...but I Don't Know Where To Start

There's a lot of work to do to get ready for a funeral. There's the funeral work. My brother did that. He asked me a lot of questions, getting my opinion. Luckily, being raised by the same mother we're in sync with so many things that it wasn't a battle or an ordeal. He'd call and say "I'm thinking this" and I was so thankful he'd thought of something I didn't find any reason to find fault with it.

I'm grateful for that. I know some people have to deal with their grief in addition to sudden battles over burial or cremation, viewing or not, what prayers what songs, what what what what? It becomes a power struggle. Maybe it's an ego struggle as everyone pushes their own agenda. I don't know because it wasn't my experience. My brother had good ideas as we walked toward this new experience together and I was grateful for them.

On my end there was the travel. There is the travel prep and then there is the travel itself. I'm not sure which is more tiring.

We acquired dresses and suits and ties, and checked the tires. Preparations were made of various sorts as we got ready to head north.But most importantly, we had to tell our kids.

Everyone knew that Grandma was very sick and wouldn't live long. I suppose that's the reason no one questioned this sudden flurry of shopping. But my brother and I had agreed to tell our children at about the same time before we did a general announcement in the land of social media and as the sun set I got his message that he had told his children.

My turn.

We were sitting in Chilli's having a typical sub-par meal and so at one point I shared the information with them. I felt numb as I said the words. "Grandma died today."

They stared at me with blank faces, but the calm might have been more disturbing than a huge outburst. They acknowledged what I had said, and seemed sad but at the same time I don't know what I expected. A friend of mine recently said "Dammit feel my shit the way I want you to" as a joke. But that's how I felt. I wanted someone else to feel as gutted as me and I felt guilty for wanting it to be my children, I guess I just wanted to not feel so alone in this pain. I worried and worried about how they would take it. Then they took it with sadness but calm and I felt like they didn't seem to care as much as I wanted them to.

Then I felt bad for feeling like that.

I remember when my Grandpa died, with whom was I was very close. My mom was her Daddy's girl and by the same token so was I. When he died I was devastated. I remember crying and crying when my daddy told me. But then after that I don't remember really crying again in the immediate days after. I remember getting a new dress at Newkirks which was the best shop in town. I remember being very impressed by this dress.

I remember the spectacle of it all being actually quite fun, so many people and so much visiting plus all the food. It wasn't bad. It was happy because of all the love and family being around.

I suppose that then it shouldn't have surprised me that despite my own sadness, my children found fun and activity on the way there.

There was coloring and laughing at dinner on our stop and I couldn't any fault with that at all.

Julia made a treasure map to get to the funeral. All maps are treasure maps it seems. I can't find any fault with that either.

We crossed rivers and states and traveled north to the land where our people live and our people have died. It was a long drive and it was past bed time when we rolled in.

Nickajack is always one of my favorite views on the trip. At least the trip is scenic.


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...but I Don't Know Where To Start

There's a lot of work to do to get ready for a funeral. There's the funeral work. My brother did that. He asked me a lot of questions, getting my opinion. Luckily, being raised by the same mother we're in sync with so many things that it wasn't a battle or an ordeal. He'd call and say "I'm thinking this" and I was so thankful he'd thought of something I didn't find any reason to find fault with it.

I'm grateful for that. I know some people have to deal with their grief in addition to sudden battles over burial or cremation, viewing or not, what prayers what songs, what what what what? It becomes a power struggle. Maybe it's an ego struggle as everyone pushes their own agenda. I don't know because it wasn't my experience. My brother had good ideas as we walked toward this new experience together and I was grateful for them.

On my end there was the travel. There is the travel prep and then there is the travel itself. I'm not sure which is more tiring.

We acquired dresses and suits and ties, and checked the tires. Preparations were made of various sorts as we got ready to head north.But most importantly, we had to tell our kids.

Everyone knew that Grandma was very sick and wouldn't live long. I suppose that's the reason no one questioned this sudden flurry of shopping. But my brother and I had agreed to tell our children at about the same time before we did a general announcement in the land of social media and as the sun set I got his message that he had told his children.

My turn.

We were sitting in Chilli's having a typical sub-par meal and so at one point I shared the information with them. I felt numb as I said the words. "Grandma died today."

They stared at me with blank faces, but the calm might have been more disturbing than a huge outburst. They acknowledged what I had said, and seemed sad but at the same time I don't know what I expected. A friend of mine recently said "Dammit feel my shit the way I want you to" as a joke. But that's how I felt. I wanted someone else to feel as gutted as me and I felt guilty for wanting it to be my children, I guess I just wanted to not feel so alone in this pain. I worried and worried about how they would take it. Then they took it with sadness but calm and I felt like they didn't seem to care as much as I wanted them to.

Then I felt bad for feeling like that.

I remember when my Grandpa died, with whom was I was very close. My mom was her Daddy's girl and by the same token so was I. When he died I was devastated. I remember crying and crying when my daddy told me. But then after that I don't remember really crying again in the immediate days after. I remember getting a new dress at Newkirks which was the best shop in town. I remember being very impressed by this dress.

I remember the spectacle of it all being actually quite fun, so many people and so much visiting plus all the food. It wasn't bad. It was happy because of all the love and family being around.

I suppose that then it shouldn't have surprised me that despite my own sadness, my children found fun and activity on the way there.

There was coloring and laughing at dinner on our stop and I couldn't any fault with that at all.

Julia made a treasure map to get to the funeral. All maps are treasure maps it seems. I can't find any fault with that either.

We crossed rivers and states and traveled north to the land where our people live and our people have died. It was a long drive and it was past bed time when we rolled in.

Nickajack is always one of my favorite views on the trip. At least the trip is scenic.


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I Made These Humans

We were watching The Goldbergs last night, which is one of my favorite new shows btw, and Beverly (the mom) gets a tshirt made with her kids faces on it. She loudly declares "I made these people, I made them with my own body." She's proud. BEHOLD THE WONDER OF HER FAMILY.

I laughed. But I get it. I feel like that every day. Look at these toes I made. Look at this smile, I made this person, LOOK AT THOSE FEET. Even if it's just biology and hey even one cell organisms can reproduce, I bet if they were sentient they'd say "OH MY GOSH LOOK WHAT I JUST SPLIT INTO ! NOW THERE ARE TWO OF ME !"

I feel even more amazed this week after my pap smear. I've known for years that I had a bicornuate uterus, meaning it was heart shaped and has a bit of a septum. It's not like an egg shaped perfectly for growing humans. When I was pregnant with Julia, my doctor was VERY concerned about my ability to carry her to term and was shocked I had ever carried to term much less twins.

I saw him again this week for my annual (ooops which had been over two years) and he was looking through my chart, and told me that when we did my ablation, he had noted that my uterus has a very pronounced septum. His exact words were "No medical book would say you could carry children at all, it's amazing that you have four children. It should be impossible."

Behold, the wonder of my family. I made them with my own body.


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I Made These Humans

We were watching The Goldbergs last night, which is one of my favorite new shows btw, and Beverly (the mom) gets a tshirt made with her kids faces on it. She loudly declares "I made these people, I made them with my own body." She's proud. BEHOLD THE WONDER OF HER FAMILY.

I laughed. But I get it. I feel like that every day. Look at these toes I made. Look at this smile, I made this person, LOOK AT THOSE FEET. Even if it's just biology and hey even one cell organisms can reproduce, I bet if they were sentient they'd say "OH MY GOSH LOOK WHAT I JUST SPLIT INTO ! NOW THERE ARE TWO OF ME !"

I feel even more amazed this week after my pap smear. I've known for years that I had a bicornuate uterus, meaning it was heart shaped and has a bit of a septum. It's not like an egg shaped perfectly for growing humans. When I was pregnant with Julia, my doctor was VERY concerned about my ability to carry her to term and was shocked I had ever carried to term much less twins.

I saw him again this week for my annual (ooops which had been over two years) and he was looking through my chart, and told me that when we did my ablation, he had noted that my uterus has a very pronounced septum. His exact words were "No medical book would say you could carry children at all, it's amazing that you have four children. It should be impossible."

Behold, the wonder of my family. I made them with my own body.


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It Was International Night

Middle School brings new things, such as the International Night Fashion Show and Cake Walk. To say that this even was "under billed" might be a huge over statement. The boy and I went, and the first clue was that the parking lot was packed.

The entire center of the school was ringed with tables themed to various countries, with crafts, and foods that were free, or a nominal fee to try.

I love school events. Wandering the halls, watching all the kids act crazy, or behave quite well. I love how they're all learning and growing, these boys that I've watched since they were 5 and 6.

And it's probably ego but it makes me feel good to do this simple stuff with him, just to watch his wonder and excitement. Above, he's making a paper flower for his little sister. The girl manning the station? No idea how to make them. Luckily, I was a girl scout and making paper flowers was a requirement :) .

While we wandered and tasted and made crafts, my mind went to a friend of mine who just died.

She was my friend while I was trying to get pregnant. She was my friend who was the self appointed expert on all things motherhood. A lot of things I find myself gravitating to as important, are things she used to say over and over. Her kids were her WORLD. SCHOOL IS THEIR JOB she would say. YOU HAVE TO BE INVOLVED IN EVERYTHING THEY DO, she would say. She helped me find the best pediatrician.

I didn't think she was a perfect mom, but I thought she was a good mom. As a friend, she was definitely someone whose opinion and values mattered to me. I listened to her, and believed in so much of what she said.

So there I was at international night, tasting chicken satay, and laughing as my son played the various instruments with his friends, blinking back my tears.

In the course of 12 years, 11 I have been gone from there, my friend drank herself to death. Her alcoholism existed even when I knew her, but I never perceived it. She was good at pretending she didn't have a problem - for a while.

I find it unthinkable, that someone whose world revolved around her kids, could change into someone whose world revolved around booze. But that's how powerful it is. She couldn't even stop for all the things she believed in, all the things she loved.

I know that the bubbly, bossy girl Michele and I were friends with hasn't existed in a long time. She changed as the demon took hold of her and turned her into someone else. So I guess I can't mourn the person I knew suddenly dying, as that person hasn't been around in years and years.

But I regret the loss to her children, of the woman I knew. Do they even remember her, and her passion for them? Do they know how they were EVERYTHING to her? The mom who did crafts and participated at school, vs. being a sick drunk prone to rage - do they remember? God I hope they do. I do.

I mourn the loss of hope, of future, for her. I regret the missed chances, the grandchildren, the firsts she won't get to see now. I mourn the girl who I knew, being lost in the bottom of a bottle.

This is how I will remember her. Round cheeked, smiling, and with bigger hair than was actually appropriate for the decade.  I saw another picture of her online, thin, bony, sharp featured. I don't know that girl.This is the girl I know.

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It Was International Night

Middle School brings new things, such as the International Night Fashion Show and Cake Walk. To say that this even was "under billed" might be a huge over statement. The boy and I went, and the first clue was that the parking lot was packed.

The entire center of the school was ringed with tables themed to various countries, with crafts, and foods that were free, or a nominal fee to try.

I love school events. Wandering the halls, watching all the kids act crazy, or behave quite well. I love how they're all learning and growing, these boys that I've watched since they were 5 and 6.

And it's probably ego but it makes me feel good to do this simple stuff with him, just to watch his wonder and excitement. Above, he's making a paper flower for his little sister. The girl manning the station? No idea how to make them. Luckily, I was a girl scout and making paper flowers was a requirement :) .

While we wandered and tasted and made crafts, my mind went to a friend of mine who just died.

She was my friend while I was trying to get pregnant. She was my friend who was the self appointed expert on all things motherhood. A lot of things I find myself gravitating to as important, are things she used to say over and over. Her kids were her WORLD. SCHOOL IS THEIR JOB she would say. YOU HAVE TO BE INVOLVED IN EVERYTHING THEY DO, she would say. She helped me find the best pediatrician.

I didn't think she was a perfect mom, but I thought she was a good mom. As a friend, she was definitely someone whose opinion and values mattered to me. I listened to her, and believed in so much of what she said.

So there I was at international night, tasting chicken satay, and laughing as my son played the various instruments with his friends, blinking back my tears.

In the course of 12 years, 11 I have been gone from there, my friend drank herself to death. Her alcoholism existed even when I knew her, but I never perceived it. She was good at pretending she didn't have a problem - for a while.

I find it unthinkable, that someone whose world revolved around her kids, could change into someone whose world revolved around booze. But that's how powerful it is. She couldn't even stop for all the things she believed in, all the things she loved.

I know that the bubbly, bossy girl Michele and I were friends with hasn't existed in a long time. She changed as the demon took hold of her and turned her into someone else. So I guess I can't mourn the person I knew suddenly dying, as that person hasn't been around in years and years.

But I regret the loss to her children, of the woman I knew. Do they even remember her, and her passion for them? Do they know how they were EVERYTHING to her? The mom who did crafts and participated at school, vs. being a sick drunk prone to rage - do they remember? God I hope they do. I do.

I mourn the loss of hope, of future, for her. I regret the missed chances, the grandchildren, the firsts she won't get to see now. I mourn the girl who I knew, being lost in the bottom of a bottle.

This is how I will remember her. Round cheeked, smiling, and with bigger hair than was actually appropriate for the decade.  I saw another picture of her online, thin, bony, sharp featured. I don't know that girl.This is the girl I know.

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The More Things Change

Weekend mornings have started "about" the same way every weekend as long as my memory goes. I wake up to the sound of the twins needing something. If there was a baby in the house, it was the sound of a baby needing something. Sometimes, just "sometimes" I get up before anyone else, and there is quiet before people start summoning me to meet their needs.

The past two mornings though, I've awoken to a muffled noise, talking, murmuring and just - rustling about.

I walk down the hall, and Miles is on the computer watching Sesame Street of playing Sesame Street online games, and Charlie is draped across a chair, watching Thomas. They're both content, relaxed, and no one is screaming.

They've learned, at the age of ten, that they can wake up and not scream & carry on for attention. They can in fact, and have been known to, come in to my room and say "GET UP PLEASE". But suddenly they're just content hanging out, they seem to be seeking their own quiet time, comfortable knowing it won't be long until I stumble down the hall wondering what I am hearing.

A couple of hours in the pool yesterday and more planned for today, as it's 100 AGAIN, I had expected everyone to sleep in and enjoy the rest myself. But they were in the computer room again, comfortably entertaining themselves.

It feels like, as summer closes with one last blast of heat from her oven, that we've hit a change that's positive. I am as excited by this silly independence the twins are showing, as I am of Julia being brave enough to jump into the pool, or Louis really starting to learn to swim. (Yes he's late I know).

Comfort comes from strange places.

But at least it comes.

At least it comes.
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The More Things Change

Weekend mornings have started "about" the same way every weekend as long as my memory goes. I wake up to the sound of the twins needing something. If there was a baby in the house, it was the sound of a baby needing something. Sometimes, just "sometimes" I get up before anyone else, and there is quiet before people start summoning me to meet their needs.

The past two mornings though, I've awoken to a muffled noise, talking, murmuring and just - rustling about.

I walk down the hall, and Miles is on the computer watching Sesame Street of playing Sesame Street online games, and Charlie is draped across a chair, watching Thomas. They're both content, relaxed, and no one is screaming.

They've learned, at the age of ten, that they can wake up and not scream & carry on for attention. They can in fact, and have been known to, come in to my room and say "GET UP PLEASE". But suddenly they're just content hanging out, they seem to be seeking their own quiet time, comfortable knowing it won't be long until I stumble down the hall wondering what I am hearing.

A couple of hours in the pool yesterday and more planned for today, as it's 100 AGAIN, I had expected everyone to sleep in and enjoy the rest myself. But they were in the computer room again, comfortably entertaining themselves.

It feels like, as summer closes with one last blast of heat from her oven, that we've hit a change that's positive. I am as excited by this silly independence the twins are showing, as I am of Julia being brave enough to jump into the pool, or Louis really starting to learn to swim. (Yes he's late I know).

Comfort comes from strange places.

But at least it comes.

At least it comes.
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The Things You Learn

Most people probably heard the story about the mom of the autistic girl who tried to kill them both, I've been mulling it around in my mind, because of the desperation, depression and absolutely being overwhelmed with your world that the woman wrote about on her blog 

If you aren't a parent of an autistic child, I will never be able to explain it to you in words you understand. In exactly the same way, if you were not a parent, I could NEVER fully get you to understand what it means to be one. I can explain it, and you could think you understood it, but you wouldn't get it. Not really. That isn't because you aren't capable of it, it's because it's meaning isn't visited upon you until it has you in it's grasp - and by then, it has you.

The problem is sometimes, that we write and try to show you the good things. We want you to see how we're coping, and how things are coming along, what our strategies are, our victories. I don't know why. Maybe we want to show you we're doing ok.

My heart breaks reading through her blog. I see someone going LOOK I HAVE A PLAN LOOK I AM DEALING WITH THIS. And she's trying really hard, so super fucking great kudos to her. Because that's awesome. But we also get to be human, we special needs parents. We get to be angry, and we have to know that just like the "typical" parents of this earth, no matter how hard we try our lives are going to go off kilter. We can't plan away our autism, we can't say if we do XYZ everything is going to be better.

Nothing hinges on ONE thing. Not in anyone's life. Right now I have a 9 year old boy in a pullup saying "Did I poop? Did I poop? Did I Poop?" over and over and over. He did not. I am not going to ever let ONE thing define how I proceed. My world is bigger than one failure or one success. My world is multifaceted.

I was thinking, as I'm waiting for the Beta Test of Elder Scrolls Online to download, that being a parent of a special needs child pushes your character in ways you didn't know you could be challenged. It's definitely not all good.

Under the category of NOT GOOD

• How hard you can cry
• How lost and alone you can feel
• How people stare at you and your child
• How people don't know what to say and are awkward around you when they find out
• How no one can babysit or will (Emma excluded bcse she is awesome)
• How you feel guilty even thinking about asking someone to babysit
• How no one understands
• How you want to cut the next person who brings up Temple Grandin 
• How you want to cut the next person who says they are the most brilliant people on earth
• How people tell you which diet/pill/quack therapy they've done
• How tired you are of Rain Man
• How tired you can be
• How emotionally empty you can feel
• How disappointed in the world you can be
• How your dreams can be killed
• How much guilt you can feel (is this my fault?)

Under the category of GOOD

• What love is.
• What joy actually is.
• How strong you can be.
• That it's ok to cry. Yes even that hard.
• Who actually loves and cares about you.
• That it's not only ok to be selfish sometimes, it's important.
• That small things can be amazing.
• That nothing is to be taken for granted.
• How well you can function tired.
• That other people actually have it worse than you.
• How to appreciate what you actually have.
• That your dreams weren't killed, they were just changed.
• That you define your own world, and most people don't know that.

I sat in a meeting once, learning about waivers and other government things, and listened to parent talk in desperation about their children, and what would happen to their children when they died. One woman said she had realized she was going to have to simply kill her child, then herself, because no one would take her child when she died. She was in her late 50s, and was completely serious.

This mom in Michigan, who snapped/broke/gave up, wasn't so alone or without resource as that lady. But her desperation was just as real. She made a choice that for whatever reason seemed right. I can't imagine what it was that made it seem right. I had to quit reading her blog, because I see in the retrospect of her words the building desperation and tension, despite the smileys and gifs and GET IT DONE attitude.

When I look at my first list, I remember to look at the second. I want all of my days, and I want my children to have all of theirs. Even on my blackest day, I never walked into that place where such a thing was a good idea. I think I'm lucky.

I think that place lurks for all of us, and we have to find the path to stay out of it. 

Every single day.

 

The Things You Learn

Most people probably heard the story about the mom of the autistic girl who tried to kill them both, I've been mulling it around in my mind, because of the desperation, depression and absolutely being overwhelmed with your world that the woman wrote about on her blog 

If you aren't a parent of an autistic child, I will never be able to explain it to you in words you understand. In exactly the same way, if you were not a parent, I could NEVER fully get you to understand what it means to be one. I can explain it, and you could think you understood it, but you wouldn't get it. Not really. That isn't because you aren't capable of it, it's because it's meaning isn't visited upon you until it has you in it's grasp - and by then, it has you.

The problem is sometimes, that we write and try to show you the good things. We want you to see how we're coping, and how things are coming along, what our strategies are, our victories. I don't know why. Maybe we want to show you we're doing ok.

My heart breaks reading through her blog. I see someone going LOOK I HAVE A PLAN LOOK I AM DEALING WITH THIS. And she's trying really hard, so super fucking great kudos to her. Because that's awesome. But we also get to be human, we special needs parents. We get to be angry, and we have to know that just like the "typical" parents of this earth, no matter how hard we try our lives are going to go off kilter. We can't plan away our autism, we can't say if we do XYZ everything is going to be better.

Nothing hinges on ONE thing. Not in anyone's life. Right now I have a 9 year old boy in a pullup saying "Did I poop? Did I poop? Did I Poop?" over and over and over. He did not. I am not going to ever let ONE thing define how I proceed. My world is bigger than one failure or one success. My world is multifaceted.

I was thinking, as I'm waiting for the Beta Test of Elder Scrolls Online to download, that being a parent of a special needs child pushes your character in ways you didn't know you could be challenged. It's definitely not all good.

Under the category of NOT GOOD

• How hard you can cry
• How lost and alone you can feel
• How people stare at you and your child
• How people don't know what to say and are awkward around you when they find out
• How no one can babysit or will (Emma excluded bcse she is awesome)
• How you feel guilty even thinking about asking someone to babysit
• How no one understands
• How you want to cut the next person who brings up Temple Grandin 
• How you want to cut the next person who says they are the most brilliant people on earth
• How people tell you which diet/pill/quack therapy they've done
• How tired you are of Rain Man
• How tired you can be
• How emotionally empty you can feel
• How disappointed in the world you can be
• How your dreams can be killed
• How much guilt you can feel (is this my fault?)

Under the category of GOOD

• What love is.
• What joy actually is.
• How strong you can be.
• That it's ok to cry. Yes even that hard.
• Who actually loves and cares about you.
• That it's not only ok to be selfish sometimes, it's important.
• That small things can be amazing.
• That nothing is to be taken for granted.
• How well you can function tired.
• That other people actually have it worse than you.
• How to appreciate what you actually have.
• That your dreams weren't killed, they were just changed.
• That you define your own world, and most people don't know that.

I sat in a meeting once, learning about waivers and other government things, and listened to parent talk in desperation about their children, and what would happen to their children when they died. One woman said she had realized she was going to have to simply kill her child, then herself, because no one would take her child when she died. She was in her late 50s, and was completely serious.

This mom in Michigan, who snapped/broke/gave up, wasn't so alone or without resource as that lady. But her desperation was just as real. She made a choice that for whatever reason seemed right. I can't imagine what it was that made it seem right. I had to quit reading her blog, because I see in the retrospect of her words the building desperation and tension, despite the smileys and gifs and GET IT DONE attitude.

When I look at my first list, I remember to look at the second. I want all of my days, and I want my children to have all of theirs. Even on my blackest day, I never walked into that place where such a thing was a good idea. I think I'm lucky.

I think that place lurks for all of us, and we have to find the path to stay out of it. 

Every single day.

 

The Nadirs of Autism

A perfect storm started on Friday night. We hadn't been any where all week mostly really because of my foot. The kids were home for Spring Break and school is one of those routines that is sacred to the twins. They LOVE it. So a week without it already put us at a bad place. Add to that, we decided that my foot being weird (numbness) meant we really needed me to stay off of it and be good for the weekend.

Thus, two more days at home. By Sunday all four of them had gone stir crazy.

On Sunday it rained. It started out pretty mellow, Charlie got me up very early and we sat up and waited for the lawn care people to show up and do their thing. Eventually I drug the rest of the little humans out of bed and figured, mellow day is going well.

At breakfast the wheels came off slightly. Everyone was a bit discombobulated but it didn't seem TOO bad. However as the day progressed and our inactivity apparently became more apparent, the twins patience with this waned. As did Julias.

Charlie's method of coping was thrashing and screaming.  Eventually he just gave it up that he needed a nap and went to his room and slept off the crazy.

Miles however decided to engage in NOTHING WILL MAKE ME HAPPY NO MATTER WHAT YOU DO. I tried getting the four of them to play Candyland with me. The big boy politlely declined (ok he's ten) and the girl wouldn't sit still or pay attention, Charlie wouldn't pay attention or try. Miles understood how to play. This was his twenty minutes of good behavior for the day. He played, was Candyland grand champion.
The rest of the day was spent fighting with Charlie, fighting with Julia, fighting over toys, screaming and sobbing randomly, and making this noise that sounds like a cat in heat. The noise infuriates me and goes RIGHT THROUGH ME. He knows this. So he keeps it up.

In fairness to me, I lasted though one and a half kiddie movies before I started yelling and losing my cool. Seriously, what is it that I can't sit and have my foot up and let me kids watch movies in peace? I can't. Because watching any kind of TV is some sort of drama.

Autism is so unfair. It makes the smallest of things impossible sometimes. It infuriates me. I shouldn't have to sit and endure two children screaming for no reason. My other children shouldn't have to endure two children screaming for no reason.

And more importantly, my children screaming shouldn't be experiencing whatever the hell it is that is making them scream.

That's the thing though. You don't know what's wrong. IT COULD BE NOTHING. THEY MIGHT LIKE THE SOUND. It's like some sick joke, see that child sobbing hysterically? Nothing wrong with him. Just having a sensory moment.

As a mother, it's devastating. My child is hysterical. And I cannot fix it. There should be a fix. I should be able to hold them or sing to them or get them candy and there just IS NO FIX.

I ended up taking a shower and standing in the shower and sobbing. Afterward apologizing to Miles for yelling at him, and for his autism. I know I didn't "do" it, but still, I made him. Any mother with a child that has a congential problem will probably tell you, the guilt of that eats at you every minute of every day. "What did I do wrong?" Probably nothing. Or I passed on bad genes and I couldn't help it.

Sunday ended with early bed times and Monday school started back up. Life is normal again.

I'll have another day like that, some day sooner rather than later. And I'll cry a lot.

Because it's all I can do.

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The Nadirs of Autism

A perfect storm started on Friday night. We hadn't been any where all week mostly really because of my foot. The kids were home for Spring Break and school is one of those routines that is sacred to the twins. They LOVE it. So a week without it already put us at a bad place. Add to that, we decided that my foot being weird (numbness) meant we really needed me to stay off of it and be good for the weekend.

Thus, two more days at home. By Sunday all four of them had gone stir crazy.

On Sunday it rained. It started out pretty mellow, Charlie got me up very early and we sat up and waited for the lawn care people to show up and do their thing. Eventually I drug the rest of the little humans out of bed and figured, mellow day is going well.

At breakfast the wheels came off slightly. Everyone was a bit discombobulated but it didn't seem TOO bad. However as the day progressed and our inactivity apparently became more apparent, the twins patience with this waned. As did Julias.

Charlie's method of coping was thrashing and screaming.  Eventually he just gave it up that he needed a nap and went to his room and slept off the crazy.

Miles however decided to engage in NOTHING WILL MAKE ME HAPPY NO MATTER WHAT YOU DO. I tried getting the four of them to play Candyland with me. The big boy politlely declined (ok he's ten) and the girl wouldn't sit still or pay attention, Charlie wouldn't pay attention or try. Miles understood how to play. This was his twenty minutes of good behavior for the day. He played, was Candyland grand champion.
The rest of the day was spent fighting with Charlie, fighting with Julia, fighting over toys, screaming and sobbing randomly, and making this noise that sounds like a cat in heat. The noise infuriates me and goes RIGHT THROUGH ME. He knows this. So he keeps it up.

In fairness to me, I lasted though one and a half kiddie movies before I started yelling and losing my cool. Seriously, what is it that I can't sit and have my foot up and let me kids watch movies in peace? I can't. Because watching any kind of TV is some sort of drama.

Autism is so unfair. It makes the smallest of things impossible sometimes. It infuriates me. I shouldn't have to sit and endure two children screaming for no reason. My other children shouldn't have to endure two children screaming for no reason.

And more importantly, my children screaming shouldn't be experiencing whatever the hell it is that is making them scream.

That's the thing though. You don't know what's wrong. IT COULD BE NOTHING. THEY MIGHT LIKE THE SOUND. It's like some sick joke, see that child sobbing hysterically? Nothing wrong with him. Just having a sensory moment.

As a mother, it's devastating. My child is hysterical. And I cannot fix it. There should be a fix. I should be able to hold them or sing to them or get them candy and there just IS NO FIX.

I ended up taking a shower and standing in the shower and sobbing. Afterward apologizing to Miles for yelling at him, and for his autism. I know I didn't "do" it, but still, I made him. Any mother with a child that has a congential problem will probably tell you, the guilt of that eats at you every minute of every day. "What did I do wrong?" Probably nothing. Or I passed on bad genes and I couldn't help it.

Sunday ended with early bed times and Monday school started back up. Life is normal again.

I'll have another day like that, some day sooner rather than later. And I'll cry a lot.

Because it's all I can do.

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The Children You Didn't Choose

The other night I sat working at the computer when Julia wheeled her baby up into my leg. "Baby Monkey!" she declared.
I'm not sure King Kong would agree that he's anyone's Baby Monkey. But I am interested in the babies she chooses to play mommy to. She chooses teddy bears, and dolls, and Teenage Mutant Ninja Turtles, and a pair of shoes, and obviously - King Kong.
Her concepts of parenthood are wide. It's smaller than you, you take care of it and love it.
That's it. She whispers "Don't worry I'm here" and I hear my own tone and inflection being mimicked.

When you grow up, it never occurs to you that your baby won't be that perfect bundle of pink, somewhat Winston Churchill looking awesomeness. Even if what they hand you is perfect, you don't know what bombs are laid, errors in DNA, mistakes in that old recombinant DNA that are going to make life different than anyone else you ever knew.

But the truth is, parenthood is that wide, as my two year old's vision of it. It's just that our vision narrows.

We read this book called "I Love You Stinkyface" and the child asks their mom "What if..." they were this monster or that monster, extolling the horrors of that creature. The mother smiles and talks about how she would take care of them, how if they were a gross alien, she'd pack their lunch with bugs and a note that said "I love you my greenie!"

Thats what motherhood is to me. I have four children. They might be King Kong, Teenage Mutant Ninja Turtles and a pair of shoes. But they are mine.

And they need never to worry.

Because I'm here.
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The Children You Didn't Choose

The other night I sat working at the computer when Julia wheeled her baby up into my leg. "Baby Monkey!" she declared.
I'm not sure King Kong would agree that he's anyone's Baby Monkey. But I am interested in the babies she chooses to play mommy to. She chooses teddy bears, and dolls, and Teenage Mutant Ninja Turtles, and a pair of shoes, and obviously - King Kong.
Her concepts of parenthood are wide. It's smaller than you, you take care of it and love it.
That's it. She whispers "Don't worry I'm here" and I hear my own tone and inflection being mimicked.

When you grow up, it never occurs to you that your baby won't be that perfect bundle of pink, somewhat Winston Churchill looking awesomeness. Even if what they hand you is perfect, you don't know what bombs are laid, errors in DNA, mistakes in that old recombinant DNA that are going to make life different than anyone else you ever knew.

But the truth is, parenthood is that wide, as my two year old's vision of it. It's just that our vision narrows.

We read this book called "I Love You Stinkyface" and the child asks their mom "What if..." they were this monster or that monster, extolling the horrors of that creature. The mother smiles and talks about how she would take care of them, how if they were a gross alien, she'd pack their lunch with bugs and a note that said "I love you my greenie!"

Thats what motherhood is to me. I have four children. They might be King Kong, Teenage Mutant Ninja Turtles and a pair of shoes. But they are mine.

And they need never to worry.

Because I'm here.
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Children With Ninja Stealth

I had one of those moments this morning. Those "Oh my god" and visions of Elizabeth Smart race through your head moments.
I got up, beep beep beep alarm going off, and wandered to the bathroom. Then I threw on some clothes so I wasn't greeting bus drivers in my nightie and wandered to the bedroom directly next to ours where the three boys sleep.
We have a toddler bed which is a fire truck that Miles has adopted again, and a bunk which is a double on the bottom and a twin on the top. On the bottom is Charlie - awake and waiting for me, and on the top is Louis, snoring like an old man.
But - where is Miles?

I walk into the room and he isn't in the firetruck bed. He isn't in the double bed. I turn on my FLASHLIGHT app and look under the bed - he's slept under there before.

He isn't there.

My panic was pretty instant but I start playing out logic in my head. My husband is a night owl and has been in bed less than an hour. The gate we recently installed to our hallway is so noisy and hard to work - there is NO WAY someone got through it without waking me. I wake up every time it's touched, at least I think I do.

Miles could be downstairs, he wanders. Maybe he went downstairs to sleep on the sofa...

I walk into the master bedroom trying to be calm to tell Charlie I was going downstairs....

and there is Miles.

Snuggled into bed with his Daddy, piled under the covers so that I hadn't noticed him when I walked through before.

Ninja skills.  My kids have them.

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Children With Ninja Stealth

I had one of those moments this morning. Those "Oh my god" and visions of Elizabeth Smart race through your head moments.
I got up, beep beep beep alarm going off, and wandered to the bathroom. Then I threw on some clothes so I wasn't greeting bus drivers in my nightie and wandered to the bedroom directly next to ours where the three boys sleep.
We have a toddler bed which is a fire truck that Miles has adopted again, and a bunk which is a double on the bottom and a twin on the top. On the bottom is Charlie - awake and waiting for me, and on the top is Louis, snoring like an old man.
But - where is Miles?

I walk into the room and he isn't in the firetruck bed. He isn't in the double bed. I turn on my FLASHLIGHT app and look under the bed - he's slept under there before.

He isn't there.

My panic was pretty instant but I start playing out logic in my head. My husband is a night owl and has been in bed less than an hour. The gate we recently installed to our hallway is so noisy and hard to work - there is NO WAY someone got through it without waking me. I wake up every time it's touched, at least I think I do.

Miles could be downstairs, he wanders. Maybe he went downstairs to sleep on the sofa...

I walk into the master bedroom trying to be calm to tell Charlie I was going downstairs....

and there is Miles.

Snuggled into bed with his Daddy, piled under the covers so that I hadn't noticed him when I walked through before.

Ninja skills.  My kids have them.

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Here Mommy, Now You Wear This Snake

Girls are weird. My daughter said these words to me yesterday as she wrapped a toy snake around me like a feather boa. They're far weirder than boys I've decided. I'm pretty girly and girls baffle me.

I wore Hello Kitty barrettes to an executive meeting the other day. I don't think that makes me a WOMAN CHILD but rather it simply means that by the rules of post feminism I can be whomever I want. I'm 43. I'm NOT OLD.

I am, though, exactly old enough to remember that there used to be a place on forms that asked when your last menstrual cycle was, when you were applying for a job. They weren't allowed to ASK you any more. That was illegal. But it was still on the forms in some places, a reminder that your mother's life was different from yours in ways that were unfathomable.

And now I have a daughter.

She has a purse in which she puts pieces from a train and matchbox cars. She likes books and dolls and playing with toy kitchens.



She will never live in a world where those forms exist. She isn't being raised to think of girl toys and boy toys, they're just toys. My own mother raised me like this, she was very forward thinking. I'm just the norm.

She's also tough. She's strong willed, outspoken, raging through the terrible twos as she discovers that no, in fact every thing is NOT Hers no matter how much she sobs. She is me born 40 years later. But she's also her own person in so many ways it's overwhelming. She's like her brother in her empathy and kindness. This morning as I pinned my sweaty hair up out of my face she put her hand on my hip and looked up and said "Oh you're beautiful Mommy."

Despite the lessons she is learning of the TERRIBLE TWOS and despite the crazy words I hear being spouted by the Fundies by their never ending war on female rights, I look at this amazing girl and I think, she was born at such a lucky time.


Perhaps I am an optimist. But I do think, that despite all the things I teach her that everything is not hers, quite the opposite is true.

She's got the whole world. And she can do anything.

Here Mommy, Now You Wear This Snake

Girls are weird. My daughter said these words to me yesterday as she wrapped a toy snake around me like a feather boa. They're far weirder than boys I've decided. I'm pretty girly and girls baffle me.

I wore Hello Kitty barrettes to an executive meeting the other day. I don't think that makes me a WOMAN CHILD but rather it simply means that by the rules of post feminism I can be whomever I want. I'm 43. I'm NOT OLD.

I am, though, exactly old enough to remember that there used to be a place on forms that asked when your last menstrual cycle was, when you were applying for a job. They weren't allowed to ASK you any more. That was illegal. But it was still on the forms in some places, a reminder that your mother's life was different from yours in ways that were unfathomable.

And now I have a daughter.

She has a purse in which she puts pieces from a train and matchbox cars. She likes books and dolls and playing with toy kitchens.



She will never live in a world where those forms exist. She isn't being raised to think of girl toys and boy toys, they're just toys. My own mother raised me like this, she was very forward thinking. I'm just the norm.

She's also tough. She's strong willed, outspoken, raging through the terrible twos as she discovers that no, in fact every thing is NOT Hers no matter how much she sobs. She is me born 40 years later. But she's also her own person in so many ways it's overwhelming. She's like her brother in her empathy and kindness. This morning as I pinned my sweaty hair up out of my face she put her hand on my hip and looked up and said "Oh you're beautiful Mommy."

Despite the lessons she is learning of the TERRIBLE TWOS and despite the crazy words I hear being spouted by the Fundies by their never ending war on female rights, I look at this amazing girl and I think, she was born at such a lucky time.


Perhaps I am an optimist. But I do think, that despite all the things I teach her that everything is not hers, quite the opposite is true.

She's got the whole world. And she can do anything.

Remember That Time I Had a Heart Attack?

Neither do I.

Well and that's overly dramatic, because they're not sure what exactly is going on. But I was being a responsible adult yesterday and having a physical with my general physician and as they are doing my EKG he FROWNS.
Then he looks at me, and back at the paper and says, "Have you been having chest pains?"

Ummmm. No.

He then says they are going to run the EKG for a few more minutes, have me lie down part of the time, have me sit up part of the time, all the while he is frowning.

Then he shows it to me.

You know how your heart beat on the EKG paper goes UP UP UP in beats? One of mine goes down. Which is bizarre. It's also a change from my last EKG which he pulled out of my file. So something has changed.

I looked it up, and it's either indicative that I had a heart attack, might have a heart attack or it's benign and means nothing at all. On many levels, that's just like everyone else on the planet.

But I'm kind of disconcerted for sure.

Next we'll do a stress test and figure out if I need to do more tests after that.

Stupid mortality. Stop knocking at my door. I got four tiny humans and one big one who need me.

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Remember That Time I Had a Heart Attack?

Neither do I.

Well and that's overly dramatic, because they're not sure what exactly is going on. But I was being a responsible adult yesterday and having a physical with my general physician and as they are doing my EKG he FROWNS.
Then he looks at me, and back at the paper and says, "Have you been having chest pains?"

Ummmm. No.

He then says they are going to run the EKG for a few more minutes, have me lie down part of the time, have me sit up part of the time, all the while he is frowning.

Then he shows it to me.

You know how your heart beat on the EKG paper goes UP UP UP in beats? One of mine goes down. Which is bizarre. It's also a change from my last EKG which he pulled out of my file. So something has changed.

I looked it up, and it's either indicative that I had a heart attack, might have a heart attack or it's benign and means nothing at all. On many levels, that's just like everyone else on the planet.

But I'm kind of disconcerted for sure.

Next we'll do a stress test and figure out if I need to do more tests after that.

Stupid mortality. Stop knocking at my door. I got four tiny humans and one big one who need me.

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