Friday evenings, since the beginning of the school year, have been very difficult for Eli.
He's tired.
He's been super grouchy.
He's quick with the negative attitude, the whiny responses, and the sarcasm.
He's prone to meltdowns and over-reactions.
I get it. By the time Friday evening rolls around, I'm "done" with the week too!
I'm tired.
I'm cranky.
I'm not wanting any noise...I just want to have it be soft and relaxing.
I definitely and totally get it.
This morning, very aware that it was Friday again, I talked with Eli about a new approach I would like to take with him. I reminded him that the last month of Fridays have been ugly. I didn't want to have a repeat this evening, so how about we try something new?!
He looked at me, so I knew he was listening.
First I validated his emotions, saying I completely understood that he would be very tired from a long week, and from working so hard at school. I realized that it's a strain and that we all go through this feeling and that it makes perfect sense he would be feeling this way.
Then I asked if, this afternoon when Eli gets home from school, if he's feeling upset, angry, stressed, or just yucky in general, if he would be willing to just say it out loud to us, "I don't feel all that good right now!" as a reminder to help us know where he was right then. To help us meet him where he is.
I assured him that we would be understanding of his feelings, and help him in any way we could. I told him I realized he probably wouldn't be able to tell us EXACTLY what was upsetting him, or EXACTLY what he needed, but if he would just try to SAY it to us, it would help us to help be respectful of him. And if Eli was able to tell us what he needed us to do right then, for him, in order to help him, then definitely tell us!
Eli listened, and after I was done he was thoughtful for a moment. Then he said, "Okay" and that was the end of that conversation.
We shall see how things progress! I'm not expecting miracles right off the bat, but if we can start helping him learn how to express what he's going through and what his needs are, it will be a major blessing down the road and in the future!
About Me
- Mama Bee
- Ohio, United States
- My journey before and after bariatric surgery.
Showing posts with label communication struggles. Show all posts
Showing posts with label communication struggles. Show all posts
Friday, September 14, 2012
Wednesday, September 12, 2012
Delayed reactions
Last October, after we received Eli's diagnosis of PDD-NOS, things changed. Initially there was a lot of confusion and pain, but then as things began to make sense, to explain so much, it brought the brightness of hope, just like the sun breaks through the clouds on a stormy day.
Unfortunately, there's a darker side to living a life touched by autism also, not just for the person living with the diagnosis...but for the entire family.
Poor Eli. The strain of school has been getting to him. To the best of my knowledge, he's doing fairly well throughout the day...some minor outbursts, and near meltdown in math class yesterday, which was diverted by the quick thinking of his teacher... but I assume that he's keeping himself together overall. At least no one is communicating anything differently, so ... I go with the assumption of 'no news is good news' until I hear differently.
But when he gets home, hours after the fact, the strain of it all is apparent. Then he begins to have delayed reactions to the stress. Short-tempered, verbally harsh, sarcastic and flat out nasty, especially toward his brother. Lately he's been extremely bothered by "All the noise! There's so much noise!" I've read that "noise" can be physically painful to those on the autism spectrum. We're quick to eliminate all noise possible when he cries out. We've been working to give him the space and time he needs to decompress, to chill out. It's not always enough.
Some of us hide away in our computers trying to ride out the strain. Some of us get angry but sullen and quiet, trying to internalize the stress without further provoking the situation. Some of us throw up our hands and yell a little to relieve some of the pressure build up, but what does that solve really?! Not a thing. Some of us take turns doing a little bit of each.
Lately I myself have been blessed to experience some of the overwhelming emotions that Eli goes through. I say blessed, because as difficult as things have been for the last several months, it gives me a profound and deep understanding of what Eli is going through during his difficult times. And therefore, it gives me a glimpse in the window of how to approach him when my Eli disappears, and the neurological disorder takes over and steals my baby away from me right before my eyes.
The strain of Eli's increased mood-swings, his new tendency of not sleeping (which has increased to around once a week now), his fragile nature since the start of school, the new defiance and extreme nastiness that is presenting when he loses control of his emotions.....his new desire to run out of the house, and threatening to just keep on running, when he is upset.....these are all a part of it.
There's the fear of how I'm going to be a mom to a teenager who acts like this hovering in the background.
Then there's the sad awareness of all the wonderful people whom I have lost from of my life over the past few years. Some have died. Some have been ripped away. Some have moved away. Some have simply moved on. It happens. It's part of life.
It still hurts.
It still feels lonely and a little like abandonment, even if it wasn't meant to be.
Then I have started a new, wonderful job, splitting my time half between the job I've had for over 17 years, and the new one. I'm ready for a change, and I love it! But even positive change can be stressful, especially when you're trying to stuff your already-too-full brain with all kinds of new information, trying to remember everything, trying not to screw things up.....perhaps in 6 months I'll have it all down. Perhaps.
Then I have to recognize the fact that my 102 year old grandmother, who is one of the most influential and dear people in my life, has been dealing with some serious health issues over the past few months and continues to struggle to make a full recovery. And - being a knowledgeable adult - I recognize the Circle of Life and know that at some point I will have to say goodbye. I'm not sure I can, because she's been there for the first 44+ years of my life and how will I possibly function through that much more change? There will be a vast, empty space in my life, my heart....how will I deal with that? And how will that effect Eli....he's never had to deal with a death before. Not many people get to know their great-grandmother, but he's had her be an important part of his life for over ten years now. I can't possibly prepare for the delayed reactions that will bring on him.
Recently I see the approaching dark clouds of more loss on the horizon. It's too much, Lord, on top of everything else! Should things proceed and come to pass, I fear it will be far more than I can bear. It will signify the biggest loss of all and Lord, as much as I've leaned on and trusted in You through all of this...I fear I haven't the strength to make it through all that in tact. I know I need to just let go and trust You. Knowing and Doing are still working to come together, however.
Still, I get up each morning and plod off into the world. I smile and help, make small talk, and do my best to help others in any way I can. But all the while I'm waiting. Waiting to see what is waiting for us, for me, around the next corner. Living in anxiety and fear of what might happen. Waiting for the next blow. Waiting to see if the next storm comes. Waiting to be left behind again, to be left alone to deal with the aftermath, stuck...abandoned, and no where to turn. Waiting to see just how much more can be piled on me before I breakdown.
But I always get back up and plod forward again. At least so far, I've been able to! And that I count as a blessing. It proves I'm stronger than I thought I was. I'm sure I have limits though and my biggest fear is that one of these days, I won't have it in me to get back up and move on. Then where will we be?
Is this what my Eli goes through on a daily basis? These overwhelming emotions, the anxiety? The strain of school, the pressure? I recognize the anger that leaks out of him when he's feeling consumed by the strain of it all. I hear it leaking out of me at times too. I can verbalize my thoughts, my emotions, as well as recognize the reasons behind why I'm feeling the way I do.
Eli cannot.
He knows he feels horrid. He knows he's losing grip on the control of it all very quickly. He's lashing out because it hurts, it's consuming him. He has no idea why or what triggered it. He has no way to explain or justify himself. He has no way to stop it all from happening.
So yes....these months have been deeply cutting, but in turn I am grateful for the insight. Some days, it helps me to help Eli. Other days, it just takes the only part of me that is left and sends it through the shredder. That was yesterday. Today, I was stronger.
A friend shared this beautiful reminder this morning:
Proverbs 3:5 "Trust the Lord with all your heart, and lean not on your own understanding.. ."
I will persevere to cling to that as my mantra while riding out this storm. I'm just hoping my own delayed reactions do not involve antidepressants or anxiety medication, like so many other autism parents I keep reading about. I hope that doesn't end up being my own delayed reaction.
Unfortunately, there's a darker side to living a life touched by autism also, not just for the person living with the diagnosis...but for the entire family.
Poor Eli. The strain of school has been getting to him. To the best of my knowledge, he's doing fairly well throughout the day...some minor outbursts, and near meltdown in math class yesterday, which was diverted by the quick thinking of his teacher... but I assume that he's keeping himself together overall. At least no one is communicating anything differently, so ... I go with the assumption of 'no news is good news' until I hear differently.
But when he gets home, hours after the fact, the strain of it all is apparent. Then he begins to have delayed reactions to the stress. Short-tempered, verbally harsh, sarcastic and flat out nasty, especially toward his brother. Lately he's been extremely bothered by "All the noise! There's so much noise!" I've read that "noise" can be physically painful to those on the autism spectrum. We're quick to eliminate all noise possible when he cries out. We've been working to give him the space and time he needs to decompress, to chill out. It's not always enough.
Some of us hide away in our computers trying to ride out the strain. Some of us get angry but sullen and quiet, trying to internalize the stress without further provoking the situation. Some of us throw up our hands and yell a little to relieve some of the pressure build up, but what does that solve really?! Not a thing. Some of us take turns doing a little bit of each.
Lately I myself have been blessed to experience some of the overwhelming emotions that Eli goes through. I say blessed, because as difficult as things have been for the last several months, it gives me a profound and deep understanding of what Eli is going through during his difficult times. And therefore, it gives me a glimpse in the window of how to approach him when my Eli disappears, and the neurological disorder takes over and steals my baby away from me right before my eyes.
The strain of Eli's increased mood-swings, his new tendency of not sleeping (which has increased to around once a week now), his fragile nature since the start of school, the new defiance and extreme nastiness that is presenting when he loses control of his emotions.....his new desire to run out of the house, and threatening to just keep on running, when he is upset.....these are all a part of it.
There's the fear of how I'm going to be a mom to a teenager who acts like this hovering in the background.
Then there's the sad awareness of all the wonderful people whom I have lost from of my life over the past few years. Some have died. Some have been ripped away. Some have moved away. Some have simply moved on. It happens. It's part of life.
It still hurts.
It still feels lonely and a little like abandonment, even if it wasn't meant to be.
Then I have started a new, wonderful job, splitting my time half between the job I've had for over 17 years, and the new one. I'm ready for a change, and I love it! But even positive change can be stressful, especially when you're trying to stuff your already-too-full brain with all kinds of new information, trying to remember everything, trying not to screw things up.....perhaps in 6 months I'll have it all down. Perhaps.
Then I have to recognize the fact that my 102 year old grandmother, who is one of the most influential and dear people in my life, has been dealing with some serious health issues over the past few months and continues to struggle to make a full recovery. And - being a knowledgeable adult - I recognize the Circle of Life and know that at some point I will have to say goodbye. I'm not sure I can, because she's been there for the first 44+ years of my life and how will I possibly function through that much more change? There will be a vast, empty space in my life, my heart....how will I deal with that? And how will that effect Eli....he's never had to deal with a death before. Not many people get to know their great-grandmother, but he's had her be an important part of his life for over ten years now. I can't possibly prepare for the delayed reactions that will bring on him.
Recently I see the approaching dark clouds of more loss on the horizon. It's too much, Lord, on top of everything else! Should things proceed and come to pass, I fear it will be far more than I can bear. It will signify the biggest loss of all and Lord, as much as I've leaned on and trusted in You through all of this...I fear I haven't the strength to make it through all that in tact. I know I need to just let go and trust You. Knowing and Doing are still working to come together, however.
Still, I get up each morning and plod off into the world. I smile and help, make small talk, and do my best to help others in any way I can. But all the while I'm waiting. Waiting to see what is waiting for us, for me, around the next corner. Living in anxiety and fear of what might happen. Waiting for the next blow. Waiting to see if the next storm comes. Waiting to be left behind again, to be left alone to deal with the aftermath, stuck...abandoned, and no where to turn. Waiting to see just how much more can be piled on me before I breakdown.
But I always get back up and plod forward again. At least so far, I've been able to! And that I count as a blessing. It proves I'm stronger than I thought I was. I'm sure I have limits though and my biggest fear is that one of these days, I won't have it in me to get back up and move on. Then where will we be?
Is this what my Eli goes through on a daily basis? These overwhelming emotions, the anxiety? The strain of school, the pressure? I recognize the anger that leaks out of him when he's feeling consumed by the strain of it all. I hear it leaking out of me at times too. I can verbalize my thoughts, my emotions, as well as recognize the reasons behind why I'm feeling the way I do.
Eli cannot.
He knows he feels horrid. He knows he's losing grip on the control of it all very quickly. He's lashing out because it hurts, it's consuming him. He has no idea why or what triggered it. He has no way to explain or justify himself. He has no way to stop it all from happening.
So yes....these months have been deeply cutting, but in turn I am grateful for the insight. Some days, it helps me to help Eli. Other days, it just takes the only part of me that is left and sends it through the shredder. That was yesterday. Today, I was stronger.
A friend shared this beautiful reminder this morning:
Proverbs 3:5 "Trust the Lord with all your heart, and lean not on your own understanding.. ."
I will persevere to cling to that as my mantra while riding out this storm. I'm just hoping my own delayed reactions do not involve antidepressants or anxiety medication, like so many other autism parents I keep reading about. I hope that doesn't end up being my own delayed reaction.
Tuesday, March 6, 2012
Not sure how to communicate with my son about his diagnoses
"Can we change the subject now?" is a commonly uttered phrase by Eli, generally followed by a huffy breath, and the occasional roll of the eyes.
He doesn't care to discuss anything further about a particular challenge he faced that day. He doesn't care to discuss what he maybe should have done instead of what he actually did. He doesn't want to explore any aspect of how a situation made him feel or let me try to help him heal from it.
He certainly doesn't care to talk about his diagnoses or anything related to his treatments or his current challenges!
It concerns me greatly. I am naturally a communicator, and a "fixer". I struggle desperately with not being able to talk in depth about these things with the one person it affects even more than me!
If I had my way, Eli and I would have long, glorious talks all about his thoughts on all of these things that impact his life. I would have us snuggling on the sofa, defining all the "labels" that have been stuck to his forehead, so we could clarify and explain them and figure out just what that means in relation to "Eli the Boy", in a way that he could understand it and be okay with it.
We'd go for walks, and I'd break it all down for him so that it wasn't an overwhelming enigma. I'd take away all the fear! He'd be comforted and secure and understand he wasn't some oddity. We would have healing conversations about his feelings, his fears, his greatest challenges that he's facing right now, and how I can better help him overcome anything that he currently believes is standing in his way. After I was finished, he wouldn't feel like he was different. He'd feel empowered! He would think, "Sure I've got this challenge to face, but I know I'll be like Superman and leap over it because I've got my mom and dad and brother and a whole lot of love and support and it's not going to be a problem because this is not a scary thing at all! I'm super Eli!"
Instead...when I try to broach a subject with him, I get cut off. "Okaaaaay mom.... I got it.... can we drop it now???" Exaggerated huffy breath. I haven't even really said anything yet, but he knows what I'm bringing up and he wants none of it.
So we drop it.
I read an article the other day about a young man (late teens I believe) who was reading something about Asperger's and he recognized himself as the article unfolded. He said to his parents, "This is me, isn't it?!" His parents had never told him he was on the spectrum, never attempted to help him to understand or explain his challenges to him. He stated in the article that all these years, he'd just thought he was really dumb.
It broke my heart! That poor kid! Why didn't his parents try to do everything they could to help him? Why did they hide it, especially from HIM?! It isn't fair of me to judge them, as I don't know their circumstances, and I certainly am not walking in their shoes. Possibly they thought they were shielding him! But I kept thinking of the emotional torment he'd been enduring silently for years all alone, not knowing, not understanding. I don't want that for E!!!
I think my biggest worry for Eli is that he IS capable of understanding there's something "different" about him, and maybe he doesn't want to talk about it because it's easier to ignore it and pretend it's not there. I don't know if that's healthy for him? There's a slim chance that he just doesn't understand, but Eli is incredibly bright, and I really don't believe that to be true. Then again, I'm never entirely sure what's going on in his little head so....???? I'm concerned it's denial and fear that doesn't allow him to talk about it and his way of coping is to push it aside and avoid it.
I don't want to force the issue and make him super uncomfortable. Maybe he doesn't fully get it, and if I force it, then he will start to feel like there's a problem with him. Maybe it's a nicer feeling for him to not ask questions, ignore it and just Live His Life and be himself. I'm all for that!
Some things we must discuss, such as a particular inappropriate behavior that may have occurred, why it was a problem and what is expected of him. Those topics must be addressed quickly, or he forgets he did them (it's part of the Tourette Syndrome) - and while he doesn't LIKE to discuss it, I do force it on those occasions, because he has to deal with consequences and learning appropriate behaviors.
As for his many diagnoses... for now, if he doesn't want to discuss them, I plan to let him be. We don't have to talk about it. Sometimes I ask him if there's anything he wants to know, (NO!) or if I can explain anything that is confusing to him, (NO!) and I always reiterate that if he ever has any questions about anything, he should never be afraid to ask, (Okaaaaaayyyyy...can we change the subject now??!!)
Those fears haunt me though! What if he's suffering on the inside, and he's not sharing it? What if his perception of himself is totally skewed and wrong and he thinks he's damaged or broken and he won't verbalize it?? Ugh! Those thoughts about do me in! How do I make sure he understands and has the right information about all of this if he flat out refuses to discuss or share?
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