I suppose only if you have autism affecting your life can you fully appreciate the full range of emotions you can be put through. The closest thing I can equate it to is being pregnant. I remember pregnancy well, even 10+ years later....the feeling of joy, the feeling of fear, being so sad, then so happy...slipping from one extreme to another within a matter of moments. Back then I blamed hormones. Now...my child is the catalyst.
No one else can put me through the full gamut of emotions that Eli can. Take last week for example. The first week of school. I started the weekend out with so much ANXIETY about how Eli would handle fifth grade. Would his teachers accept him? Would they find me annoying as I tried to help them understand my child? Would they be willing to work with him and meet him where he is?
Then after the first day went so well for E, I felt so much HAPPINESS and HOPE! But at the same time I've been PENSIVE and WATCHFUL...WARY even, waiting for the meltdown to happen because of the strain of keeping his behavior together all throughout the day. Make no mistake...he did very well in school the first week. But I knew what was to come eventually.
Open House was Thursday night. I got to meet his teachers and then I was EXCITED for him because they were all so sweet and wonderful! But then later in the evening my emotions swung to WORRY as he could not sleep Thursday night. In addition to the worry comes the HELPLESSNESS and the sense of Flailing About, not knowing what to do or how to fix the problem. How can you make your child sleep when his little body won't still and his busy mind just won't shut down?
Friday morning brought a little RELIEF when I realized he had ended up sleeping for a few hours! But then there was great DESPAIR and SADNESS as I arrived home Friday after work to hear the screams of my child, lost in the throes of a full-blown meltdown...because by 5 o'clock on the Friday of the first week of school, with only three hours of sleep under his belt, my baby had had enough.
I was overwhelmed with so much LOVE, PITY and FEAR all at the same time, watching Eli stand on the edge of the yard as anger and rage gripped and coursed through him. Actually fear is not strong enough....I was TERRIFIED he was about to bolt. He looked so primal, standing there at the edge of our property...refusing to promise me that he would stay in the yard. Refusing to come to the porch. Refusing to let me come near. I knew if I tried to approach, he would run, so I stayed where I was with Ben's car between us, to give Eli the sense of separation, the sense of a barrier, that he seemed to need.
Eli stood there with his shoulders hunched, folding in on himself, with his head cocked to the right at an odd angle... it was a defensive posture, a cornered animal stance, and my fear was that he would suddenly bolt into the road, or the woods, and I wouldn't be able to catch him or protect him. That I might lose him!
As terrified as I was, I kept my voice calm and my tone lighthearted, and tried to make my words soothing, comforting and reassuring to him. I knew what he needed right then was time. Time to come back. Time to calm down. Eli could not be rushed or pushed. This was his world we were both currently lost in, and I was going to have to wait him out.
I got a book and sat on the porch swing. I invited him several times to join me. My voice pleasant. My smile warm. My words inviting. My heart broken and screaming Why!?. This poor little boy, who has currently barricaded himself behind a tree trunk...this precious angel of mine, who has kept it together in his classrooms all week....is finally releasing the stress that's been building all week. But why does he have to go through this? Why is it so hard for him?
I kept reminding myself to be patient...to wait him out.
Finally he began to crawl toward me. Creeping. Silently. Slowly. Trying not to be seen. But I saw him. And I waited. I let him inch his way toward me in his own time. You could see the battle going on behind his face.... did he really want to give up the anger to come read a book with mom? Little by little he kept creeping until he got to the last tree between us. He peeked out at me several times, always ducking behind the tree trunk again.
When at last I caught his eye, I smiled. "You want to come read this book with me?" Only then did he stand up and walk across the yard to me. And we read. We talked. And he was okay again. It had been nearly an hour at this point since I had arrived home to the screaming, and I finally got to go inside. My reward was that Eli came inside with me. I was feeling not only RELIEF again, but also GRATITUDE and THANKFULNESS that I'd been able to help my son.
Later I would cry and the SAD and FEAR would once again overwhelm me. The meltdowns have been few and far between all summer....we have not missed them. But now the stress and strain of school is upon us. The meltdowns seem much more intense. I've never been AFRAID that Eli would run away from the house before, so this is a new concern. I cried and screamed out to God later when I was alone that I can't do this! I can't even share it with anyone because who would really understand? And thank goodness no one really does! But then I calmed down and realized that I would do this, because I had to. And I supposed that's why I write...to purge it from me. To reach out to those who actually do understand and live it and maybe it will help them to know they aren't actually alone either. There are a lot of us out here who do know, firsthand, all the emotions we're going through.
We WILL do this....because we have to.
About Me
- Mama Bee
- Ohio, United States
- My journey before and after bariatric surgery.
Monday, August 27, 2012
Monday, August 20, 2012
1st Day of 5th Grade
School begins in just a few short hours. Blessedly, Eli is sleeping!
Mommy....is not.
The last couple weeks have been a transition for E, as he has come from "NO! NOT SCHOOL! NO NO NO NO NO NO....!!!" to "....shrug...I'm kinda ready, kinda not..." to "It'll be nice to see my friends again."
He doesn't want to talk about school. That's hard for me. To me, if there's a problem, then we need to sit down and talk it all out, so Eli can be heard and comforted and supported and encouraged.
Eli wants no part of that.
The autism prevents him from being able to wrap his head around specifically what is bothering him. He knows when he thinks about school that he's feeling yucky inside. But he can't pinpoint specifically what he's feeling anxious about and then put it into words to express what he is feeling, let alone why he's feeling that way.
But Eli's done a lot of internal preparation over the last two weeks on his own. He started out very nasty. Hateful, even. Verbally lashing out at immediate family members, screaming at the dog when she frustrated him, going from even-keel to instant anger and then, being so overwhelmed, that he's just shut down for an hour or more, sometimes hiding, sometimes just brooding and not talking but still in the same room. Eli's told us before that at times like this he just needs time and space....don't touch him, don't try to talk to him, just let him have the time he needs to calm down. So that's what we've tried to do.
Over the past five days or so, he's spent an impressive number of hours swinging on the porch swing, lost in "his game"... best I can describe His Game is that when he was little, and completely obsessed with Star Wars, he began a game in his head. He would run in circles on our bed and have this magnificent battle scene going on in his head. He would literally do this for an hour or more and you didn't dare interrupt him when he was immersed in his game or he would become intensely upset.
Needless to say, when we got a new bed last year, E was fairly devastated when he learned he would no longer be able to run in circles on it. But he's found other locations in which to play his game, and one of his favorites - at least during the warmer months - is to sit on the porch swing and lose himself entirely in the game.
His Game is a huge comfort to Eli...he loses himself completely in the world he has created. I'm not sure it's Star Wars any longer...I think it's progressed beyond that to detailed worlds and characters of his own creation, but I know there are still battles being waged from the sounds he makes. Over the past week, he's disappeared into His Game over and over to comfort himself and as a way to deal with the anxiety of the new school year. When Eli's here at home, he knows he is safe to go to that other world he has created. It's just a part of who Eli is, he knows he is accepted here.
Two new pair of soft jammies and a new bedtime routine of reading with 'Mimmy' (Mommy - me) have been a big comfort to him as well. The reading has become something he's insisting on, so we have had to make a time allotment for it. If it comforts and calms him, and helps him to sleep, then I'm fine with working it in. I wonder if it will last the entire school year or, once he settles in to 5th grade and the fear of the newness of it all begins to fade away, if he'll discard the reading time? It will be interesting to see what morning routines he establishes for himself to cope with a new school year. Will they be the same as last year's routines, or will they be new?
Will he continue to have sleepless nights? Or will the school days exhaust him so he can sleep as well as he used to?
I think my own anxiety and sleepless night is being fueled by these questions, but even more by, Will his teachers love, tolerate, help, and work with him as much as last year's teachers?
As always we will strive to take one day at a time and lean on The Father for our strength and endurance, and trust that we will be shown the way to proceed to help Eli learn the skills he needs to cope with everyday life and the world around him.
Right now, I'm going to proceed back to bed and see if I can manage 4 hours of sleep before the alarm screams at me. Keep my little man in your thoughts and prayers tomorrow as he begins his first day of 5th grade.
Mommy....is not.
The last couple weeks have been a transition for E, as he has come from "NO! NOT SCHOOL! NO NO NO NO NO NO....!!!" to "....shrug...I'm kinda ready, kinda not..." to "It'll be nice to see my friends again."
He doesn't want to talk about school. That's hard for me. To me, if there's a problem, then we need to sit down and talk it all out, so Eli can be heard and comforted and supported and encouraged.
Eli wants no part of that.
The autism prevents him from being able to wrap his head around specifically what is bothering him. He knows when he thinks about school that he's feeling yucky inside. But he can't pinpoint specifically what he's feeling anxious about and then put it into words to express what he is feeling, let alone why he's feeling that way.
But Eli's done a lot of internal preparation over the last two weeks on his own. He started out very nasty. Hateful, even. Verbally lashing out at immediate family members, screaming at the dog when she frustrated him, going from even-keel to instant anger and then, being so overwhelmed, that he's just shut down for an hour or more, sometimes hiding, sometimes just brooding and not talking but still in the same room. Eli's told us before that at times like this he just needs time and space....don't touch him, don't try to talk to him, just let him have the time he needs to calm down. So that's what we've tried to do.
Over the past five days or so, he's spent an impressive number of hours swinging on the porch swing, lost in "his game"... best I can describe His Game is that when he was little, and completely obsessed with Star Wars, he began a game in his head. He would run in circles on our bed and have this magnificent battle scene going on in his head. He would literally do this for an hour or more and you didn't dare interrupt him when he was immersed in his game or he would become intensely upset.
Needless to say, when we got a new bed last year, E was fairly devastated when he learned he would no longer be able to run in circles on it. But he's found other locations in which to play his game, and one of his favorites - at least during the warmer months - is to sit on the porch swing and lose himself entirely in the game.
His Game is a huge comfort to Eli...he loses himself completely in the world he has created. I'm not sure it's Star Wars any longer...I think it's progressed beyond that to detailed worlds and characters of his own creation, but I know there are still battles being waged from the sounds he makes. Over the past week, he's disappeared into His Game over and over to comfort himself and as a way to deal with the anxiety of the new school year. When Eli's here at home, he knows he is safe to go to that other world he has created. It's just a part of who Eli is, he knows he is accepted here.
Two new pair of soft jammies and a new bedtime routine of reading with 'Mimmy' (Mommy - me) have been a big comfort to him as well. The reading has become something he's insisting on, so we have had to make a time allotment for it. If it comforts and calms him, and helps him to sleep, then I'm fine with working it in. I wonder if it will last the entire school year or, once he settles in to 5th grade and the fear of the newness of it all begins to fade away, if he'll discard the reading time? It will be interesting to see what morning routines he establishes for himself to cope with a new school year. Will they be the same as last year's routines, or will they be new?
Will he continue to have sleepless nights? Or will the school days exhaust him so he can sleep as well as he used to?
I think my own anxiety and sleepless night is being fueled by these questions, but even more by, Will his teachers love, tolerate, help, and work with him as much as last year's teachers?
As always we will strive to take one day at a time and lean on The Father for our strength and endurance, and trust that we will be shown the way to proceed to help Eli learn the skills he needs to cope with everyday life and the world around him.
Right now, I'm going to proceed back to bed and see if I can manage 4 hours of sleep before the alarm screams at me. Keep my little man in your thoughts and prayers tomorrow as he begins his first day of 5th grade.
Tuesday, August 7, 2012
Take this from me....
Father, You know I have had to learn to be grateful in all things. Sometimes it takes me a while to get to the point where I remember...but in time I always come back around to James 1:2-3.
Remember Father? Last October, when we got Eli's diagnosis? Remember that car ride home...how numb I was? How surreal it all felt and looked....how, to this day, the visual memory of the trip through Columbus is all silver and glowing outside the car windows? What was that?
And I couldn't think. All I had was weird abbrevations and words I didn't know rolling around in my head. "PDD-NOS..... Autism Spectrum Disorder.... Pervasive...it means it effects everything in his life....autism....the most difficult diagnosis I've ever done.....your son is autistic....Eli is autistic...my baby is autistic....."
Remember Lord, how brave I tried to be but how I ended up flailing around with the emotions days later and how the panic moved in and choked me until Ben assured me it was all true, and I could finally accept it? Remember all the DOUBTS that filled me, but between You and Ben, I found comfort and a newfound purpose in this hand we've been dealt?
I finally saw the angel You had sent me, Lord, and I was humbled that You had found me worthy to care for this child! I knew we'd had rough times in the past with Eli, and would have more to come, but I embraced this gift You have given me...the gift of opportunity and privilege to help Eli. You have trusted me, therefore I am confident in my ability to be all that Eli needs me to be for him.
I've taken great comfort in knowing that Eli often turns to me in the times he needs calmed or comforted. When no one else can break through the storm of a meltdown that is overwhelming him, I am blessed that I am the one who can reach him, calm him, be the person he latches on to, to pull him out of the emotional hurricane he's lost in, bring him back into reality and safety. It's not pride Father that I feel in these times. It's a sense of comfort and strength ... and a sense of healing that comes straight from You, coursing though me and into Eli to rescue him. You know my heart! Even during the weary times, you know HOW MUCH I Love this boy! You know how deeply my emotions run for this child who keeps us all on our toes day in and day out. He's so smart! So funny! So delightful! So unpredictable.
Lord... I might be tempted to ask You to save Eli from the Autism Monster that plagues him, but I would never ask You to take any of this from me. This is the cross You have asked me to carry, Father and I will take joy in the trial, knowing the testing of my faith will build perserverance.
But this new thing Lord, I humbly ask you to take this from me. In fact, I lay down before you, with my face to the floor, tears flowing freely and I plead with you....
These new hormonal shifts Eli is dealing with, the harsh emotions that are taking him over lately, the inability to effectively and appropriately communicate what his needs, his emotions are.... I can deal with most of it. But not the anger he keeps directing at me.
I can't handle the hate that glares out of those pale eyes, Father. I am supposed to be the one who loves him best and most, who comforts and protects him...the one who he runs to when he can't deal with the world around him. So I cannot possibly be the person he hates like that! The person he won't let near him, won't speak to, the person he holds at a distance and won't let near him. No no! I am supposed to be the one he'll let in after he blocks the rest of the world out! I can't be shut out with the rest of the world! Who will rescue him then? Who will comfort him and bring him back from the edge?? That's supposed to be me!
For three days now, he's looked at me with those cold, glaring eyes. For three days, he's been quick to anger, yelled at me, lashed out verbally, screamed and stormed and raged and despised. And yes, hated. He's so mad and he can't tell me why. He can't figure out for himself why he's feeling the way he's feeling and he flat out shuts down when I try to talk to him about it. But his eyes seethe anger and his tongue drips with venom, if and when he'll speak to me.
Tonight was my breaking point. The tears flowed as my heart broke into five hundred pieces for this child I love more than life itself. The pain of being on the receiving end of his hatred.... Father, please.... I know how to be the one You chose to protect Eli and love Eli and comfort and rescue and accept and understand and tolerate and explain Eli.... but I cannot be the person he looks at with those eyes filled with hatred when his anger takes him over. I've seen those eyes before...another person, another time...I survived that. But I'm definitely not strong enough to endure those eyes from my sweet child.
Once again I come back around to James, as well as remembering that You did not take the cup from your very own Son...so why should You take this cup from me? I have no right to even ask this of You. Father, it is Your Will, not mine. But I am currently not equipped to deal with the pain of this. But as always, I will trust You and know You will provide me with what I need.
It's going to be a while before I can take joy in this trial however.
Remember Father? Last October, when we got Eli's diagnosis? Remember that car ride home...how numb I was? How surreal it all felt and looked....how, to this day, the visual memory of the trip through Columbus is all silver and glowing outside the car windows? What was that?
And I couldn't think. All I had was weird abbrevations and words I didn't know rolling around in my head. "PDD-NOS..... Autism Spectrum Disorder.... Pervasive...it means it effects everything in his life....autism....the most difficult diagnosis I've ever done.....your son is autistic....Eli is autistic...my baby is autistic....."
Remember Lord, how brave I tried to be but how I ended up flailing around with the emotions days later and how the panic moved in and choked me until Ben assured me it was all true, and I could finally accept it? Remember all the DOUBTS that filled me, but between You and Ben, I found comfort and a newfound purpose in this hand we've been dealt?
I finally saw the angel You had sent me, Lord, and I was humbled that You had found me worthy to care for this child! I knew we'd had rough times in the past with Eli, and would have more to come, but I embraced this gift You have given me...the gift of opportunity and privilege to help Eli. You have trusted me, therefore I am confident in my ability to be all that Eli needs me to be for him.
I've taken great comfort in knowing that Eli often turns to me in the times he needs calmed or comforted. When no one else can break through the storm of a meltdown that is overwhelming him, I am blessed that I am the one who can reach him, calm him, be the person he latches on to, to pull him out of the emotional hurricane he's lost in, bring him back into reality and safety. It's not pride Father that I feel in these times. It's a sense of comfort and strength ... and a sense of healing that comes straight from You, coursing though me and into Eli to rescue him. You know my heart! Even during the weary times, you know HOW MUCH I Love this boy! You know how deeply my emotions run for this child who keeps us all on our toes day in and day out. He's so smart! So funny! So delightful! So unpredictable.
Lord... I might be tempted to ask You to save Eli from the Autism Monster that plagues him, but I would never ask You to take any of this from me. This is the cross You have asked me to carry, Father and I will take joy in the trial, knowing the testing of my faith will build perserverance.
But this new thing Lord, I humbly ask you to take this from me. In fact, I lay down before you, with my face to the floor, tears flowing freely and I plead with you....
These new hormonal shifts Eli is dealing with, the harsh emotions that are taking him over lately, the inability to effectively and appropriately communicate what his needs, his emotions are.... I can deal with most of it. But not the anger he keeps directing at me.
I can't handle the hate that glares out of those pale eyes, Father. I am supposed to be the one who loves him best and most, who comforts and protects him...the one who he runs to when he can't deal with the world around him. So I cannot possibly be the person he hates like that! The person he won't let near him, won't speak to, the person he holds at a distance and won't let near him. No no! I am supposed to be the one he'll let in after he blocks the rest of the world out! I can't be shut out with the rest of the world! Who will rescue him then? Who will comfort him and bring him back from the edge?? That's supposed to be me!
For three days now, he's looked at me with those cold, glaring eyes. For three days, he's been quick to anger, yelled at me, lashed out verbally, screamed and stormed and raged and despised. And yes, hated. He's so mad and he can't tell me why. He can't figure out for himself why he's feeling the way he's feeling and he flat out shuts down when I try to talk to him about it. But his eyes seethe anger and his tongue drips with venom, if and when he'll speak to me.
Tonight was my breaking point. The tears flowed as my heart broke into five hundred pieces for this child I love more than life itself. The pain of being on the receiving end of his hatred.... Father, please.... I know how to be the one You chose to protect Eli and love Eli and comfort and rescue and accept and understand and tolerate and explain Eli.... but I cannot be the person he looks at with those eyes filled with hatred when his anger takes him over. I've seen those eyes before...another person, another time...I survived that. But I'm definitely not strong enough to endure those eyes from my sweet child.
Once again I come back around to James, as well as remembering that You did not take the cup from your very own Son...so why should You take this cup from me? I have no right to even ask this of You. Father, it is Your Will, not mine. But I am currently not equipped to deal with the pain of this. But as always, I will trust You and know You will provide me with what I need.
It's going to be a while before I can take joy in this trial however.
Friday, August 3, 2012
New habit
Now that Eli has learned to whistle....he does.
All the time!
I feel bad asking him to stop. After all, it's taken him over five years to master the skill. But it's become an unconscious habit he has formed...just sitting there, whistling. It very well might be considered a new tic, but for now we'll just call it a habit.
Walking through the house...whistling. Playing video games...whistling. In the bathroom...whistling.
"Eli! Please stop!" is often being requested by one member of the family or another. And he does. For a little while. Then he begins to whistle again. It's so shrill and and piercing. And neverending! He just keeps whistling and whistling.
I'm sure in time the whistling will no longer hold his interest and he'll move on to something new.
Not sure if I look forward to that time...or not....
All the time!
I feel bad asking him to stop. After all, it's taken him over five years to master the skill. But it's become an unconscious habit he has formed...just sitting there, whistling. It very well might be considered a new tic, but for now we'll just call it a habit.
Walking through the house...whistling. Playing video games...whistling. In the bathroom...whistling.
Most of the time I don't even think he's aware he's doing it.
"Eli! Please stop!" is often being requested by one member of the family or another. And he does. For a little while. Then he begins to whistle again. It's so shrill and and piercing. And neverending! He just keeps whistling and whistling.
I'm sure in time the whistling will no longer hold his interest and he'll move on to something new.
Not sure if I look forward to that time...or not....
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