I'm Really Not That Strong

People say that to us a lot. "Oh you're so strong" - or something similar. We're not I assure you. But when you don't have any choices you just make do.

That's the midwestern in us. Midwesterners MAKE DO. You deal with what you have and you go on. No reason to grouse about it.

I think though that it's important since I share a lot about being a Mom of special needs children, that I don't paint some false idea that if you just PUT ON A HAPPY FACE EVERYTHING WILL BE ALRIGHT. Seriously no, it won't be alright. Everything will be exactly as it was before you put on your happy face. I'm not better at this than you, I'm not tougher than you. I am not good at this. I'm just doing it every day, because I have do.

I do however, try to NOT dwell on the things that are threatening to destroy my soul if I let them linger.

Yesterday was Charlie's IEP. His teachers love him. He's progressing so very well. He's throwing less tantrums, will actually attend to his work sometimes. He can type his name. They say he's SO well behaved during community skills (that's where they go shopping at the grocery or at the mall). They are really pleased and think he's having a great year.

He's developmentally 39 months old, give or take.

He's 9.

If you think that isn't a knife through my heart, you're wrong. I had to blink back my tears as that went across the screen - and smile as they told me how even though he doesn't say the ending consonant for many words they aren't worried - and nod while we talked about can he work a zipper? Could we work on having him make a sandwich for lunch on the weekends?

I am sick as a dog right now and I can't talk. At bed time the last two nights, instead of reading, I've played the video of Goodnight Moon on my phone to the twins at bed time. I cried both nights while it played.

Here's why. Who is going to read them/play them Goodnight Moon when I'm dead? Can I put that in my will? I need someone to do this. I need someone to read Goodnight Moon to my babies who aren't going to be babies but, oh god they ARE going to be still little guys, possibly all their lives. Especially my Charlie. How will they go to sleep without me?

These are the things, that threaten my sanity and my well being. These are my fears and worries. What happens if I'm not here to read them a story when they are 45?

I wish I knew.

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I'm Really Not That Strong

People say that to us a lot. "Oh you're so strong" - or something similar. We're not I assure you. But when you don't have any choices you just make do.

That's the midwestern in us. Midwesterners MAKE DO. You deal with what you have and you go on. No reason to grouse about it.

I think though that it's important since I share a lot about being a Mom of special needs children, that I don't paint some false idea that if you just PUT ON A HAPPY FACE EVERYTHING WILL BE ALRIGHT. Seriously no, it won't be alright. Everything will be exactly as it was before you put on your happy face. I'm not better at this than you, I'm not tougher than you. I am not good at this. I'm just doing it every day, because I have do.

I do however, try to NOT dwell on the things that are threatening to destroy my soul if I let them linger.

Yesterday was Charlie's IEP. His teachers love him. He's progressing so very well. He's throwing less tantrums, will actually attend to his work sometimes. He can type his name. They say he's SO well behaved during community skills (that's where they go shopping at the grocery or at the mall). They are really pleased and think he's having a great year.

He's developmentally 39 months old, give or take.

He's 9.

If you think that isn't a knife through my heart, you're wrong. I had to blink back my tears as that went across the screen - and smile as they told me how even though he doesn't say the ending consonant for many words they aren't worried - and nod while we talked about can he work a zipper? Could we work on having him make a sandwich for lunch on the weekends?

I am sick as a dog right now and I can't talk. At bed time the last two nights, instead of reading, I've played the video of Goodnight Moon on my phone to the twins at bed time. I cried both nights while it played.

Here's why. Who is going to read them/play them Goodnight Moon when I'm dead? Can I put that in my will? I need someone to do this. I need someone to read Goodnight Moon to my babies who aren't going to be babies but, oh god they ARE going to be still little guys, possibly all their lives. Especially my Charlie. How will they go to sleep without me?

These are the things, that threaten my sanity and my well being. These are my fears and worries. What happens if I'm not here to read them a story when they are 45?

I wish I knew.

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Traditions Happen

Thanksgiving in families falls into a pattern I think. At our house it's turned into - Louis makes a pie of some sort - this year it's chocolate pretzel pecan pie. He drafted helpers.

My Hunny invents a new kind of dressing (this year featuring monkey bread and TexMex muffins) and when it's time, Louis goes to help with the bird.

It seems like a little thing, but I watch it every year and feel like it's a father son tradition that started when he was a little tiny guy who just wanted to help (at that time, he was allowed to SHAKE the spices and sprinkle some) and now he's a big guy and it's just something we do.

It's a weird little tradition that feels like we'd be missing something if we didn't do it that way. It's just us on Thanksgiving since we live so far from everyone, and it's nice to have these little things that make it so special.

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Traditions Happen

Thanksgiving in families falls into a pattern I think. At our house it's turned into - Louis makes a pie of some sort - this year it's chocolate pretzel pecan pie. He drafted helpers.

My Hunny invents a new kind of dressing (this year featuring monkey bread and TexMex muffins) and when it's time, Louis goes to help with the bird.

It seems like a little thing, but I watch it every year and feel like it's a father son tradition that started when he was a little tiny guy who just wanted to help (at that time, he was allowed to SHAKE the spices and sprinkle some) and now he's a big guy and it's just something we do.

It's a weird little tradition that feels like we'd be missing something if we didn't do it that way. It's just us on Thanksgiving since we live so far from everyone, and it's nice to have these little things that make it so special.

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A Diaper Changing Steam Of Consciousness

Not all Special Needs parents have to deal with diapers on kids that are way too big for diapers. However, our little guys just don't get it. Well, that's not true. They TOTALLY know what the potty is for. It's the idea of ONLY using the potty that escapes them.

So we have our conundrum you see, as they'll go in their pants ten minutes after going in the potty. Without so much as a care. They won't give you a heads up. The don't conceive of it. I'm not sure how we'll ever potty train them or if we will. I have hopes for Miles. Charlie? Hmmm I dunno. Charlie is more challenged.

I thought I would share a slice of life moment of the more grotesque sort. Turn away now if you are squeamish or can't handle poop talk.

Although if you can't handle poop talk, really why are you here? Have you even read this blog? We've got poop talk.

First there is the sniffing. Oh god, someone's pooped. Who pooped? Everyone bring your butt here for a check - who's poopie?

Once the pooper is found, we retreat to the bedroom for a cleanup and a new pullup.

"I need diaper" he says.

"Yes, I know. You pooped."

"Yeah." he answers.

Your first thought when changing a too big kids diaper is to get out what you need. The husband is better at this than me. My list includes bag for the diaper, new diaper, wipes, changing pad. Then - you have the poop.

Sometimes you think things like this:

• Why does this smell like plastic?
• What IS that? Is that plastic?
• When did we have corn?
• GOD What is this?
• WHY DO WE SERVE POPCORN WHY WHY WHY?
• Is that....a toy? What is THAT?
• Oh god is that a string?
• OMG WHAT IS IT A STRING TO?
• How LONG IS THIS STRING?

But recently we've had more like this:

• God that's....what is that?
• It's strings and...is this cloth?
• Oh my god how much is there of this? What is it?
• IS THIS QUILT? FROM THE DOUBLE WEDDING RING QUILT?
• Oh my GOD HE AT THE QUILT
• Oh god more string

No joke. He ate huge longish chunks of a quilt that his brother liked to sleep with. It's old, not sentimental and it was fraying a LOT but his brother liked it so we had been allowing it to be used. 

That's a difference that it's hard to explain. I have to be aware of what is in my house because I might find it in a diaper. And it might not be digestible and it might hurt him. So I have to look at small things, toys, doodads and wonder if it will end up in a diaper or send us to the ER.

I'm hoping we've finished with the diapers full of poo-quilt.

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A Diaper Changing Steam Of Consciousness

Not all Special Needs parents have to deal with diapers on kids that are way too big for diapers. However, our little guys just don't get it. Well, that's not true. They TOTALLY know what the potty is for. It's the idea of ONLY using the potty that escapes them.

So we have our conundrum you see, as they'll go in their pants ten minutes after going in the potty. Without so much as a care. They won't give you a heads up. The don't conceive of it. I'm not sure how we'll ever potty train them or if we will. I have hopes for Miles. Charlie? Hmmm I dunno. Charlie is more challenged.

I thought I would share a slice of life moment of the more grotesque sort. Turn away now if you are squeamish or can't handle poop talk.

Although if you can't handle poop talk, really why are you here? Have you even read this blog? We've got poop talk.

First there is the sniffing. Oh god, someone's pooped. Who pooped? Everyone bring your butt here for a check - who's poopie?

Once the pooper is found, we retreat to the bedroom for a cleanup and a new pullup.

"I need diaper" he says.

"Yes, I know. You pooped."

"Yeah." he answers.

Your first thought when changing a too big kids diaper is to get out what you need. The husband is better at this than me. My list includes bag for the diaper, new diaper, wipes, changing pad. Then - you have the poop.

Sometimes you think things like this:

• Why does this smell like plastic?
• What IS that? Is that plastic?
• When did we have corn?
• GOD What is this?
• WHY DO WE SERVE POPCORN WHY WHY WHY?
• Is that....a toy? What is THAT?
• Oh god is that a string?
• OMG WHAT IS IT A STRING TO?
• How LONG IS THIS STRING?

But recently we've had more like this:

• God that's....what is that?
• It's strings and...is this cloth?
• Oh my god how much is there of this? What is it?
• IS THIS QUILT? FROM THE DOUBLE WEDDING RING QUILT?
• Oh my GOD HE AT THE QUILT
• Oh god more string

No joke. He ate huge longish chunks of a quilt that his brother liked to sleep with. It's old, not sentimental and it was fraying a LOT but his brother liked it so we had been allowing it to be used. 

That's a difference that it's hard to explain. I have to be aware of what is in my house because I might find it in a diaper. And it might not be digestible and it might hurt him. So I have to look at small things, toys, doodads and wonder if it will end up in a diaper or send us to the ER.

I'm hoping we've finished with the diapers full of poo-quilt.

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Baby You Light Up My World Like Nobody Else

You see that face? That's the face of a three year old entranced, listening to her favorite song "You Don't Know You're Beautiful" but One Direction. Normally this song gets played on a tablet, or a phone, and it elicits a lot of dancing and singing. In fact, dancing and singing is required, even of her brothers. 

This time I was goofing around on the PC and she asked me to play the song on my phone - instead I fired up Youtube and let her watch it on my PC screen. 

She stood there mesmerized, hardly moving, barely singing along through the song.

About halfway through, she looked up at me with this big smile and said "Those guys are singing to ME! They think I'm beautiful!" 

Part of me thought that was adorable. Part of me wondered, how HARDWIRED are we as females to want to be beautiful? She's been girly, and obsessed with being girly as long as she could make a decision. She announces that she's adorable. 

Lately I've started telling her she's smart. She IS smart. But, first of all she IS beautiful, and second of all, that's not what's most important. Smart will carry her through her life. Smart will make her successful. Smart will help her make good decisions that will make a happier life.

Beautiful is just the icing on a cake that is made by SMART.

I hope she hears me.

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Baby You Light Up My World Like Nobody Else

You see that face? That's the face of a three year old entranced, listening to her favorite song "You Don't Know You're Beautiful" but One Direction. Normally this song gets played on a tablet, or a phone, and it elicits a lot of dancing and singing. In fact, dancing and singing is required, even of her brothers. 

This time I was goofing around on the PC and she asked me to play the song on my phone - instead I fired up Youtube and let her watch it on my PC screen. 

She stood there mesmerized, hardly moving, barely singing along through the song.

About halfway through, she looked up at me with this big smile and said "Those guys are singing to ME! They think I'm beautiful!" 

Part of me thought that was adorable. Part of me wondered, how HARDWIRED are we as females to want to be beautiful? She's been girly, and obsessed with being girly as long as she could make a decision. She announces that she's adorable. 

Lately I've started telling her she's smart. She IS smart. But, first of all she IS beautiful, and second of all, that's not what's most important. Smart will carry her through her life. Smart will make her successful. Smart will help her make good decisions that will make a happier life.

Beautiful is just the icing on a cake that is made by SMART.

I hope she hears me.

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Balloons and Autism

One of any coveted item in a house of four children is always a recipe for disaster. The minimum acceptable number of ANY sort of desired commodity is TWO - at least you can go through the motions of taking turns. But who am I kidding? FOUR. That's how many you actually need.

Especially when two of your audience are severely autistic and are sharing impaired on a good day.

Yesterday was the girl's last soccer game, and there was a little party and awards. And - BALLOONS. You see that green menace poking in the upper left hand side of this photo?

It's the devil's minion.

There has been screaming and fighting, and turn taking of the worst sort since the damn thing came home yesterday.

I hoped it would fly away "Oh NO! It flew away! I'm sorry!" I hoped it popped. "Oh dear it popped lets throw it away!"

But no. The damn thing is still here. As we speak, there is a very selfish version of turn taking happening. Julia keeps taking it away from the twins and then laughing "AHHAHAHA I TOOK AWAY THE BALLOON."  Miles is using his best words, "I want bawoon pwease" and Charlie is also using words. "Bawoon. I want bawoon."

Basically, it's the Holy Grail of coveted toys.

I tried to explain to her, earlier, why I didn't want to get it out. I sat her on my lap and explained that maybe we could get it out later. I said to her, that because the twins were having a bad autism morning (they were) I just didn't WANT to deal with it. I asked her if she knew what I meant, about autism.

"Do you know what I mean, when I say Miles and Charlie are autistic?"
"Yes they're like babies."

I thought about that for a minute, and realized from a 3 year old perspective, that's probably ok.

So I said yes and that I just didn't WANT to listen to everyone fight for the next two hours until it popped.

She told me not to worry, she'd protect it from them and could I please get it?

Ugh. So it's out. And there is fighting, although at this point she's resigned herself that it isn't going to float any more and is watching Toy Story. I spent ten minutes figuring out how to work the DVD player (it requires three remotes dang) so somebody better damn well watch it.

Charlie had chosen to sit on the ottoman and occasionally chase the balloon.

But Miles has emerged supreme balloon master.

With occasional shifts of power...

I swear to god the next balloon that tries to come to our house will meet with an untimely end.




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Balloons and Autism

One of any coveted item in a house of four children is always a recipe for disaster. The minimum acceptable number of ANY sort of desired commodity is TWO - at least you can go through the motions of taking turns. But who am I kidding? FOUR. That's how many you actually need.

Especially when two of your audience are severely autistic and are sharing impaired on a good day.

Yesterday was the girl's last soccer game, and there was a little party and awards. And - BALLOONS. You see that green menace poking in the upper left hand side of this photo?

It's the devil's minion.

There has been screaming and fighting, and turn taking of the worst sort since the damn thing came home yesterday.

I hoped it would fly away "Oh NO! It flew away! I'm sorry!" I hoped it popped. "Oh dear it popped lets throw it away!"

But no. The damn thing is still here. As we speak, there is a very selfish version of turn taking happening. Julia keeps taking it away from the twins and then laughing "AHHAHAHA I TOOK AWAY THE BALLOON."  Miles is using his best words, "I want bawoon pwease" and Charlie is also using words. "Bawoon. I want bawoon."

Basically, it's the Holy Grail of coveted toys.

I tried to explain to her, earlier, why I didn't want to get it out. I sat her on my lap and explained that maybe we could get it out later. I said to her, that because the twins were having a bad autism morning (they were) I just didn't WANT to deal with it. I asked her if she knew what I meant, about autism.

"Do you know what I mean, when I say Miles and Charlie are autistic?"
"Yes they're like babies."

I thought about that for a minute, and realized from a 3 year old perspective, that's probably ok.

So I said yes and that I just didn't WANT to listen to everyone fight for the next two hours until it popped.

She told me not to worry, she'd protect it from them and could I please get it?

Ugh. So it's out. And there is fighting, although at this point she's resigned herself that it isn't going to float any more and is watching Toy Story. I spent ten minutes figuring out how to work the DVD player (it requires three remotes dang) so somebody better damn well watch it.

Charlie had chosen to sit on the ottoman and occasionally chase the balloon.

But Miles has emerged supreme balloon master.

With occasional shifts of power...

I swear to god the next balloon that tries to come to our house will meet with an untimely end.




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