It's 4:30 in the morning. And I am not asleep. I've been awake since 2:30 just laying in bed. This is not good. I need to sleep. I cannot be an effective mama without adequate rest. Not to mention that I may never get over this viral crud that is now in week number three. Regardless, my body is wide awake, my brain won't stop. Perhaps writing will help clear my head.
It's been a tough transition into fall. There is nothing new about this, we go through this every year. But often times, in the midst of the hard, there is awesomeness. A little beacon of light. This year it came at The Boy's IEP meeting.
For the first time this year, we had The Boy attend his IEP meeting. This is something I've been thinking about for the past couple of years. These meetings are for and about him. What he needs, how we can all help him become the best possible version of himself. Who better to tell us than him?
So I approached his teacher (MB) with the idea. And she was completely on board. We devised a plan that we thought would work.
The Boy is not capable of attending a 1-2 hour long meeting hammering out the nitty gritty of his goals for the year, how they will be measured, how they will be reported, what accommodations and supports will be in place for each one, how much speech therapy, occupational therapy, social skills training he receives each week, when he will be in his GenEd vs SpEd classes etc, etc, etc. But we did want to introduce him to the process, let him know that this entire team of people (10 in all) are here for him. To help him and encourage him and work with him to optimize his growth and development.
But, more importantly, we wanted him to learn that his input was valuable and that we wanted to hear it. These are the seeds of self advocacy.
So we decided that he would attend the first part of the meeting. He would listen as we went around the table, each of us talking about the strengths we see in him, what we enjoy most about him. And then we would begin by asking him what are his 3 favorite things at school, what is he good at. Then asking what is hard for him. The plan was for him to be in the meeting for about 15 minutes.
I wasn't sure how this would go. Meetings are not really his thing. And with his language skills...well sometimes he answers a question and sometimes he doesn't. Sometimes his answer has nothing to do with the question. Language is a huge challenge for him.
The night before the meeting we told him about it and that MB would ask him these questions. We didn't get much of a response about the questions, he just kept talking about going to a meeting. I had no idea what to expect the next afternoon.
At 3:30 the next day we sat around a kid size table in kid size chairs, introduced ourselves to the new comers, and talked about his strengths; there are many. He appeared to not be listening, but I know better. Then MB asked him what was easy for him at school, what were his 3 favorite things.
He immediately answered "PE!"
Pause.
"And recess."
Much longer pause while thankfully everyone waited silently.
"And um, um ... and um ... LUNCH!"
And everyone chuckled just a little. Because yes, these ARE the areas where he does not struggle, or struggles the least. And, what 9 year old boy doesn't love lunch and recess? We were perhaps looking for more academic answers, but his answers were very true to him. And on topic.
MB then asked him what was difficult for him, what was hard for him to do. I'll be honest, I wasn't sure we were going to get an answer here. And if we did, I thought for sure it would be writing, or worksheets, or the generic "school work." Because even though he is making progress in these areas, it IS difficult and arduous for him. He tells me over and over when we do homework that he can't do it, it's too hard. This is what I expected.
But here is what he said: "real-a-loud and closing".
Read-a-loud
Closing
Activities where he is not actively working, but where he has to sit still and quiet, listening. And he didn't just say read-a-loud and closing. He also said "I'm not good at it".
Wow. Just, wow. I mean...wow!
That one answer told me that he is so much more self aware than any of us have given him credit for.
That boy is what my mom would call a "wiggle worm." (Is that really a term or just my mom?) I don't know if it's due to the ADHD or the autism or just being a boy, but he is constant motion. And he talks incessantly. The only time he is still and quiet at home is when he is asleep. That is it. Even laying in bed trying to go to sleep he is moving all over the bed and talking to himself. Out loud. When he watches a movie he is acting it out at the same time. He is incapable of being still and quiet.
Read-a-loud and closing. I'm not good at it.
He knows. He knows where his strengths and weaknesses are. He may not be able to articulate I can't sit still and quiet, it's impossible for me. But he can say he's not good at read-a-loud and closing. He's telling us the same thing the only way he can.
As an outsider watching this boy run and jump and tumble through his days, it would appear that he is unaware of almost everything. But I know better. I see it in his eyes. That boy misses nothing. He sees everything and he hears everything. It is all going into that amazing brain of his. And it is all being stored there. And when the time is right, it will come out.
Read-a-loud and closing. I'm not good at it.
Had anyone ever asked him before what was hardest about school? He's now telling us it's having to sit still and quiet. It not only makes read-a-loud and closing hard, but also schoolwork. When he can't move and be big, when it takes all his energy and mental capacity to sit still in a chair, there is not much left over to concentrate on reading or worksheets. His answer says so much more than just read-a-loud and closing.
He knows. He is telling us. We need to make sure we are listening.
My Side of Typical
Monday, October 26, 2015
Wednesday, October 21, 2015
Tuesday, October 13, 2015
The Mama Well
So, I wrote this post a few days ago and then didn't publish it. Because it seems like I've been writing a lot about the hard lately. And I don't want to ever give the impression that our journey is just hard all the time. Because it's not. But, as Glennon over at Momastery says life is beautiful and brutal at the same time, it's brutiful. (If you don't read Momastery, you should go take a look. Glennon is amazing.) So I'm posting this, because everyone has hard, every life is brutiful. Ours included. And I promise to write about the beautiful next time.
Some days it feels like there is not enough patience in the world, and all I want to do is completely lose my shit. And by that I mean have a Mommy Meltdown of epic proportions. Yelling, crying, flailing about, railing against the injustice of it all. I don't of course. Because I'm an adult, and a parent. And this is my life. But seriously, how much can one mama take? Can the well of mama patience, and forbearance, and just plain endurance run dry?
As I said in my last post, fall is hard for us. That's all I want to say about it here. If you want more explanations, read The Change in Fall.
So on top of the hard, last week The Boy brought home the first germs of the school year. He coughed and sniffled his way through a few days and then seemed to be getting better. But as any good child does, he shared those germs with me. And they hit me hard. Complete with sore throat, congestion, ear ache, head ache, chills. You know, the kind of thing that makes you want to just hide in bed for a few days to recover. But no, that is not the mama life.
On day number 2 of feeling like something the cat dragged in, The Boy came down with a stomach virus. And I sent the following text to my sis:
My day just went from super crappy to the Tenth Circle of Hell.
What's up?
The Boy is vomiting
OMG, NO!!!!
Because she knows what this means.
The Boy does not tolerate vomiting, to put it mildly. Unusual bodily functions freak him out. I mean, stuff is not supposed to come up from your stomach and out your mouth and nose right? And it hurts, not to mention it's just plain gross. So when The Boy starts to vomit, he panics and his fight or flight response kicks in. As I'm sure you understand, we do not want him running through the house vomiting. So we participate in what we call Greco Roman Vomiting. (If you have a weak stomach, I suggest you stop reading now.)
I have to corral him, and drag him into the smallest bathroom in our house. Since he can't run, he fights me. I try to restrain him in this small, poorly ventilated space. All while he is getting sick. And it is going every where. For what feels like an eternity (but is probably 10 minutes) we wrestle in a space that is being covered in vomit. In the end, we are sitting (or laying if it's a particularly hard round) in puddles of vomit. It has covered the floor, the walls, the sink, the toilet, and us. Our clothes are soaked, hair dripping. The stench is horrific. It's all I can do to keep from vomiting myself. I cannot imagine that the Tenth Circle of Hell is any worse than this.
As I attempt to strip and shower my whimpering child who is clinging to me, Mr. Fix it goes about cleaning and bleaching the now offensive bathroom.
After the third round (yes, three rounds of wrestling, showering, and bleaching) I did finally lose it in the shower. I was exhausted. Battered and bruised from wrestling a child who will quickly outgrow me, my head pounding with fever, my body giving out. On the floor of my shower, with the hot spray washing over me I cried. A big, ugly, snot filled cry. Some days it's just really damn hard.
Later that night as I lay on the floor in his bedroom reassuring him every time he stirred, there in the dark I wondered. What will we do in a few years when he towers over me, is stronger than me. When I can no longer contain him. How will we ever teach him to vomit in the toilet, or sink, or any contained vessel. I'll be 50 years old this year. Sleeping on the floor is no longer the fun slumber party of my youth. I'm old, I'm tired, and I'm sick. And I'm laying on the floor in the dark. How long can I continue to do this.
And that is when I realize it. That Mama Well? The one full of love and patience and understanding and determination? That one. It's infinite. It does not run dry. Ever. As long as I'm breathing I will do what it takes to help my child.
Some days it feels like there is not enough patience in the world, and all I want to do is completely lose my shit. And by that I mean have a Mommy Meltdown of epic proportions. Yelling, crying, flailing about, railing against the injustice of it all. I don't of course. Because I'm an adult, and a parent. And this is my life. But seriously, how much can one mama take? Can the well of mama patience, and forbearance, and just plain endurance run dry?
As I said in my last post, fall is hard for us. That's all I want to say about it here. If you want more explanations, read The Change in Fall.
So on top of the hard, last week The Boy brought home the first germs of the school year. He coughed and sniffled his way through a few days and then seemed to be getting better. But as any good child does, he shared those germs with me. And they hit me hard. Complete with sore throat, congestion, ear ache, head ache, chills. You know, the kind of thing that makes you want to just hide in bed for a few days to recover. But no, that is not the mama life.
On day number 2 of feeling like something the cat dragged in, The Boy came down with a stomach virus. And I sent the following text to my sis:
My day just went from super crappy to the Tenth Circle of Hell.
What's up?
The Boy is vomiting
OMG, NO!!!!
Because she knows what this means.
The Boy does not tolerate vomiting, to put it mildly. Unusual bodily functions freak him out. I mean, stuff is not supposed to come up from your stomach and out your mouth and nose right? And it hurts, not to mention it's just plain gross. So when The Boy starts to vomit, he panics and his fight or flight response kicks in. As I'm sure you understand, we do not want him running through the house vomiting. So we participate in what we call Greco Roman Vomiting. (If you have a weak stomach, I suggest you stop reading now.)
I have to corral him, and drag him into the smallest bathroom in our house. Since he can't run, he fights me. I try to restrain him in this small, poorly ventilated space. All while he is getting sick. And it is going every where. For what feels like an eternity (but is probably 10 minutes) we wrestle in a space that is being covered in vomit. In the end, we are sitting (or laying if it's a particularly hard round) in puddles of vomit. It has covered the floor, the walls, the sink, the toilet, and us. Our clothes are soaked, hair dripping. The stench is horrific. It's all I can do to keep from vomiting myself. I cannot imagine that the Tenth Circle of Hell is any worse than this.
As I attempt to strip and shower my whimpering child who is clinging to me, Mr. Fix it goes about cleaning and bleaching the now offensive bathroom.
After the third round (yes, three rounds of wrestling, showering, and bleaching) I did finally lose it in the shower. I was exhausted. Battered and bruised from wrestling a child who will quickly outgrow me, my head pounding with fever, my body giving out. On the floor of my shower, with the hot spray washing over me I cried. A big, ugly, snot filled cry. Some days it's just really damn hard.
Later that night as I lay on the floor in his bedroom reassuring him every time he stirred, there in the dark I wondered. What will we do in a few years when he towers over me, is stronger than me. When I can no longer contain him. How will we ever teach him to vomit in the toilet, or sink, or any contained vessel. I'll be 50 years old this year. Sleeping on the floor is no longer the fun slumber party of my youth. I'm old, I'm tired, and I'm sick. And I'm laying on the floor in the dark. How long can I continue to do this.
And that is when I realize it. That Mama Well? The one full of love and patience and understanding and determination? That one. It's infinite. It does not run dry. Ever. As long as I'm breathing I will do what it takes to help my child.
Thursday, October 1, 2015
The Change in Fall
I used to love September. Back to school. Crisp fall days. Leaves changing colors, swirling and drifting to the ground. Football games. Hot chocolate. Fires in the Fireplace. Boots and jackets. I. Loved. Fall. Everything fall. Even rainy, stormy, thunderous nights.
But the past several years have changed me. Fall has become brutal. Every year, September slithers into our house like a serpent, stealing the calm, leaving an enormous amount of angst in its wake. And I watch helplessly as my sweet, joyous, fun-filled boy turns into a shell of anxiety.
Every year we try to get ahead of it. We try to prepare for it. We work with him on what is coming, how to cope with it. And although it is getting better (slowly, incrementally), it is still BRUTAL. B. R. U. T. A. L. And I am out of ideas. I don't know how to make it better for him. At this point all we can do is power through. Get up every morning (hoping we've gotten some sleep), put one foot in front of the other and power through like the bulldozer he desperately loves.
Its not school. He loves school, asks to go to school all summer. I think the only reason we survive September is because of school. The consistency, the routine. The teachers, his classmates and friends. These all help, even as they too take a toll on his body. Working hard for hours at school is taxing after a summer of running, jumping, playing, swimming... Although school is not the reason for the anxiety, it does add to his inability to mitigate it.
The cause of his anxiety falls squarely on the shoulders of the change in seasons. The days getting shorter, the weather getting cooler, the clouds rolling in. Its now dark before bedtime. He does not like the dark. It seems to accentuate his already acute hearing. And every little sound triggers anxiety in his body already tense and hyper alert. I cannot tell you how many times an evening I am asked "what's that noise?" It's the refrigerator, or the dishwasher, or the dryer. It's a car outside, a jet passing overhead, the wind in the trees. It's the furnace kicking on for the first time since summer, the ice maker releasing ice cubes, Daddy working in the shop, the floor boards creaking. Noises he didn't even notice during the summer. Now they can cause a meltdown.
The other night as I was putting him to bed he kept saying "no red, no red!" I had no idea what he was talking about. What red? Red what? "Red in the window" he said. "No red in the window." Red in the window? It took a few minutes, but then we realized he'd seen brake lights from a passing car shining in his window. Add one more trigger to the ever growing list.
Fall means occasional rains, which means (at least in his mind) that there might be thunder. And thunder terrifies him. I try, unsuccessfully, to reassure him as he stands at the windows, talking to the clouds, whispering, pleading "no thunder, no thunder", his whole body stiff with tension. I cannot provide the comfort he so desperately needs.
Some days he cries for hours, literally hours. Inconsolable. Little things that haven't bothered him in years can set him off. If I leave the house he cries the whole time I'm gone. He doesn't wander more than 2 feet from me. Even though (at least from my perspective) I cannot provide comfort; he seeks me out, needs to be near me. I am housebound. And helpless. I want so badly to make it better for him. To assure him that it is alright. And nothing I do or say seems to make it any better. Just time. Time for him to get accustomed to the darkness, the coolness, the clouds.
He does eventually adjust. But in the midst of the angst, it feels like it will go on forever. So we will continue to bulldoze through September. And perhaps sometime in the near future I can fall in love with October. Pumpkin patches and chili. Trick or treating and bobbing for apples. October may become my new favorite month.
But the past several years have changed me. Fall has become brutal. Every year, September slithers into our house like a serpent, stealing the calm, leaving an enormous amount of angst in its wake. And I watch helplessly as my sweet, joyous, fun-filled boy turns into a shell of anxiety.
Every year we try to get ahead of it. We try to prepare for it. We work with him on what is coming, how to cope with it. And although it is getting better (slowly, incrementally), it is still BRUTAL. B. R. U. T. A. L. And I am out of ideas. I don't know how to make it better for him. At this point all we can do is power through. Get up every morning (hoping we've gotten some sleep), put one foot in front of the other and power through like the bulldozer he desperately loves.
Its not school. He loves school, asks to go to school all summer. I think the only reason we survive September is because of school. The consistency, the routine. The teachers, his classmates and friends. These all help, even as they too take a toll on his body. Working hard for hours at school is taxing after a summer of running, jumping, playing, swimming... Although school is not the reason for the anxiety, it does add to his inability to mitigate it.
The cause of his anxiety falls squarely on the shoulders of the change in seasons. The days getting shorter, the weather getting cooler, the clouds rolling in. Its now dark before bedtime. He does not like the dark. It seems to accentuate his already acute hearing. And every little sound triggers anxiety in his body already tense and hyper alert. I cannot tell you how many times an evening I am asked "what's that noise?" It's the refrigerator, or the dishwasher, or the dryer. It's a car outside, a jet passing overhead, the wind in the trees. It's the furnace kicking on for the first time since summer, the ice maker releasing ice cubes, Daddy working in the shop, the floor boards creaking. Noises he didn't even notice during the summer. Now they can cause a meltdown.
The other night as I was putting him to bed he kept saying "no red, no red!" I had no idea what he was talking about. What red? Red what? "Red in the window" he said. "No red in the window." Red in the window? It took a few minutes, but then we realized he'd seen brake lights from a passing car shining in his window. Add one more trigger to the ever growing list.
Fall means occasional rains, which means (at least in his mind) that there might be thunder. And thunder terrifies him. I try, unsuccessfully, to reassure him as he stands at the windows, talking to the clouds, whispering, pleading "no thunder, no thunder", his whole body stiff with tension. I cannot provide the comfort he so desperately needs.
Some days he cries for hours, literally hours. Inconsolable. Little things that haven't bothered him in years can set him off. If I leave the house he cries the whole time I'm gone. He doesn't wander more than 2 feet from me. Even though (at least from my perspective) I cannot provide comfort; he seeks me out, needs to be near me. I am housebound. And helpless. I want so badly to make it better for him. To assure him that it is alright. And nothing I do or say seems to make it any better. Just time. Time for him to get accustomed to the darkness, the coolness, the clouds.
He does eventually adjust. But in the midst of the angst, it feels like it will go on forever. So we will continue to bulldoze through September. And perhaps sometime in the near future I can fall in love with October. Pumpkin patches and chili. Trick or treating and bobbing for apples. October may become my new favorite month.
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