scary for my son…and I still fail at times. It can be exhausting and takes a toll on everyone. I believe that Gavin will adjust and will probably settle in to a more comfortable and controlled environment which will make him feel more secure. Special needs parents already feel guilt most of the time…turn it around to all the positive outcomes that are possible!! Prayers and best of luck to all of you!

  • Elizabeth S says:

    My husband who went through some of this with our child (violent, destructive behavior) thinks removing them from their home – a familiar place where they are comfortable – is the worst thing you can do. I agree. I am the one that posted about the high doses of EPA fish oil that stopped my son's tantrums. Is there any way you can try that first? It is expensive, but it lessens the inflammation that causes the outbursts. I have also found evidence that fish oil really CURES the problem by helping to remove neurexin from nerve terminals. The nerves communicate better and they are not in agony anymore.

    This explains how presenilin acts as a proteolytic enzyme to remove neurexin: http://www.plosone.org/article/info%3Adoi%2F10.13

    This explains how fatty acids like fish oil increase presenilin levels: http://www.ncbi.nlm.nih.gov/pubmed/15375184

    My son also had the stabbing pains in hands and feet. There was one side in particular affected and sometimes he would grab his finger complaining of pain before one of these episodes. He also sometimes grabbed his leg before one. It is really "stroke-like" in nature, where there is probably oxygen deprivation (because of inflammation) and therefore decreased nerve communication. When I learned that my son probably had a lesion in the left side of his brain, I started researching how to heal it. Part of it was to give the fish oil, another was to increase arginine – which in turn increases growth factor. I am quite sure it is gone now.

    Please email me if you are interested to know more about what we did. I cannot share everything here.

    Liz

    • I appreciate what you’re trying to do, I really am. However, not every child has problems for the same reason. I’m thrilled that your son responded to something like that, however, Gavin is very different.

      He is much, much more complex than that. I’m aware of fish oil but Gavin has very deep rooted mental health issues behind what he is going through. Fish Oil has no impact on this. I will however, bring this up to the doctor when we speak to him. I’m open to anything that could possibly help. 🙂

      • Elizabeth S says:

        If you spent half the time researching that you spend complaining about Gavin's condition, you might learn that fish oil is VERY effective at helping a lot of your son's problems. I have a friend that reads your blog and she wanted me to give you some suggestions because your son has the same symptoms mine did and mine is now stable for 8 months from these problems. I am sorry you have been lied to repeatedly about your son being "very different" and "much, much more complex". The fact is, these children are all VERY MUCH the same and have the same underlying problems and respond to the same nutritional interventions. Best wishes for your son.

        • You are so misguided. Every child on the spectrum is profoundly dynamic. That means different. I suggest you research before spreading misinformation and giving parents false hope. Regardless of how your child reacted to fish oil, DOES NOT mean it is appropriate for every child, including my son. Your statements are quite ignorant and honestly sorta arrogant as well.

          Not only is it irresponsible to make statements like "The fact is, these children are all VERY MUCH the same and have the same underlying problems and respond to the same nutritional interventions" but it show a complete lack of understanding of the very basic nature of a SPECTRUM disorder. Every childs biochemistry is different and your fish oil remedy may have helped your son, but Gavin has very serious medical issues that affect every aspect of his life. Unfortunately for our family and many others out there in the REAL world, things like this, simply don't help.

          I have received advice from parents that give their autistic child weed because someone somewhere said it would help.

          I also take offense to you assuming anything about my son. Gavin baffles the most highly educated doctors in the entire country. We are working with several of the best hospitals and doctors in the county. If fish oil was the remedy, I believe that these specialist would have suggested it by now.

          I wish you the best of luck and continued success with your child. I'm truly happy that you have found something to help your child. Not all of us are so luck.

          I'm done with this.

  • autiesmama says:

    I'm sorry. I'm sure that every part of you is tied in really tight, hard knots right now, and I truly can't imagine your grief and guilt–this is saying quite a bit, because if there's parental guilt to be borne, well, I'm first in line :). I know there are many of us who say, "no parent should have to do ____________ ," and it's true. But we do it. You're doing it. Because you're a good parent to all of your sons. You're a good husband and a good man and it's confuses everyone when shit rains down on such people. And yet, it does.
    Remember the first time one of your kids got a diagnosis that scared the crap out of you? How your stomach dropped a thousand feet and you felt your whole life, your family, your future turn to dust? This is like that, except that now you know your stomach will come back where it belongs and that nothing will remain dust. So you know better and you do better. Better is not easier. I hate that, but it's true, God knows it's true. Your younger sons are resilient and they mostly understand (albeit empathically) that you did what was best for everyone you love. That includes Gavin. Fairness is not everyone getting the same thing, it is everyone getting what they need. You're giving Gavin what he needs. That's a hard kindness and a great example for your younger sons, don't you think? And also, I still sort of wonder or think or hope that maybe Gavin is just a little relieved or comforted to be in a structured and safe environment. I know he's emotionally and cognitively delayed, along with his other conditions, but even very young children seek safety and structure, and they may not be able to name it, or explain it, or even express it, but they know sadness when they've hurt someone. I (do not know Gavin, no) sort of hope that Gavin is feeling even just a small bit of this. I said this before, but he might well be comforted by the structured and safe environment in which he is no longer hurting his family. It may be that a bit of a burden has been lifted from him, as well. Again, I don't know, but I hope. Think of it like this: My family loves camping. They insist that I go camping with them and participate in all that camping kind of stuff as best I can because they love me and want to me share what they love, even though it doesn't come naturally to me, and I'm a really surly and unpleasant camper every single damned time we go. It never goes well and the whole family comes home sort of bummed and guilty and mad and sorry for a whole bunch of reasons. Now, maybe a trip comes up and I can't go for whatever reason. Without saying it, the rest of the family is sort of better off because I'm not there, and also, I'm relieved that I'm not with them to ruin their trip. Maybe Gavin is that surly camper who is a little bit relieved to not ruin your camping trip. Does that make sense? I don't know, now that I'm re-reading it, sorry. But the thing is, I suspect that even Gavin grasps a small bit of what you're doing for him and that he is, in his own way, relieved. Again, this is only a hope based on my hatred of camping, but at least it is a hope. That's the best we can do, sometimes. Yes, the future is uncertain, but this is not your first time in that particular rodeo, right? We keep moving, we get through, and we move on. There's no other choice. Take this time to be in the moment with the rest of your family–you've been (necessarily) focused on Gavin for quite a while. It's okay for you to feel a little less burdened in his absence–you know he is safe and well-cared for–so rest yourself, your soul and your mind. Let your family do the same. It probably sounds absurd and wrong to say such things, and I'm no Zen Queen, but I hope that you can take this time as a bit of a respite. You'll be called up for duty soon enough, don't you think? Gavin is safe. Your wife and your younger sons are safe. You are safe. That's quite a big deal for you all. And not a terribly bad one, if you think about it.
    Please don't think me cold and unfeeling, or that I'm all about putting kids in residential settings, I don't know if I could do it, but that's because I think it is a very, very brave thing and I am often not very brave at all. I want you to see the bit of light that comes with this development–you deserve it, and you need it. Regards, Leslie
    My recent post The Momfia: This Time It’s Personal

  • CaseManagerD says:

    You need a family therapist that can help all of you process and get through this.

  • Magimom says:

    Rob, I've been there, done that and know just where you are. The guilt is unreal and the feeling of failure is immense. I will keep the entire Lost and Tired clan in my prayers as you journey this direction. Take care of you and yours and let the professionals handle Gavin's issues and hopefully things WILL level out for you all.