Everyone Who Told Me Amnio Didn't Hurt - FIRST AGAINST THE WALL!

Well we spent the better part of our day at the high risk OB enjoying all the lovely things they offer.
Like...GENETIC COUNSELING!
And BLOOD DRAWS WITH LOTS AND LOTS OF VIALS!
AND AMNIOCENTESIS! Can I get a WOOT WOOT?

Ok ok ok. lots of people want to know what all went on and what all happened so lemme recap.

First we met with the genetic counselor, who was actually quite nice and very not-scary and she took our family histories for bad DNA, explained the amnio again and then offered us the opportunity to participate in two different studies. One will use our chromosomes to help determine if they can link specific chromosome abnormality to diseases (outside of the big ones they already know about). They're talking about super super small defects or irregularities that have to be seen with the microscope. Of course, I'd be a dick if I said NO to that - it could provide SERIOUS help to people in the future.
The second study is one where they are trying to be able to detect Down's Syndrome via blood draw AS ACCURATELY as they do with amnio. I had to donate extra blood and extra fluid to BOTH of these studies. But again....especially after HAVING the amnio - I'd do anything to help someone NOT have to go through that.

The blood draws sucked as blood draws do. I'm no hero. I'm not tough. People will say "But you've had three kids!" and I'll respond that YEAH, and I'm a total fucking whiny baby throughout the entire childbirth process too. You don't want any part of me during labor until I'm properly drugged up because I am NOT a trooper. WHY? Because there are no REWARDS for being a trooper. So I'm going to be exactly as big of a baby as I feel like being.

But the amnio-ack. Ok I admit I went in terrified and then they TOOK so FUCKING LONG to get to it (we were there like 4 hours) that my husband had to LEAVE because our kids would be getting off the bus. So then I'm on my own. The doctor that we don't like much (not the one from the phone call) was actually really sweet and realized I was scared and did her best to be super kind and supportive.

Here is what it is like. When the needle goes into your skin, it's like a blood draw, kind of like damn that sucks. When the needle goes into your uterus.....it feels like a hot metal rod. I can't explain it any other way. It feels huge. It's not a damn pinch like they said. It's unimaginable and it feels exactly like what it is. A piece of metal inside you.

I might have done better, and be less whiny but the baby kept moving, stretching up into the empty pocket where the needle was.

And she kept having to withdraw "slightly". Just enough to repeat the most painful part of the procedure over and over and over.

But suddenly I felt a much sharper and WORSE version of the same pain and then she says "OK we're done."

I had been gripped the sides of the table so hard, and clenching so hard, I could barely stand up. They tell me THEN that I can't go to work tomorrow (WTF?) and that I'm supposed to take it easy and lay around like a slug for 24 hours.

I came home and had peanut butter, cheese, crackers, chocolate covered cherry and a glass of wine and slept. I am not sure if I am physically hurt or just emotionally scarred.

I could have results as early as tomorrow for the "fast screen" or it could be Monday due to the holiday.

So there you go. You are all caught up.

Everyone Who Told Me Amnio Didn't Hurt - FIRST AGAINST THE WALL!

Well we spent the better part of our day at the high risk OB enjoying all the lovely things they offer.
Like...GENETIC COUNSELING!
And BLOOD DRAWS WITH LOTS AND LOTS OF VIALS!
AND AMNIOCENTESIS! Can I get a WOOT WOOT?

Ok ok ok. lots of people want to know what all went on and what all happened so lemme recap.

First we met with the genetic counselor, who was actually quite nice and very not-scary and she took our family histories for bad DNA, explained the amnio again and then offered us the opportunity to participate in two different studies. One will use our chromosomes to help determine if they can link specific chromosome abnormality to diseases (outside of the big ones they already know about). They're talking about super super small defects or irregularities that have to be seen with the microscope. Of course, I'd be a dick if I said NO to that - it could provide SERIOUS help to people in the future.
The second study is one where they are trying to be able to detect Down's Syndrome via blood draw AS ACCURATELY as they do with amnio. I had to donate extra blood and extra fluid to BOTH of these studies. But again....especially after HAVING the amnio - I'd do anything to help someone NOT have to go through that.

The blood draws sucked as blood draws do. I'm no hero. I'm not tough. People will say "But you've had three kids!" and I'll respond that YEAH, and I'm a total fucking whiny baby throughout the entire childbirth process too. You don't want any part of me during labor until I'm properly drugged up because I am NOT a trooper. WHY? Because there are no REWARDS for being a trooper. So I'm going to be exactly as big of a baby as I feel like being.

But the amnio-ack. Ok I admit I went in terrified and then they TOOK so FUCKING LONG to get to it (we were there like 4 hours) that my husband had to LEAVE because our kids would be getting off the bus. So then I'm on my own. The doctor that we don't like much (not the one from the phone call) was actually really sweet and realized I was scared and did her best to be super kind and supportive.

Here is what it is like. When the needle goes into your skin, it's like a blood draw, kind of like damn that sucks. When the needle goes into your uterus.....it feels like a hot metal rod. I can't explain it any other way. It feels huge. It's not a damn pinch like they said. It's unimaginable and it feels exactly like what it is. A piece of metal inside you.

I might have done better, and be less whiny but the baby kept moving, stretching up into the empty pocket where the needle was.

And she kept having to withdraw "slightly". Just enough to repeat the most painful part of the procedure over and over and over.

But suddenly I felt a much sharper and WORSE version of the same pain and then she says "OK we're done."

I had been gripped the sides of the table so hard, and clenching so hard, I could barely stand up. They tell me THEN that I can't go to work tomorrow (WTF?) and that I'm supposed to take it easy and lay around like a slug for 24 hours.

I came home and had peanut butter, cheese, crackers, chocolate covered cherry and a glass of wine and slept. I am not sure if I am physically hurt or just emotionally scarred.

I could have results as early as tomorrow for the "fast screen" or it could be Monday due to the holiday.

So there you go. You are all caught up.

Ring Ring:BSA - It's the Clue Phone,It's For YOU!

So last year, when the big boy was in kindergarten, he was mistakenly given a flyer about being a cub scout. He came home ecstatic and that afternoon he and his father went to the school to sign up. He came home crushed, absolutely crushed, because he wasn't OLD enough.

A year passed.

We enter 1st grade and AGAIN we get the flyer about being a cub scout. We ALL go to the sign up meeting and sure enough, there is a legion of grown ups in their boy scout regalia taking our money and giving us forms to fill out and and giving us flyers about ALL THE EVENTS THAT WE ARE GOING TO HAVE and guess what the whole family is expected to attend.

I'm not even getting into how bizarre that is compared to the Girl Scouts.

But my problem is this, they took our money, we shelled out money for a UNIFORM and by the time it was said and done, they didn't have a troop leader - den leader - whatever. Nor did they have a PLAN. But they did have $200 of our money.

You would think, that an organization as old as the Boy Scouts would have a PLAN - after all, their bumper stickers proudly proclaim - 100 years of Scouting. Isn't their motto BE PREPARED? Well lemme tell you, they aren't.

We had a pack meeting (that's where all the dens get together once a month). No word about a den meeting. We had another pack meeting. No talk about a den meeting. When we finally start getting communication - they suggest WE do it.

Are you shitting me?

Don't get me wrong. I was in scouting for years. And if we didn't have TWO - count'em TWO special needs children and a baby on the way - I'd entertain it. I don't have any problem pulling our weight and participating. But it just isn't feasible or reasonable.

I said something to one of my coworkers who is one of the grand poobahs locally and some other leader held a den meeting. ONE DEN MEETING. We joined in August. At that den meeting it was again suggested that we be the leaders. Or my husband do it. Oh - and during sign up - there were so many kids joining that it would've been TWO dens. At the only den meeting held, there were TWO KIDS. My kid, and another.

Basically - they lost two dens worth of cub scouts because of their failure to adhere to their own motto - BE PREPARED.

At our last pack meeting, the big boy got a badge. Why? What did he earn a badge for since we haven't DONE anything? I don't know. YOU TELL ME! I'd feel worse, but the parents BEHIND ME also didn't know why their kids were getting them,and they were older than my kid AND IN ACTIVE DENS.

So this weekend, we took a boat that the big boy had painted - one he had been given at his ONLY DEN MEETING (I'm peeved about that can you tell?) and attended the pack's raingutter regatta.

He was the only "Tiger Cub" present. I am sure that this is because the other boy has ALSO dropped out now.

He lost both of his races, but won 1st prize for best design. Oh what was the prize? Oh there wasn't one. Apparently it didn't occur to anyone that there should BE prizes.

So I am now going to help you out, Boy Scouts of America. I am going to help you with some words of wisdom from someone WITH a clue.

1. Everyone has to know what is going on. This means you have to speak loudly, and clearly and concisely. I know you're very worried about some prayer you wrote - but Jesus wants you to SHARE information, not just mumble prayers that no one can hear.
2. Have a plan. I cannot stand to watch 5 adults in the front of a room and none of you know what you are doing, reading from papers you haven't looked at before THAT moment in time. Seriously, it's cool if just ONE of you does it all - as long as that one is prepared. Jesus wants it that way also. He likes it when you don't look stupid.
3. Initiate and instill camaraderie. See - the biggest thing that children, especially young children, learn in scouting is camaraderie. It's the forging of friendships that isn't built around television and video games. You would think, if nothing else, that experienced leaders would be prepared to pick up one extra den meeting a month VS. sacrificing two entire dens. Some of you people live and breathe this stuff-I know you do, I can tell by how well pressed your uniform is. You are failing. Spend less time ironing, more time figuring out how to include EVERYONE.

My little boy has been told by the BSA that he is unimportant to them. He is only 7 so he doesn't perceive this. But I do. It's even been suggested that we just "go through his handbook with him". Wow, cuz that's fun.

I loved Scouting. But this is nothing like Scouting. Maybe I should put him in the Girl Scouts.......

Ring Ring:BSA - It's the Clue Phone,It's For YOU!

So last year, when the big boy was in kindergarten, he was mistakenly given a flyer about being a cub scout. He came home ecstatic and that afternoon he and his father went to the school to sign up. He came home crushed, absolutely crushed, because he wasn't OLD enough.

A year passed.

We enter 1st grade and AGAIN we get the flyer about being a cub scout. We ALL go to the sign up meeting and sure enough, there is a legion of grown ups in their boy scout regalia taking our money and giving us forms to fill out and and giving us flyers about ALL THE EVENTS THAT WE ARE GOING TO HAVE and guess what the whole family is expected to attend.

I'm not even getting into how bizarre that is compared to the Girl Scouts.

But my problem is this, they took our money, we shelled out money for a UNIFORM and by the time it was said and done, they didn't have a troop leader - den leader - whatever. Nor did they have a PLAN. But they did have $200 of our money.

You would think, that an organization as old as the Boy Scouts would have a PLAN - after all, their bumper stickers proudly proclaim - 100 years of Scouting. Isn't their motto BE PREPARED? Well lemme tell you, they aren't.

We had a pack meeting (that's where all the dens get together once a month). No word about a den meeting. We had another pack meeting. No talk about a den meeting. When we finally start getting communication - they suggest WE do it.

Are you shitting me?

Don't get me wrong. I was in scouting for years. And if we didn't have TWO - count'em TWO special needs children and a baby on the way - I'd entertain it. I don't have any problem pulling our weight and participating. But it just isn't feasible or reasonable.

I said something to one of my coworkers who is one of the grand poobahs locally and some other leader held a den meeting. ONE DEN MEETING. We joined in August. At that den meeting it was again suggested that we be the leaders. Or my husband do it. Oh - and during sign up - there were so many kids joining that it would've been TWO dens. At the only den meeting held, there were TWO KIDS. My kid, and another.

Basically - they lost two dens worth of cub scouts because of their failure to adhere to their own motto - BE PREPARED.

At our last pack meeting, the big boy got a badge. Why? What did he earn a badge for since we haven't DONE anything? I don't know. YOU TELL ME! I'd feel worse, but the parents BEHIND ME also didn't know why their kids were getting them,and they were older than my kid AND IN ACTIVE DENS.

So this weekend, we took a boat that the big boy had painted - one he had been given at his ONLY DEN MEETING (I'm peeved about that can you tell?) and attended the pack's raingutter regatta.

He was the only "Tiger Cub" present. I am sure that this is because the other boy has ALSO dropped out now.

He lost both of his races, but won 1st prize for best design. Oh what was the prize? Oh there wasn't one. Apparently it didn't occur to anyone that there should BE prizes.

So I am now going to help you out, Boy Scouts of America. I am going to help you with some words of wisdom from someone WITH a clue.

1. Everyone has to know what is going on. This means you have to speak loudly, and clearly and concisely. I know you're very worried about some prayer you wrote - but Jesus wants you to SHARE information, not just mumble prayers that no one can hear.
2. Have a plan. I cannot stand to watch 5 adults in the front of a room and none of you know what you are doing, reading from papers you haven't looked at before THAT moment in time. Seriously, it's cool if just ONE of you does it all - as long as that one is prepared. Jesus wants it that way also. He likes it when you don't look stupid.
3. Initiate and instill camaraderie. See - the biggest thing that children, especially young children, learn in scouting is camaraderie. It's the forging of friendships that isn't built around television and video games. You would think, if nothing else, that experienced leaders would be prepared to pick up one extra den meeting a month VS. sacrificing two entire dens. Some of you people live and breathe this stuff-I know you do, I can tell by how well pressed your uniform is. You are failing. Spend less time ironing, more time figuring out how to include EVERYONE.

My little boy has been told by the BSA that he is unimportant to them. He is only 7 so he doesn't perceive this. But I do. It's even been suggested that we just "go through his handbook with him". Wow, cuz that's fun.

I loved Scouting. But this is nothing like Scouting. Maybe I should put him in the Girl Scouts.......

Stretching His Wings

My oldest child is not at home. He is spending the night at a friend's house tonight.

It is the first time he has done such a thing.

He's not here telling me about various inconsistencies in the Star Wars the Clone Wars vehicles episode to episode. He's not telling me a joke he made up which is not a joke.

He's not here.

I don't like it.

I won't lie and say I've never been without him - I have. I've travelled for work and stuff and been away from him. But he was HERE. He was home. If I am here, he's supposed to be HERE.

Now he's at the home of one of his very good friends, with a wonderful family and I hear there is pizza and ice cream sandwiches going on tonight and I KNOW that this is going to be a night he talks about forever. He is doing what I did so many times, over and over and over.

He's having a sleepover.

He's never had sleepovers at grandparents or relatives, no one ever lived close to us. He's never had friends to have sleepovers with until now - so I never had to cross this bridge.

I didn't know I wasn't ready when I said yes. I didn't know I wasn't ready when I rolled up his sleeping bag or packed his backpack and picked out jammies. I didn't know I wasn't ready.....until we drove away.

I don't like it because it's the first of 1000 steps that will take him away from me into his own life. And I don't begrudge him or want him to have anything BUT his own fulfilling independent life.

But he's 7. And frankly, I just wasn't ready.

Stretching His Wings

My oldest child is not at home. He is spending the night at a friend's house tonight.

It is the first time he has done such a thing.

He's not here telling me about various inconsistencies in the Star Wars the Clone Wars vehicles episode to episode. He's not telling me a joke he made up which is not a joke.

He's not here.

I don't like it.

I won't lie and say I've never been without him - I have. I've travelled for work and stuff and been away from him. But he was HERE. He was home. If I am here, he's supposed to be HERE.

Now he's at the home of one of his very good friends, with a wonderful family and I hear there is pizza and ice cream sandwiches going on tonight and I KNOW that this is going to be a night he talks about forever. He is doing what I did so many times, over and over and over.

He's having a sleepover.

He's never had sleepovers at grandparents or relatives, no one ever lived close to us. He's never had friends to have sleepovers with until now - so I never had to cross this bridge.

I didn't know I wasn't ready when I said yes. I didn't know I wasn't ready when I rolled up his sleeping bag or packed his backpack and picked out jammies. I didn't know I wasn't ready.....until we drove away.

I don't like it because it's the first of 1000 steps that will take him away from me into his own life. And I don't begrudge him or want him to have anything BUT his own fulfilling independent life.

But he's 7. And frankly, I just wasn't ready.

Hi This is Dr Jones, I've Got Some Really Bad News

This, in my opinion is not the way to start any conversation with a pregnant woman that doesn't end with "And your baby is dead."


I went last Friday for my next round of sequential screening - and they RAVED about the baby on ultrasound. She looks great, everything looks great, and I quote "WE HAVE NO CONCERNS".


Then I get the call from Mr. Bedside Manner. Oh excuse me, DOCTOR Bedside Manner.


I hold my breathe while he talks. "Well all of your risk factors have shot way up, we're especially concerned about your trisomy 18 risk factor which has shot to 1:85. We are going to need you to come in next week for more ultrasound and additional screening tests."


And I sob.


Trisomy 18, if you don't want to click on the link, means death for your baby. It's an extra chromosome on pair #18 and it includes horrendous birth defects and odds so bad - I'm amazed everyone doesn't terminate on the spot. It is a cruelty that I didn't even know existed and now they're telling me Julia could have it.


Oh and don't forget DOWNS. Like, Downs figures aren't as good as they were either - but hell, I'm barely even PHASED by that in the face of the other.




So I got off the phone and I sobbed and sobbed and I called my husband hysterical and I sobbed some more and I just sat there.....I felt adrift. Like I'd been cast out of the lifeboat and no one else was in sight.




And then I got mad.




If this was so fucking dangerous WHY didn't Dr Bedside Manner suggest amniocentesis immediately? I called their office back, still hysterical, and DEMANDED an amnio. I wanted it YESTERDAY. They put me through to a genetic counselor who I was probably not that nice to but I was fairly busy sobbing and screeching and telling her I HAVE TO KNOW I WANT AN AMNIO RIGHT NOW.




So they made it happen, for Monday.




And I was still hysterical. I couldn't think all day yesterday, I was in a blind panic and felt like everything was just over. Done. I didn't sleep right, I had nightmares all night and I frankly faced today fairly numbly.




So today I called my regular OB and told them I was cancelling my appt for next week, and that I'd reschedule after I got the results of my amnio. I just couldn't take going to that office, seeing all those big bellies and smiling faces........and knowing that my baby might never breathe. Of course, in the course of that conversation I again began sobbing and hitching in what I can best describe as an undignified pregnant woman with raging hormones trying to sound rational and in control.




It SO did not work. They immediately put me through to my nurse, who told me my OB was in surgery but he'll call me tomorrow. And to calm down. Duh.




So then, I called my high risk OB (yeah I have TWO, don't be jealous.). I explained that I wanted answers, I wanted to understand my scores and if they were integrated scores or individual scores and also - I wanted to know WHY they changed so much.




Dr. Supersweet and Understanding called me back.




The firs thing he said was, "You do realize that your odds, despite having worsened, are still better than double those for your age group?" Which - I swear to you the other doctor told me the OPPOSITE. I began to calm down. Then he walked me through why he's not immediately concerned about Trisomy 18.......he said it's fairly pronounced, and while he can't PROMISE, he sees nothing on ANY of my ultrasounds that indicates she has any of those birth defects - which are physical and just tragic. He said, reiterating what I have already heard, that on ultrasound, she's looking very good.





He also said that he understood that I wanted an amnio, that not knowing is very taxing and hard when you have all these hormones raging - and an amnio can provide reassurance that nothing is wrong or define what IS wrong, if something is.





I got off the phone feeling better.....able to breathe. I made an appointment with a genetic counselor because he asked me to and said he felt it was important so FINE. Then after that we'll do amnio and results will come back within 2 weeks, I guess depends on how long it takes them to match up and count chromosomes. If I remember properly from high school it takes a while to figure out which are exact matches. :)





Yesterday, I thought the world had ended for Julia and that I was going to have to decide to carry her to term just to watch her die, or make the ultimate decision and grieve sooner rather than later.



Today I feel better. I'm still fairly emotionally raw. But I'm better. And my husband made me laugh hysterically several times this evening.....so I think that is a good sign.


I leave you with, something to make you smile.

Hi This is Dr Jones, I've Got Some Really Bad News

This, in my opinion is not the way to start any conversation with a pregnant woman that doesn't end with "And your baby is dead."


I went last Friday for my next round of sequential screening - and they RAVED about the baby on ultrasound. She looks great, everything looks great, and I quote "WE HAVE NO CONCERNS".


Then I get the call from Mr. Bedside Manner. Oh excuse me, DOCTOR Bedside Manner.


I hold my breathe while he talks. "Well all of your risk factors have shot way up, we're especially concerned about your trisomy 18 risk factor which has shot to 1:85. We are going to need you to come in next week for more ultrasound and additional screening tests."


And I sob.


Trisomy 18, if you don't want to click on the link, means death for your baby. It's an extra chromosome on pair #18 and it includes horrendous birth defects and odds so bad - I'm amazed everyone doesn't terminate on the spot. It is a cruelty that I didn't even know existed and now they're telling me Julia could have it.


Oh and don't forget DOWNS. Like, Downs figures aren't as good as they were either - but hell, I'm barely even PHASED by that in the face of the other.




So I got off the phone and I sobbed and sobbed and I called my husband hysterical and I sobbed some more and I just sat there.....I felt adrift. Like I'd been cast out of the lifeboat and no one else was in sight.




And then I got mad.




If this was so fucking dangerous WHY didn't Dr Bedside Manner suggest amniocentesis immediately? I called their office back, still hysterical, and DEMANDED an amnio. I wanted it YESTERDAY. They put me through to a genetic counselor who I was probably not that nice to but I was fairly busy sobbing and screeching and telling her I HAVE TO KNOW I WANT AN AMNIO RIGHT NOW.




So they made it happen, for Monday.




And I was still hysterical. I couldn't think all day yesterday, I was in a blind panic and felt like everything was just over. Done. I didn't sleep right, I had nightmares all night and I frankly faced today fairly numbly.




So today I called my regular OB and told them I was cancelling my appt for next week, and that I'd reschedule after I got the results of my amnio. I just couldn't take going to that office, seeing all those big bellies and smiling faces........and knowing that my baby might never breathe. Of course, in the course of that conversation I again began sobbing and hitching in what I can best describe as an undignified pregnant woman with raging hormones trying to sound rational and in control.




It SO did not work. They immediately put me through to my nurse, who told me my OB was in surgery but he'll call me tomorrow. And to calm down. Duh.




So then, I called my high risk OB (yeah I have TWO, don't be jealous.). I explained that I wanted answers, I wanted to understand my scores and if they were integrated scores or individual scores and also - I wanted to know WHY they changed so much.




Dr. Supersweet and Understanding called me back.




The firs thing he said was, "You do realize that your odds, despite having worsened, are still better than double those for your age group?" Which - I swear to you the other doctor told me the OPPOSITE. I began to calm down. Then he walked me through why he's not immediately concerned about Trisomy 18.......he said it's fairly pronounced, and while he can't PROMISE, he sees nothing on ANY of my ultrasounds that indicates she has any of those birth defects - which are physical and just tragic. He said, reiterating what I have already heard, that on ultrasound, she's looking very good.





He also said that he understood that I wanted an amnio, that not knowing is very taxing and hard when you have all these hormones raging - and an amnio can provide reassurance that nothing is wrong or define what IS wrong, if something is.





I got off the phone feeling better.....able to breathe. I made an appointment with a genetic counselor because he asked me to and said he felt it was important so FINE. Then after that we'll do amnio and results will come back within 2 weeks, I guess depends on how long it takes them to match up and count chromosomes. If I remember properly from high school it takes a while to figure out which are exact matches. :)





Yesterday, I thought the world had ended for Julia and that I was going to have to decide to carry her to term just to watch her die, or make the ultimate decision and grieve sooner rather than later.



Today I feel better. I'm still fairly emotionally raw. But I'm better. And my husband made me laugh hysterically several times this evening.....so I think that is a good sign.


I leave you with, something to make you smile.

But I Don't See Them That Way

I'm probably too sensitive about the twins. Would it stun you to know that when I am with them, large stretches of time will pass where I forget that they aren't "typical"? To me, a lot of the time, they're just babies.
Great big, five year old babies.
We were at the grocery, pushing our two five year old babies around in carts, buying soda pop, and the 7 year old was babbling on about Star Wars and I saw a woman looking at the twins with a doting smile. She catches my eye and says "Oh how old are they?" I answer that they are five.
And then she says "Are they on the Spectrum?"
This is when my heart wrenches out of my body.

Yes, I tell her. They are both autistic. She tells me they are so cute, and we talk about their degree of disability. I learn she also has a son on the spectrum AND she teaches autistic children at a nearby school. She meant no harm or disrespect. She was very kind.

But I hate it that people notice.

I hate it for THEM and for me. I don't want you to see their disability. I want you to see that they hug and kiss and know all their abc's and numbers and that they CAN INDEED talk....they just don't quite understand it. I want you to see them greet me with total enthusiam when I walk in the door and the way they snuggle into my arms if they are sleepy during family time at the end of the night.

I want you to hear them laugh hysterically at Grover and at the Teletubbies.
THEY ARE JUST CHILDREN. They are not their disability.

At a recent meeting of our local support group - a parent described finding out their child was autistic as "losing" that child. At first I felt I understood - but in fact, all we lose is our IDEA of what they will be. When in fact, we never knew to start with what would become of them.

Our children are not who we think they are and will not be who we think they will be whether typical or not. And even though my beautiful twins were diagnosed with Autism this year....I didn't lose them. All this means is that their possibilities shifted - but not dissolved.

I don't see them as disabled. I just see them as who they are. I have to wait to find out who they will be.

But I Don't See Them That Way

I'm probably too sensitive about the twins. Would it stun you to know that when I am with them, large stretches of time will pass where I forget that they aren't "typical"? To me, a lot of the time, they're just babies.
Great big, five year old babies.
We were at the grocery, pushing our two five year old babies around in carts, buying soda pop, and the 7 year old was babbling on about Star Wars and I saw a woman looking at the twins with a doting smile. She catches my eye and says "Oh how old are they?" I answer that they are five.
And then she says "Are they on the Spectrum?"
This is when my heart wrenches out of my body.

Yes, I tell her. They are both autistic. She tells me they are so cute, and we talk about their degree of disability. I learn she also has a son on the spectrum AND she teaches autistic children at a nearby school. She meant no harm or disrespect. She was very kind.

But I hate it that people notice.

I hate it for THEM and for me. I don't want you to see their disability. I want you to see that they hug and kiss and know all their abc's and numbers and that they CAN INDEED talk....they just don't quite understand it. I want you to see them greet me with total enthusiam when I walk in the door and the way they snuggle into my arms if they are sleepy during family time at the end of the night.

I want you to hear them laugh hysterically at Grover and at the Teletubbies.
THEY ARE JUST CHILDREN. They are not their disability.

At a recent meeting of our local support group - a parent described finding out their child was autistic as "losing" that child. At first I felt I understood - but in fact, all we lose is our IDEA of what they will be. When in fact, we never knew to start with what would become of them.

Our children are not who we think they are and will not be who we think they will be whether typical or not. And even though my beautiful twins were diagnosed with Autism this year....I didn't lose them. All this means is that their possibilities shifted - but not dissolved.

I don't see them as disabled. I just see them as who they are. I have to wait to find out who they will be.