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 anger. Show all posts
Showing posts with label anger. 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.
Thursday, May 17, 2012
...help...
Last weekend was a difficult one. It was also a wonderful one!
Last Friday evening I was able to attend another glorious Mother Daughter Banquet with my beautiful Grammy (maternal grandmother) who is 101 years old. What a blessing to be able to attend together another year! Also in attendance were my own Mother, Ruth; my Sister, Rachel; my Aunt Jennie, and two of my Grammy's very special friends, Troi and Janie. We had a marvelous time and my uncle Ken (mom's brother, husband to Jennie) was one of the all-male team of servers. We ate lasagna and all kinds of yummy things, heard music from the Children's Choir, and received roses. I never lost site of the fact that I'm not in control and I never know when THIS might be the last time, so I was quite grateful that we were all gathered together again this year to celebrate Mother's Day with Grammy. It was very important to me that I was able to attend again this year. I'd left early from work Friday afternoon and traveled to where my Grammy lives, and I stayed the night in a hotel room with my sister, which my Papa so graciously paid for as a gift to us girls. It was such a wonderful time!
However, this meant I didn't see Eli from Friday morning, when I left for work, until I got back home late morning on Saturday, a little over 24 hours.
E was really excited when I got home and we hugged a lot and said how much we missed each other. We were home together Saturday afternoon, but then I left again....
Saturday evening the girls from my Clump (my small group from church) all went to see the production of In The Heights, http://en.wikipedia.org/wiki/In_the_Heights which was fantastic!!! I'm ready to head for New York and see a Broadway Play now!!! I left the house about 5:40 p.m. and didn't get home again until nearly 10:30 p.m. Eli was already in bed, so I didn't see him again until Sunday morning. But let's backtrack a bit...
Before I left Saturday evening to meet the girls, Eli had a pretty serious meltdown. In fact, it was so serious I now have a whole new set of concerns about his teenage and adult years, but we'll not focus on that today. Let's just say I've not seen Eli that angry and out of control in several years. If ever.
Am I to blame? Was my absence the night before the reason he became so extreme in his frustration with his video game, and therefore so quickly and severely enraged when his dad spoke to him about a behavior he'd just presented?
The whole scene occurred right as I was getting out of the shower. There I was, running around in a towel trying to regain control of the situation (wasn't going to happen) and I nearly canceled my plans to attend the play because I wasn't going to leave Ben and Ash alone to deal with it all. But after 30 minutes or so Eli got himself under control after spending some quiet time in his room. He came out again, after he picked up all the items he'd thrown about during his fit (that was required before he could leave the room; first calm down...then pick everything up and clean up the mess he'd made, then come out).
Eli came first to me, then with a little prompting, he went to Ben and apologized. He was doing alright, so I went to dinner and the musical after all. I called home to check on things, and all was well. Eli was keeping it together, watching a movie and doing just fine.
The next morning in church, as I stood on stage singing with the Praise Team, I could see Ben leaning over to speak quietly to Eli and I could see we had a problem. I recognized the look on Eli's face. The scowl that tells me a dark, quiet room is needed. Now. Possibly ten minutes ago.
By the time I went to sit down, he was still seething. He was angry because he couldn't go to the nursery where Ash was serving that day. Eli's too old for the nursery, and they had several kids down there that morning... there was no need for him to go in there as well.
He didn't like that answer.
I was fearful he would erupt, the anger was just rolling off him... so I asked him to take a walk with me. He refused several times, but I whispered that I may have been asking nicely, but that I was indeed insisting he come with me. He threw the hymnal he was holding to the side and stomped out of the sanctuary. There was no screaming, no tantrum however, so Thank God for small favors.
I spent my Mother's Day morning in my church office (where I work my second, 1/2 time job) with a livid ten year old. He'd snuggled with me, leaned into me for about 20 seconds when we first went into the room and allowed me to comfort him, and then the anger took over and he stormed away from me and sat on a different couch, not communicating or even looking at me.
Eli spent ten minutes raking his fingernails across the fabric of the couch and breathing so hard and fast I was sure he would hyperventilate. I kept the lights out and talked softly about the things I could see out the window...how green the leaves were, how the rain made me sleepy, how I remembered what rainy Sundays felt like when I was a little girl, and how they feel to me now.
Eventually - after a lot of encouragement - he was able to let me know without talking to me (he just wasn't ready for that yet) that he sort of knew what he was mad about...but he didn't really understand why he was feeling so severely angry. He was mad that he wasn't able to go to the nursery with Ash. But no...Eli didn't understand at all why his emotions were so hostile and so overwhelming the last few days.
After about half an hour I knew he was going to be okay. I'd missed the entire service and I could hear singing and I hoped someone had seen me leave with Eli and understood why I wasn't there singing with them.
Eli started getting goofy and silly acting, overcompensating with baby-talk and silliness... because his anger had dissipated and he was now feeling so much better. When he's feeling super happy, the goofiness emerges.
Ben came searching for us, concerned and confused, but found us in a stage of healing. We scrapped the eating-out for Mother's Day plan and exchanged it for a trip to the grocery store instead - where Ash and Eli waited in the car, because Eli didn't need the over-stimulation of the grocery store - and then we proceeded home to have a glorious afternoon of rain-induced napping and some much needed downtime. At least that was what I did...I'm not sure what the boys were all doing at that point.
He's been fine ever since. I warned his teacher he'd been having some serious anger issues all weekend long and to watch for signs, but he's been pretty even keel this week.
You know I've always been good in a crisis. I'm the fixer. I'm the protector. It's later, after all the bad stuff has passed and is over with, then...then I fall apart. I remain calm and strong while I have to, but when it's safe, I have my release. Usually this involves tears and utter exhaustion.
This weekend - as fantastic and glorious as many parts were - it completely wore me out. More than that it brings fear to my heart, as well as a greater sense of how important it is to make Autism Awareness a top priority. Not just for parent and teachers, but for entire communities.
Witnessing my beloved, precious child's meltdown, his anger, his hostility, his complete loss of control.... everyone needs to be aware of the struggles our kids are dealing with now!!! And we parents need help. We need help now! Because in a decade these precious babies of ours are going to be adults.
I'm prayerfully hopeful that between now and then My Eli will have learned coping strategies that allow him to keep it together. But what if he can't? Then I want all of society to be aware, to recognize the signs, to HELP! Police officers need training. Employers need training. Programs need to be available to help society as well as our kids and us. Compassion needs to flow.
Communities need to come together to embrace our kids who will one day be adults. Parents need financial support now in order to obtain the therapies for their children NOW. For example, Eli could really use help with pragmatic speech therapy...meaning he doesn't need help learning how to talk, he needs help learning how to have a conversation. Especially with complete strangers. He struggles terribly with that, and what adult doesn't need that skill? But he didn't score low enough to receive the therapy through the school system, so we'd have to go to a private speech therapist and pay for it out of pocket. Even if insurance helped somewhat, shelling out a co-pay week after week, month after month is more than we can do.
While I recognize that there's a lot of media coverage happening now because Autism is now considered an epidemic, and in April everyone was jumping on the band wagon to yell, "Hey! Look at me! I went blue and I'm aware!" -- and that's great! Really! We NEED awareness!!! -- but it's May now...
and my kid is still on the Spectrum...
and we still are severely limited to what we have access to in order to help him. I know there are a lot of people out there talking and advocating, and again, that's really great.... but I guess I have this message to You....
YOU who are in the position of making these decisions, of making these programs happen, of making the insurance and financial assistance based on diagnosis, not income, available so that we parents can take care of our children now, to help teach our children the skills they need so that in a decade they can more easily function in society in a way YOU expect them to....
Last Friday evening I was able to attend another glorious Mother Daughter Banquet with my beautiful Grammy (maternal grandmother) who is 101 years old. What a blessing to be able to attend together another year! Also in attendance were my own Mother, Ruth; my Sister, Rachel; my Aunt Jennie, and two of my Grammy's very special friends, Troi and Janie. We had a marvelous time and my uncle Ken (mom's brother, husband to Jennie) was one of the all-male team of servers. We ate lasagna and all kinds of yummy things, heard music from the Children's Choir, and received roses. I never lost site of the fact that I'm not in control and I never know when THIS might be the last time, so I was quite grateful that we were all gathered together again this year to celebrate Mother's Day with Grammy. It was very important to me that I was able to attend again this year. I'd left early from work Friday afternoon and traveled to where my Grammy lives, and I stayed the night in a hotel room with my sister, which my Papa so graciously paid for as a gift to us girls. It was such a wonderful time!
However, this meant I didn't see Eli from Friday morning, when I left for work, until I got back home late morning on Saturday, a little over 24 hours.
E was really excited when I got home and we hugged a lot and said how much we missed each other. We were home together Saturday afternoon, but then I left again....
Saturday evening the girls from my Clump (my small group from church) all went to see the production of In The Heights, http://en.wikipedia.org/wiki/In_the_Heights which was fantastic!!! I'm ready to head for New York and see a Broadway Play now!!! I left the house about 5:40 p.m. and didn't get home again until nearly 10:30 p.m. Eli was already in bed, so I didn't see him again until Sunday morning. But let's backtrack a bit...
Before I left Saturday evening to meet the girls, Eli had a pretty serious meltdown. In fact, it was so serious I now have a whole new set of concerns about his teenage and adult years, but we'll not focus on that today. Let's just say I've not seen Eli that angry and out of control in several years. If ever.
Am I to blame? Was my absence the night before the reason he became so extreme in his frustration with his video game, and therefore so quickly and severely enraged when his dad spoke to him about a behavior he'd just presented?
The whole scene occurred right as I was getting out of the shower. There I was, running around in a towel trying to regain control of the situation (wasn't going to happen) and I nearly canceled my plans to attend the play because I wasn't going to leave Ben and Ash alone to deal with it all. But after 30 minutes or so Eli got himself under control after spending some quiet time in his room. He came out again, after he picked up all the items he'd thrown about during his fit (that was required before he could leave the room; first calm down...then pick everything up and clean up the mess he'd made, then come out).
Eli came first to me, then with a little prompting, he went to Ben and apologized. He was doing alright, so I went to dinner and the musical after all. I called home to check on things, and all was well. Eli was keeping it together, watching a movie and doing just fine.
The next morning in church, as I stood on stage singing with the Praise Team, I could see Ben leaning over to speak quietly to Eli and I could see we had a problem. I recognized the look on Eli's face. The scowl that tells me a dark, quiet room is needed. Now. Possibly ten minutes ago.
By the time I went to sit down, he was still seething. He was angry because he couldn't go to the nursery where Ash was serving that day. Eli's too old for the nursery, and they had several kids down there that morning... there was no need for him to go in there as well.
He didn't like that answer.
I was fearful he would erupt, the anger was just rolling off him... so I asked him to take a walk with me. He refused several times, but I whispered that I may have been asking nicely, but that I was indeed insisting he come with me. He threw the hymnal he was holding to the side and stomped out of the sanctuary. There was no screaming, no tantrum however, so Thank God for small favors.
I spent my Mother's Day morning in my church office (where I work my second, 1/2 time job) with a livid ten year old. He'd snuggled with me, leaned into me for about 20 seconds when we first went into the room and allowed me to comfort him, and then the anger took over and he stormed away from me and sat on a different couch, not communicating or even looking at me.
Again...is this all because of me and my lack of being there?
Eli spent ten minutes raking his fingernails across the fabric of the couch and breathing so hard and fast I was sure he would hyperventilate. I kept the lights out and talked softly about the things I could see out the window...how green the leaves were, how the rain made me sleepy, how I remembered what rainy Sundays felt like when I was a little girl, and how they feel to me now.
I asked him if he even knew why he was feeling so mad.
Eventually - after a lot of encouragement - he was able to let me know without talking to me (he just wasn't ready for that yet) that he sort of knew what he was mad about...but he didn't really understand why he was feeling so severely angry. He was mad that he wasn't able to go to the nursery with Ash. But no...Eli didn't understand at all why his emotions were so hostile and so overwhelming the last few days.
After about half an hour I knew he was going to be okay. I'd missed the entire service and I could hear singing and I hoped someone had seen me leave with Eli and understood why I wasn't there singing with them.
Eli started getting goofy and silly acting, overcompensating with baby-talk and silliness... because his anger had dissipated and he was now feeling so much better. When he's feeling super happy, the goofiness emerges.
Ben came searching for us, concerned and confused, but found us in a stage of healing. We scrapped the eating-out for Mother's Day plan and exchanged it for a trip to the grocery store instead - where Ash and Eli waited in the car, because Eli didn't need the over-stimulation of the grocery store - and then we proceeded home to have a glorious afternoon of rain-induced napping and some much needed downtime. At least that was what I did...I'm not sure what the boys were all doing at that point.
He's been fine ever since. I warned his teacher he'd been having some serious anger issues all weekend long and to watch for signs, but he's been pretty even keel this week.
You know I've always been good in a crisis. I'm the fixer. I'm the protector. It's later, after all the bad stuff has passed and is over with, then...then I fall apart. I remain calm and strong while I have to, but when it's safe, I have my release. Usually this involves tears and utter exhaustion.
This weekend - as fantastic and glorious as many parts were - it completely wore me out. More than that it brings fear to my heart, as well as a greater sense of how important it is to make Autism Awareness a top priority. Not just for parent and teachers, but for entire communities.
Witnessing my beloved, precious child's meltdown, his anger, his hostility, his complete loss of control.... everyone needs to be aware of the struggles our kids are dealing with now!!! And we parents need help. We need help now! Because in a decade these precious babies of ours are going to be adults.
I'm prayerfully hopeful that between now and then My Eli will have learned coping strategies that allow him to keep it together. But what if he can't? Then I want all of society to be aware, to recognize the signs, to HELP! Police officers need training. Employers need training. Programs need to be available to help society as well as our kids and us. Compassion needs to flow.
People need to help!
Communities need to come together to embrace our kids who will one day be adults. Parents need financial support now in order to obtain the therapies for their children NOW. For example, Eli could really use help with pragmatic speech therapy...meaning he doesn't need help learning how to talk, he needs help learning how to have a conversation. Especially with complete strangers. He struggles terribly with that, and what adult doesn't need that skill? But he didn't score low enough to receive the therapy through the school system, so we'd have to go to a private speech therapist and pay for it out of pocket. Even if insurance helped somewhat, shelling out a co-pay week after week, month after month is more than we can do.
While I recognize that there's a lot of media coverage happening now because Autism is now considered an epidemic, and in April everyone was jumping on the band wagon to yell, "Hey! Look at me! I went blue and I'm aware!" -- and that's great! Really! We NEED awareness!!! -- but it's May now...
and my kid is still on the Spectrum...
and we still are severely limited to what we have access to in order to help him. I know there are a lot of people out there talking and advocating, and again, that's really great.... but I guess I have this message to You....
YOU who are in the position of making these decisions, of making these programs happen, of making the insurance and financial assistance based on diagnosis, not income, available so that we parents can take care of our children now, to help teach our children the skills they need so that in a decade they can more easily function in society in a way YOU expect them to....
YOU are not moving fast enough for my child. He needs you now.
Subscribe to:
Posts (Atom)