The Long Dark Potty Training of The Soul

It's back to potty training.

Miles has been, well, just unbearable for a while. Weeks/days whatever. He's bored he's unhappy, he's pooping every ten minutes and DEMANDING to be changed and if you don't he MELTS DOWN.

Autism parents know very well that you will do anything in your power to STOP the melt down. The only thing better than stopping the melt down is preventing the melt down.

We've done a little of this and a little of that, but the toileting issue has boiled up.

Where we ARE with potty training is, well frankly we suck as parents. It's just EASIER to deal with diapers than with underpants, soiled clothes, soiled furniture etc. Except that it's not cheaper (by any means) and we suck because HE CAN DO IT.

He uses the potty ALL DAY at school. Of course, sometimes he has accidents. In what I'd like to call some sort of freakish hell of a policy, they put the SOILED garments in ziplocs and return them. Imagine clothing that has marinated in pee and poop then done the hot bus ride home waiting for you inside your child's backpack. DELIGHTFUL I tell you. My husband does laundry. Everyone should go-fund-me for him a get away I swear, the poor man.

Some people run loads of darks, loads of lights, loads of delicates. We have an extra type of load - POOP loads. Special runs of the washer and dryer just solely for those clothing items. "I need work pants washed." "Ok but I'm running a poop load right now." That's a sort of conversation we have around here.

That's autism life.

We decided last night that maybe, just MAYBE, he wants underpants. Maybe that's why the freak out as soon as he poops. With a "typical" child, once they can tell you they've gone you know you can start working on it because they have an understanding. So I'm taking it as a sign that Miles will literally shout POOP at me, that this is a readiness signal. He doesn't like it, he wants it gone.

So this morning when we got up, I put him in underpants.

I've gone to the bathroom with him about 10 times to wipe "a dab" of poop - apparently we can't just LET IT ALL OUT AT ONCE. We've watched videos while trying to let the poop out. I've made a point to stop everything and go immediately every time. Exactly like A GOOD PARENT SHOULD.

Somebody give me a cookie.

So I hear someone peeing behind me in the half bath and that's my signal to get up and investigate.

We're gonna figure this out little boy. I promise.

The Long Dark Potty Training of The Soul

It's back to potty training.

Miles has been, well, just unbearable for a while. Weeks/days whatever. He's bored he's unhappy, he's pooping every ten minutes and DEMANDING to be changed and if you don't he MELTS DOWN.

Autism parents know very well that you will do anything in your power to STOP the melt down. The only thing better than stopping the melt down is preventing the melt down.

We've done a little of this and a little of that, but the toileting issue has boiled up.

Where we ARE with potty training is, well frankly we suck as parents. It's just EASIER to deal with diapers than with underpants, soiled clothes, soiled furniture etc. Except that it's not cheaper (by any means) and we suck because HE CAN DO IT.

He uses the potty ALL DAY at school. Of course, sometimes he has accidents. In what I'd like to call some sort of freakish hell of a policy, they put the SOILED garments in ziplocs and return them. Imagine clothing that has marinated in pee and poop then done the hot bus ride home waiting for you inside your child's backpack. DELIGHTFUL I tell you. My husband does laundry. Everyone should go-fund-me for him a get away I swear, the poor man.

Some people run loads of darks, loads of lights, loads of delicates. We have an extra type of load - POOP loads. Special runs of the washer and dryer just solely for those clothing items. "I need work pants washed." "Ok but I'm running a poop load right now." That's a sort of conversation we have around here.

That's autism life.

We decided last night that maybe, just MAYBE, he wants underpants. Maybe that's why the freak out as soon as he poops. With a "typical" child, once they can tell you they've gone you know you can start working on it because they have an understanding. So I'm taking it as a sign that Miles will literally shout POOP at me, that this is a readiness signal. He doesn't like it, he wants it gone.

So this morning when we got up, I put him in underpants.

I've gone to the bathroom with him about 10 times to wipe "a dab" of poop - apparently we can't just LET IT ALL OUT AT ONCE. We've watched videos while trying to let the poop out. I've made a point to stop everything and go immediately every time. Exactly like A GOOD PARENT SHOULD.

Somebody give me a cookie.

So I hear someone peeing behind me in the half bath and that's my signal to get up and investigate.

We're gonna figure this out little boy. I promise.

Invisible Children

Everyone hopes that their children will do/be/achieve greatness in the world. I think that's normal. I mean, we've always said "We just want them to be happy" and that's quite true. But when they hand you that baby after hours of blood, sweat and agony, they are also handing you a clean slate of possibility in the form of another human. This child, this mewling pink thing could be anything. They might invent the cure for cancer. They might be a great poet. They might be the world's greatest car thief. You don't know what they will be - but the possibilities are endless.

They are endless until you learn your child has a disability for which there is no cure, no end, and no meaningful improvement from. Then you learn to set your sights lower, reduce the scope of your dreams, and be happy for what you have. We used to say that Charlie would be a pilot, when he was a toddler. He LOVED planes - still does. He loved them the way my brother Matt loved trains. We'd laugh, "Charlie will fly helicopters. Charlie will fly planes one day." It was a little meaningless game all parents play. It was heartful, and happy and silly. It was also dead wrong.

Charlie will never fly a plane. Unless it's some sort of death plane - he'd be fine at flying at that.

My twin boys will likely live our their lives with me and their father and some day have to live in some sort of a home unless their siblings have the means to afford some one to help care for them in their own home. They won't write literature, fly planes, cure disease or create anything lasting on this earth. But they will have been loved, and safe, and happy. That's as good as I can ever hope for. If we get more than that on any day, I will count it good fortune and be grateful.

I won't give up hope for improved treatments or therapies for them, but I also won't live my life waiting for them. I accept that this might be it. They might be EXACTLY like this until the day I die. That's ok if that's how it is.

They're invisible on the earth. I see them, but the world really won't ever see them or regard them. There won't be people who remember them fondly except our immediate family, no people who look up to them, or regard them as peers and comrades in arms. They're singular, each alone even as they are together.

Imagine my surprise when last night we reviewed papers from school and this was in Miles work.

It says:
Dear President Carter
This month we are studying about peacemakers. We were taught about how you were a peacemaker.
I want to thank you for your work in domestic and foreign affairs.. You gave people hope.
Sincerely
Miles McNeal

His class all wrote letters, and they were taken to former President Carter...and READ TO HIM.

Now, I'm positive he had some help writing the letter as I can't recall the last time Miles brought up DOMESTIC AND FOREIGN AFFAIRS.

But here's the thing.

Jimmy Carter heard a letter written by my Miles. Jimmy Carter, former president, Nobel Peace Prize Winner, heard a letter written by Miles.

I literally burst into tears when I learned this. My invisible child was heard by him. He probably won't remember, it was probably one of 50 letters from Special kids he heard that day. That doesn't matter.

One of the most important figures of the late 20th century (whether you life him or not) heard of my child. It is something I would never have dreamed was possible. It makes me happier than I can ever explain, unless you have a disabled child yourself. In that case, I know you understand.
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Invisible Children

Everyone hopes that their children will do/be/achieve greatness in the world. I think that's normal. I mean, we've always said "We just want them to be happy" and that's quite true. But when they hand you that baby after hours of blood, sweat and agony, they are also handing you a clean slate of possibility in the form of another human. This child, this mewling pink thing could be anything. They might invent the cure for cancer. They might be a great poet. They might be the world's greatest car thief. You don't know what they will be - but the possibilities are endless.

They are endless until you learn your child has a disability for which there is no cure, no end, and no meaningful improvement from. Then you learn to set your sights lower, reduce the scope of your dreams, and be happy for what you have. We used to say that Charlie would be a pilot, when he was a toddler. He LOVED planes - still does. He loved them the way my brother Matt loved trains. We'd laugh, "Charlie will fly helicopters. Charlie will fly planes one day." It was a little meaningless game all parents play. It was heartful, and happy and silly. It was also dead wrong.

Charlie will never fly a plane. Unless it's some sort of death plane - he'd be fine at flying at that.

My twin boys will likely live our their lives with me and their father and some day have to live in some sort of a home unless their siblings have the means to afford some one to help care for them in their own home. They won't write literature, fly planes, cure disease or create anything lasting on this earth. But they will have been loved, and safe, and happy. That's as good as I can ever hope for. If we get more than that on any day, I will count it good fortune and be grateful.

I won't give up hope for improved treatments or therapies for them, but I also won't live my life waiting for them. I accept that this might be it. They might be EXACTLY like this until the day I die. That's ok if that's how it is.

They're invisible on the earth. I see them, but the world really won't ever see them or regard them. There won't be people who remember them fondly except our immediate family, no people who look up to them, or regard them as peers and comrades in arms. They're singular, each alone even as they are together.

Imagine my surprise when last night we reviewed papers from school and this was in Miles work.

It says:
Dear President Carter
This month we are studying about peacemakers. We were taught about how you were a peacemaker.
I want to thank you for your work in domestic and foreign affairs.. You gave people hope.
Sincerely
Miles McNeal

His class all wrote letters, and they were taken to former President Carter...and READ TO HIM.

Now, I'm positive he had some help writing the letter as I can't recall the last time Miles brought up DOMESTIC AND FOREIGN AFFAIRS.

But here's the thing.

Jimmy Carter heard a letter written by my Miles. Jimmy Carter, former president, Nobel Peace Prize Winner, heard a letter written by Miles.

I literally burst into tears when I learned this. My invisible child was heard by him. He probably won't remember, it was probably one of 50 letters from Special kids he heard that day. That doesn't matter.

One of the most important figures of the late 20th century (whether you life him or not) heard of my child. It is something I would never have dreamed was possible. It makes me happier than I can ever explain, unless you have a disabled child yourself. In that case, I know you understand.
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Double The Birthdays

My big twin boys turned nine this week. With their sister having a birthday just ten days earlier there was a lot of Chuck E Cheese and kid related fun to be be had two weekends in a row. Watching them turn nine was a little sad, because chronology doesn't not tell you anything about how mature they are. It's just how many years they've been alive. 

But despite a bit of motherly wistfulness, their birthday was greeted with kisses and excitement and joy. Birthdays are happy days. Even if they don't quite get WHAT a birthday is, they do understand that when we say it's birthdays there will be presents and cake.

They don't like cake but whatever.

One of the bus drivers drew the Minion card as a gift and there were books and gifts that made them both smile and giggle. Plus there were balloons. Who doesn't like balloons?

Sometimes exciting things happen, as we celebrate the three birthdays in April. They're things you might not even notice - but a little boy painting his name at the painting activity is a big deal at our house.

So Happy Birthday Miles and Charlie. I hope your day was special, and you always know that we love you. 

Even if you are never the age you actually are.

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Double The Birthdays

My big twin boys turned nine this week. With their sister having a birthday just ten days earlier there was a lot of Chuck E Cheese and kid related fun to be be had two weekends in a row. Watching them turn nine was a little sad, because chronology doesn't not tell you anything about how mature they are. It's just how many years they've been alive. 

But despite a bit of motherly wistfulness, their birthday was greeted with kisses and excitement and joy. Birthdays are happy days. Even if they don't quite get WHAT a birthday is, they do understand that when we say it's birthdays there will be presents and cake.

They don't like cake but whatever.

One of the bus drivers drew the Minion card as a gift and there were books and gifts that made them both smile and giggle. Plus there were balloons. Who doesn't like balloons?

Sometimes exciting things happen, as we celebrate the three birthdays in April. They're things you might not even notice - but a little boy painting his name at the painting activity is a big deal at our house.

So Happy Birthday Miles and Charlie. I hope your day was special, and you always know that we love you. 

Even if you are never the age you actually are.

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He Has Christmas Wishes

Something amazing happened a couple of days ago and I'm still reeling from it. I'm not sure you other parents can fathom this but I have never known really what my twins want for Christmas. I have a general idea of things they "like" but, you never really know.
Your neuro typical children get dreamy eyed and try to tell you all the reasons they want this or that or the other thing. But, my sweet twins open what they are given and often just wait for something else to open. Opening is fun on Christmas but usually only one or two things catches their eye.

And I've never had a Christmas list, or been able to have that "So tell Mommy what you want for Christmas" talk with them.

Until NOW.

He is getting every damn thing on this list by God.

We already have the PlayStation. I am guessing he wants to play. So I told my oldest son we're going to teach him how to play.

I sat and cried and cried when I saw this. He has a Christmas list. For the first time in his life.

I think it's amazing.
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He Has Christmas Wishes

Something amazing happened a couple of days ago and I'm still reeling from it. I'm not sure you other parents can fathom this but I have never known really what my twins want for Christmas. I have a general idea of things they "like" but, you never really know.
Your neuro typical children get dreamy eyed and try to tell you all the reasons they want this or that or the other thing. But, my sweet twins open what they are given and often just wait for something else to open. Opening is fun on Christmas but usually only one or two things catches their eye.

And I've never had a Christmas list, or been able to have that "So tell Mommy what you want for Christmas" talk with them.

Until NOW.

He is getting every damn thing on this list by God.

We already have the PlayStation. I am guessing he wants to play. So I told my oldest son we're going to teach him how to play.

I sat and cried and cried when I saw this. He has a Christmas list. For the first time in his life.

I think it's amazing.
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