Autism, Aspergers, Rob Gorski,Special Needs Parenting, Reactive Attachment Disorder, Fibromyalgia,

Tag Archive: circumstances

Nov 07 2011

How could someone help YOUR special needs family?

This is a follow up to How you can help a special needs parentIt may to better to read the original prior to reading this one. 

 

I know that my special needs family struggles many times and in many areas. I think that there are many special needs families out there, that are struggling for various reasons as well. In some cases we may need similar types of support. However, what my family may need could be very different from what your family may need.

I have written about this before but it was mostly from my perspective. You can read that here, if your interested. I think it’s important that others share the kinds of things that would help to improve their particular family’s lives. Let me say this, I have realized over the years that the Lost and Tired family struggles can be intimidating to many people, including family and friends. I think that people would like to help us but have no idea where to begin. I have actually had this conversation with a few people. They don’t know how they could help but they want to. Some people have informed me that they are afraid of offending us by offering help.

The truth of the matter is that I wish I could do this on my own. However, the reality of the situation is that our circumstances are so extreme, that no matter how hard I try, I can’t do this alone.

When I wrote How you can help a special needs parent, I was trying to address this issue by sharing simple ways that people could help a family facing struggles, like mine is. The suggestions I made were pretty universal I think, but they centered around my personal experience. I can’t speak for everyone, so I try to use my situation as a sort of guide for others to follow. With that said, I think we should share some ideas of ways we could help a special needs family.

I was thinking that it may be helpful to alot of people if we could all offer up ways that either people have helped or could help your family.

This could give some insight to those that may want to lend a hand to a special needs parent or family but don’t know how or what to do. I’m very aware how uncomfortable it can be to ask for help or to accept the help that is being offered.

Personally I don’t want to be a charity case but I more often than not find myself in way over my head and in desperate need of help. I know that at least some of you out there feel the same way.

So I want to create a dialogue about this very topic and I would love to get as many opinions as possible. This could be useful for many reasons not the least of which, is helping people understand how to help a special needs parent or family.

How can someone help your special needs family?

Please leave a comment about how someone could help your special needs family. Maybe it’s something someone has already done. The more ideas or experiences we can share, the easier it could be for someone to reach out and help a special needs parent or family they know. I think this is pretty important and something that is almost never talked about. There is nothing wrong with needing help and asking for it as well.

Sometimes a well timed phone call can help out more then anything else.

Please share how someone has, in the past,  been able to help or what someone could do,  to provide your special needs family some relief.

Let’s create a dialogue or discussion about this and help spread some ideas around.

In my experience, the best kind of help, is the kind you don’t have to ask for. BY helping people better understand the unique needs of your family, help that is actually….um…helpful, can be offered more often than asked for.

Permanent link to this article: http://lostandtired.com/2011/11/07/how-could-someone-help-your-special-needs-family/

Sep 12 2011

Mimicked or inherent behavior

As many of you are aware of, Elliott was forced to start a new school this year, at the last minute. While I’m very upset over the circumstances of what happened, I truly believe Elliott is far better off where he is now. That said, the transition hasn’t been as smooth as we would have liked. While he’s not having major problems, he is struggling to adjust to the changes. I spoke with his teacher today (who is amazing by the way) about a few concerns I had.

She was actually Gavin’s teacher for the first few years he was at Summit Academy. We couldn’t have asked for a better teacher for Elliott. Mrs. C is very familiar with our family and much of the dynamic. It’s very interesting to hear her perspective on what’s going on with Elliott. She has been seeing many signs of ADHD (my family’s new 4 letter word) in Elliott. He’s having a hard time sitting still and walking safely ect…. Basically, he’s just very fidgety and had lots of energy.

She also noted that most of his behavior is identical to Gavin’s when he first started there. This coincides with what I have been seeing at home as well.  You may recall that I have written about the topic of mimicked behavior or modelingon many occasions. Basically, mimicking or modeling of behavior is when, for example, one child copies another child’s behavior. In our case, Elliott copies and models Gavin’s behaviors. This makes it very difficult to know what behavior comes naturally to Elliott and what is copied from Gavin. This has been an ongoing concern for many years now, especially as Gavin’s behaviors became more and more inappropriate.

Elliott Richard 5 years.

Like most younger brothers, Elliott thinks Gavin walks on water. In many ways, Gavin has more influence over Elliott than I do. It’s like a form of hero worship and it’s very difficult to counter that influence. I want to make very clear that Gavin is not a bad kid, by any stretch of the terms. The problem is that Gavin has quite a few challenges that often influence his behavior in a negative way. It’s not his fault but the impact is the same regardless.

I have noticed that Elliott’s obsessions are the same as Gavin’s obsessions.  Gavin has introduced Elliott to his imaginary worlds which in and of itself isn’t a bad thing. However, Gavin’s imaginary worlds are much different than most. Gavin suffers from schizoaffective disorder, in which he basically, sees and hears things that aren’t really there. This creates a situation where Gavin struggles with whats reality and what’s imaginary. Does that make sense?

When Gavin isn’t properly medicated, he will literally, fully interact with things that only he can see. This becomes a problem (aside from the obvious) because Gavin believes so completely these things are real and as a result, he tries to and is often very successful in convincing Elliott that they are real as well. As you can image this is very confusing for Elliott. On one hand Elliott doesn’t see what Gavin does but on the other hand, he believes everything that comes out of Gavin’s mouth.

I guess I kinda went off on a tangent, but the point is that it’s very difficult to tell the difference between mimicked or modeled behavior and behavior that his inherently Elliott’s.

Elliott has his quirks and it’s pretty obvious when those come into play but much of the other behavior is a mystery at this point. Even the ADHD-like behavior could simply be anxiety and nothing more. Elliott is quite prone to anxiety, very sensitive to stress and easily overwhelmed.

Even the professionals have a difficult time distinguishing the difference between these behaviors. I suppose time will tell. Luckily, we have a solid educational and support staff to help us sort this out. The current school of thought is that, as Elliott builds relationships with his new friends, Gavin will have less and less influence over his behaviors…

Hopefully, we will work through this is sort order and get Elliott back on track.

Permanent link to this article: http://lostandtired.com/2011/09/12/mimicked-or-inherent-behavior/

Jul 26 2011

Reality is beginning to set in

After a physically and emotionally draining day and a restless night reality is beginning to set in. Right now I feel kind of numb and disconnected. My head is swimming with thoughts and fears about this new direction our journey is taking us on. I don’t know where we are going now. I’ve lost all sense of direction.

For the longest time, we have been fighting the same exact fight, day in and day out. We never really won the battle but we always lived to fight another day. Some might call that in and of itself a victory. Perhaps under better circumstances I would as well. However, right now I’m just Lost and Tired. I’m completely overwhelmed by what I know lies in front of us and terrified of what has yet to appear.

 

Permanent link to this article: http://lostandtired.com/2011/07/26/reality-is-beginning-to-set-in/

Mar 13 2011

Father of the year? No sir, not me…..

I woke up this morning still not feeling well (that will be another post). I came down stairs and was sitting with Lizze and the kids watching a movie…

Gavin is already having issues as that is what woke me up this morning. All of the suddon Gavin stands up and goes to his room. He comes back down with a folded up picture. He launches into this very loud, very long winded “thing” about whether or not he should be able to keep the picture. It was a picture of Sonic he drew while in the psych unit at Akron last year. I told him that it was fine not to worry about it.

Thinking that was it, I went back to trying not to throw up. Gavin then starts all over again. I give him the same answer and go back to being sick. He continues to do this over and over and over again. By now I have taken to asking him, nicely, to please stop. I did this a total of about 6 times. It was like being tortured with words, if that’s possible. He just kept getting louder and louder and wouldn’t quit.

I’m sitting on the couch trying not to puke and at the same time filter him out and I finally snapped. I looked at him and told him to “shut up, just just up Gavin”. I just went off. I told him “I have asked you 6 times to stop and you won’t. We don’t care that you have the picture, I already told you that. I don’t understand what you want. I’m sick and just can’t take it anymore”.  At this point Gavin starts to cry (it’s fake and dramatic but still). I’m just shaking cause I literally feel like I coming apart at the seams.

I was as patient as I could have been under the circumstances but that doesn’t mean anything when I lose my cool. In reality I should never have aloud myself to snap, but dammit he just wouldn’t quit. It’s like he was doing it on purpose (which is a very really possibilty as that is pretty common) but it’s no excuse for me to tell him to shut up.

I walked away and went to lay down and settle my stomach. After I felt better I went and talked to Gavin and told him I was sorry and that I shouldn’t have said that. I also told him that he needs to start listening because HE IS NOT listening anymore. I gave him a hug and again told him I was sorry.

I will say that losing my temper like that almost never happens. However, that doesn’t matter as it should NEVER happen at all. This stress is getting to me. There is no break and no end in sight. I have the rest of my life to look forward to this at least until I stroke out or have a heart attack. I was on meds for the stress but they didn’t work and all my doctors and the kids doctors told me that my life is simply to stressful and meds will just take the edge off…maybe. They’re right cause they only took the edge off and that was only some of the time. The stress we experience is just so intense that very little works.

The only thing that ever helped was walking. As hard as I try and as much as I want to, I just can’t get away anymore. I desperately need to get back walking and running. I was able to center myself and come back stronger then before I left. It also got rid of my back pain for the first time in 11 years. Now the pain is back and it’s worse then before and I’m pushed so far beyond my limit that I just starting to crack.  Have to figure something out even if it means just getting a treadmill (perhaps after the van is finally fixed). I can run while at home and be there to help if something happens.

I know this doesn’t paint me in a good light and those that don’t like me will just have more reason not to like me now.  Just feel it’s important to be honest and show what happens to someone in my position. If nothing else I feel better just getting this off my chest…

-lost and tired

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Permanent link to this article: http://lostandtired.com/2011/03/13/father-of-the-year-no-sir-not-me/

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