How do you discipline a chronically ill child?

Folks,  I really could use your advice. We are finding ourselves in a dilemma with regards to Gavin.

Gavin has always been difficult to discipline. He has so many challenges in his young Life,  both health wise and mental health wise. In many areas, Gavin is only about 3 or 4 years old,  developmentally. Trying to discern what is a willful act as apposed to something completely outside of his control,  is becoming more and more difficult.

I want to be very careful that we hold him accountable for his less than good choices and at the same time be understanding of the things that he has no control of.

The problem we have is knowing what is what. I’ll give you an example.

How do we know when Gavin can’t actually remember something we told him? We can’t.  The truth is that Gavin’s memory is slipping away,  so it’s very possible that he doesn’t remember things. However, there are also times where he says he doesn’t remember and I know that he does.

We had a situation this morning where I sent Gavin to his room.  Before he went upstairs, he stopped to do something he wanted to do, instead of what I told him to do. Then he told me to wait. Which in and of itself wasn’t a big deal.  However, when I asked him what he said,  he says that he never said anything. Lizze and I both heard him say it,  however,  he insists that we were wrong.

Does he really not remember or his is playing us?

While this wasn’t a very big deal,  it’s just one example of something that is happening all the time.

Basically,  when it comes to knowing what to do,  we either have to guess or assume. Neither of those are pleasant options but we don’t have anything else to go on.

The other part to this is maybe not the most rational but it plays a big role in how I respond to these situations.  Gavin is chronically ill.  No one knows how bad things are going to get or the long term prognosis. From what we have seen so far,  my gut tells me that the prognosis isn’t good. I realize that’s not very optimistic but I deal with reality and that is the likely scenario.

If we have limited time to spend with Gavin,  I don’t want to spend it in a way that I will regret for the rest of my life. Does that make sense?

I mean,  which way is the injustice to him?  Addressing, the problem behavior or letting it slide? We will always ensure the safety of our boys, so if Gavin is being dangerous, than I will quash that immediately. Having said that,  I don’t know if we should step back or just more carefully pick our battles.

How do discipline a chronically ill child? How do you know what is within their control when even the experts can’t tell you. 

I absolutely hate being in this position. It friggin sucks.  🙁

< em>**Thanks for reading**

       -Lost and Tired

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Michelle O

As a professional that works with children with disabilities and a mother of a special needs child, I cannot stress the importance of treating your special needs child like a typical child. It has been the key to success for me at home and at work.

I see so many children capable of so much more but their label has allowed people to adapt discipline methods and typically avoid discipline all together. The truth is you don’t know what they know and don’t know so why not just assume they know all and are aware of what they do so they can learn the typical way to manage behaviors?

This is especially true for so many that are non-verbal. Typically when a child doesn’t have a skill, they are wired to over-excel at other skills such as comprehension. So while they cannot talk, most likely they understand every single thing you say, even if they do not display comprehension skills the way a verbal child would.

I say it’s best to nix the label and deal with the behaviors as you would any other child. If peer modeling is a great concept, then so is typical discipline because you are modeling the typical outcome of a behavior that will most likely require the child to respond by teaching them to behave like a typical child, which is of course your ultimate goal.

Lost_and_Tired

That is very well said and exactly what our therapist said. My fear is that if we are losing Gavin, I don\’t want to spend what time we have left constantly correcting his behaviors. Does that make sense?

I know it\’s not rational but ever since we lost him to regression all those years ago, I have been filled with regret. I just don\’t want feel that way.

However, you\’re absolutely right and we do discipline him. I just wish I knew his motives for things or what is behind some of this behavior. I would feel a little better about disciplining him.

Thank you so much…..

@DoctorAnkenman

I concur with much of the above posts. Consistent boundaries and discipline are crucial to a child's development and social ability. In fact, a lack of these things can lead to the Immature Adrenaline Systems Overreactivity (IASO) condition I published this year–wherein they begin having severe meltdowns and even become violent.

Lost_and_Tired

Thank you very much for sharing that.

Suzanne

My son has autism and does go through regressions (multiple).we sought help regarding discipline as we weren't sure how to approach it given his varying abilities day to day. Two things that we were told stuck out, before anything else remember he is a child first, and meet him where he is functioning on that particular day/ time. Also visual cards demonstrating wrong and right behaviours may help and we use little saying hands are not for hitting/ gentle hands etc to aid memory.

Megan

Wow, this is a tough situation. This is MY own opinion here, please don't think I'm trying to tell you what to do! I think that regardless of how much time you have left with Gavin, there needs to be some sort of discipline. Maybe not as strict of a discipline as with your other boys, but some. What if he still understands more than you know and realizes he's being treated differently? However, I agree with Erik–whatever you decide, stay constant. Not only for him, but for your other boys too. He will learn certain actions will get consequences and certain ones won't. Your other boys will also learn certain actions that he does will or won't; they will also be confused when they try it and get a different reaction. Good luck Rob!

Lizzeann

Thank you, Megan! This has been my point regarding this situation all along. When he's older (18, 19 21+ years-old) if he does something wrong, simply saying "I forgot" or "I didn't know" isn't going to get him off the hook. They aren't going to look at him and say, "Oh, it's okay buddy. We all forget the law from time to time. Go on home." I'm not saying that we should be cruel when we discipline him or anything like that. Just that as his parents it is our responsibility to make sure to teach him that ALL actions/choices have reactions/consequences, even the un-pleasant ones. He doesn't need to remember the specifics of everything (i.e. this crime = X number of years in prison) but we need to find a way to instill in him what situations, actions, inactions etc. are WRONG.
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Erik

Lizzeann I think you are on the right track there- It is my firm belief that the first deciding foundations for right and wrong, for specific reactions in any child are laid immediately in the first years when the child starts to explore the world on it's own in it's contacts with parents, with brothers and sisters, with groupmembers. Even if for someone in the Spectrum this can happen for a large part on a very conscious level where he or she almost physically has to connect different dots with eachoter, this also for a large part happens on a subconscious level. And that's where constant reactions even in situations where the child says he or she does not remember to have done something, come in.
I reacted on your 'Dear God…' post over here at 'Lost–' …For lack of words- Be strong… if only for us.

Lynn

My son does the same. He is 15 with ASD and learning difficulties and if he thinks what he said/did is going to mean I'm going to challenge him, he will say he didn't say it/do it. He simply doesn't like to be wrong. Certain words are banned e.g. 'silly' as in 'stop being silly Jake' so we have to think of new 'Jake friendly' words that mean the same to ensure no meltdown. I really feel for you over the issue of Gavin's illness-I really don't know how I would react in the same situation, but I think Patty has sage advice x

Janine

My daughter (Kierra) is Autistic and she does the exact same thing. This morning is a prime example. I went to have a shower and my husband was in the living room. My daughter said a bad word and when my husband questioned her she said. I didn't say anything. This happened twice, then she got angry and stormed off to her room. I wonder if she is saying it out loud and doesn't realize she is saying it at all. Could that be a possibility with Gavin also?? This happens all the time with Kierra and it is very annoying.

Erik

From personal experience as a during his youth not as such acknowledged Aspie- Whatever you do: Stay Consequent. Do not at one time react like this, – and then at the other time react like that. If you feel that a certain action of your kid would grant firm action from you- stick to that, even if you doubt where it comes from or even if your kid is ill, because he will know that a certain reaction will always follow certein actions from him. He is a kid, Autistic and chronically ill and all. And as a kid he will search for his boundries. And if one thing is 'killing', is dangerous, is making unsure and unsafe, it is parents that at one time react like this and at another time react like that. Also react the same way with all your kids and eaven with your spouce- Autistic kids even more than neurotypicals see and recognize and become unsure if they see different things. Stay with what you decided is the proper way. Hold on to that- he'll benefit far more from that than when you go from side to side, because that'll make not only him, but also his brothers go mad with uncertainty.

Patty

There arn’t words enough to say how much that sucks. It’s hard to give advice, I’ve never been in your position, however I’ll tell you what I think, and you should feel free to ignore it if you think it’s crappy.

I don’t think you should treat him differently because of his health. In my mind, this could make him feel alienated, or intitled; also the less you expect him to remeber, the less he’ll remeber. The brain is more like a muscle than a computer, if it doesn’t get used it atrophies. I also believe that explaining why something is against the rules is important (ie You need to go to bed so you won’t be tired and cranky tomorrow). I hope that if you can’t exactly be optimistic, you can at least be hopeful. I keep your family in my prayers (I don’t know if you believe in prayer, but at very least, it’s the thought that counts). Lastly, I’d like to say there’s no way to be a perfect parent, there are 1000 ways to be a great parent.

Patty

There arn’t words enough to say how much that sucks. It’s hard to give advice, I’ve never been in your position, however I’ll tell you what I think, and you should feel free to ignore it if you think it’s crappy.

I don’t think you should treat him differently because of his health. In my mind, this could make him feel alienated, or intitled; also the less you expect him to remeber, the less he’ll remeber. The brain is more like a muscle than a computer, if it doesn’t get used it atrophies. I also believe that explaining why something is against the rules is important (ie You need to go to bed so you won’t be tired and cranky tomorrow). I hope that if you can’t exactly be optimistic, you can at least be hopeful. I keep your family in my prayers (I don’t know if you believe in prayer, but at very least, it’s the thought that counts). Lastly, I’d like to say there’s no way to be a perfect person, there are 1000 ways to be a great parent.

Chris

My goodness, that is a difficult situation. I really don't have advice for you except to say that I will be praying/thinking of you.

We often have similar problems with our youngest, who has autism. It's difficult to tell if she understands the discipline we try to give her or if she is truly unrealizing that we do not approve of certain behaviors. Part of me thinks that it's the attention she is after more than anything else and that we may need to ignore some of the behavior and not let it become a tool for gaining attention from mommy and daddy.

In any case, whatever you decide that's best is ultimately what needs to happen. You obviously have great care and compassion for Gavin (and this post is proof) so whatever you decide is the proper course of action will be done in the same light.

Blessings on your journey.
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