Sometimes all you can do is yell at the top of your lungs - THIS IS NOT FAIR! THIS SUCKS! P.E.R.I.O.D. Sometimes you need to scream and cry and stomp your feet and just be pissed off at life. Sometimes even though you know that there are good things, the bad just consumes you. Sometimes it's just effing hard to get through it all and understand just why things happen. And sometimes you need to do this to cope. And move forward.
It seems these thoughts abound for us lately. Between little Matthew who has been fighting a good and courageous battle against cancer for two and a half years. To Hannah's dad who passed so quickly of cancer this year. To my brother who just had four strokes. Three in one day and then a massive one a few days later. The cause eluded the doctors for a week until they found the narrowed artery leading to his brain that was causing it (at the third hospital he was transferred to). The neurologist told us yesterday that it is very rare that anyone has this and it is the cause of a stroke. As a matter of fact, he said Mark was 1 in 800,000. One in 800,000. WTF?!
He lived, so we are grateful. They finally found the source and feel confident that was it and the strokes will stop, so we are grateful. They put a stint in and he made it past the critical 24 hour mark following that surgery, so we are grateful. But he lost almost all his vision. He has none in his left eye and only a tiny bit in his right, mostly peripheral. The neurologist said this was as good as it would get, there was too much damage. He's only 38. He has not had an easy life to this point, with so many ups and downs and struggles. And now his entire life is altered forever. Everything will change, just as it had been starting to get better. It's just one thing after the other. Why? WHY?!!!
I understand the intellectual side of the good things and how, though altered and not what he dreamed, things can still be okay. I get it. But right now, it's emotional and I am sad, and mad, and pissed off, and my heart is broken for him.
I don't think he knows yet because although he was there when the doctor said it and seemed to react with silence and some tears, he didn't talk about it afterwards. He has the common stroke short term memory loss. So, many things that happen day to day he does not remember from one moment to the next. Like his stint surgery, or what was hooked to his arm, or that he ate, or why something kept inflating around his arm, or asking and telling us the same things over and over. But that will go away we are told. And when it does, when he gets this news, my heart is going to break all over again.
Because, sometimes, it's just NOT FAIR! P.E.R.I.O.D.
Sunday, January 31, 2010
Tuesday, January 26, 2010
Just a giggle...
This weekend Ethan and I decided to make pumpkin bread. He was very excited to help. So excited, in fact, that when I sent him to the bathroom to wash his hands he was in and out within 10 seconds. We're talking soap on, rinse off, dry, done... maybe it was more like five seconds. Regardless, not long enough to get your hands clean before you start to making food.
As I ran up to check on the nap boycotting, getting into everything twins, I sent Ethan back to the bathroom to wash his hands well. I reminded him that you need to sing the happy birthday song twice while rubbing soap on your hands, then rinse. When I came back downstairs Ethan was still in the bathroom washing his hands. He was singing the birthday song. As I walked by the door, I heard something that made me stop. Then I backed up and listened to his song outside the closed bathroom door as he went throught he birthday song again, with this line: "...happy birthday dear bathroom..." As I giggled I thought, okay, well... that does make sense... in a way.
Ahhh... my Ethan...
As I ran up to check on the nap boycotting, getting into everything twins, I sent Ethan back to the bathroom to wash his hands well. I reminded him that you need to sing the happy birthday song twice while rubbing soap on your hands, then rinse. When I came back downstairs Ethan was still in the bathroom washing his hands. He was singing the birthday song. As I walked by the door, I heard something that made me stop. Then I backed up and listened to his song outside the closed bathroom door as he went throught he birthday song again, with this line: "...happy birthday dear bathroom..." As I giggled I thought, okay, well... that does make sense... in a way.
Ahhh... my Ethan...
Monday, January 25, 2010
First you say it, then you do it
Anyone remember the old 1980's Bill Cosby stand-up days? In Bill Cosby Himself, he had a story from which a famous (at least I remember it) quote came from: "First you say it, then you do it." I don't exactly remember what the event was that he was referring to, but I know of the feeling. In fact, I had one last week.
I was visiting a power plant for a work, since power generation is one of our targeted markets and I am on the team. It was not at all what I thought. Let's just say I didn't dress nearly appropriate enough for such a trip, as it was SO not even close to what I thought (nor anyone with me thought). As it turns out it was a 1940's built plant that has stayed in the 40's. I am talking decor, controls, dirt and all. This particular plant is a peaking plant which means it's only utilized during peak times - really hot or really cold. It was, fortunately, neither when we visited so it was relatively quiet.
With my hard hat, safety glasses,Karhart jacket good wool coat and steel toe shoes leather heeled boots (what? they would have worked in any of our greasy smelly metal cutting plants - who knew this would be worse?), I followed the plant manager into this place straight out of the old movies. The inside was dark, covered... I am talking a layer of coal ash completely covered everything square foot of this place... and just plain scary. Everything was 1940's inside... no joking... okay there were some jokes about it (seriously it was crazy how technology was never upgraded). It was also a little too Freddy Kruger basement like for me, just between you and me that is. The plant manager proceeded to lead us up to the seventh floor to look at the stacks. Simple enough right? Up the stairs I walked, the narrow, non-lit dark coal ash covered shallow stepped stairs, just longing to hold onto the rail (I'm a rail holding girl... always) but couldn't as it was literally covered in black coal ash. I managed to make it up without tripping, falling or anything that would draw to attention to me - the lone woman - which is a good thing in an industry like mine.
Then it happened... the plant manager opened the door and stepped outside leading all my co-workers onto the ROOF of the plant. Did I ever mention my mild fear of heights? Okay, it's a roof right - I mean how bad could that be? I'll tell you. The floor from the door on out was METAL GRATE. Large holed metal grate (as in even my somewhat chunky heels could get stuck in it) and oh right, it was also see-freaking-through!). Did I mention it was the seventh floor? Not knowing this was going to be the case when I walked out, I looked straight down (in shock) and my mild acrophobia became major within one fraction of a second.
And that folks is a "first you say it, then you do it" event.
Though there was some momentary attention on me when a co-worker looked back and saw my face (I kept the words in my head - I'm trained enough to maintain some composure no matter the circumstance) and my white knuckled grip as I tippy toed across the narrow and very long catwalk and then climbed flight of stairs (yes, still metal grates), I quickly diverted him. There were a few pockets of solid floor up there between the long catwalks separating the building sections, which helped me calm my nerves some and I did manage to learn some things about this really old power plant and the industry in general. I never did, however, completely recover. When we got inside and walked back down the seven floors of dark non-lit narrow and shallow coal ash covered stairs, I put a kleenex (which I luckily had in my pocket) in each hand and gripped the rails the whole way down. I also made sure I was the last person... again... not wanting to show my real fear or draw attention. I was filthy, but I didn't even care. I lived to tell about it.
I later found out, from my male khaki pant, good coat, office loafer wearing co-workers that I was not the only one shocked by the plant and feeling a bit unprepared. I may, however, have been the only person to actually live Bill Cosby's quote though.
Sigh... live, learn and laugh at yourself.
I was visiting a power plant for a work, since power generation is one of our targeted markets and I am on the team. It was not at all what I thought. Let's just say I didn't dress nearly appropriate enough for such a trip, as it was SO not even close to what I thought (nor anyone with me thought). As it turns out it was a 1940's built plant that has stayed in the 40's. I am talking decor, controls, dirt and all. This particular plant is a peaking plant which means it's only utilized during peak times - really hot or really cold. It was, fortunately, neither when we visited so it was relatively quiet.
With my hard hat, safety glasses,
Then it happened... the plant manager opened the door and stepped outside leading all my co-workers onto the ROOF of the plant. Did I ever mention my mild fear of heights? Okay, it's a roof right - I mean how bad could that be? I'll tell you. The floor from the door on out was METAL GRATE. Large holed metal grate (as in even my somewhat chunky heels could get stuck in it) and oh right, it was also see-freaking-through!). Did I mention it was the seventh floor? Not knowing this was going to be the case when I walked out, I looked straight down (in shock) and my mild acrophobia became major within one fraction of a second.
And that folks is a "first you say it, then you do it" event.
Though there was some momentary attention on me when a co-worker looked back and saw my face (I kept the words in my head - I'm trained enough to maintain some composure no matter the circumstance) and my white knuckled grip as I tippy toed across the narrow and very long catwalk and then climbed flight of stairs (yes, still metal grates), I quickly diverted him. There were a few pockets of solid floor up there between the long catwalks separating the building sections, which helped me calm my nerves some and I did manage to learn some things about this really old power plant and the industry in general. I never did, however, completely recover. When we got inside and walked back down the seven floors of dark non-lit narrow and shallow coal ash covered stairs, I put a kleenex (which I luckily had in my pocket) in each hand and gripped the rails the whole way down. I also made sure I was the last person... again... not wanting to show my real fear or draw attention. I was filthy, but I didn't even care. I lived to tell about it.
I later found out, from my male khaki pant, good coat, office loafer wearing co-workers that I was not the only one shocked by the plant and feeling a bit unprepared. I may, however, have been the only person to actually live Bill Cosby's quote though.
Sigh... live, learn and laugh at yourself.
Sunday, January 24, 2010
The plan that backfired
On Saturday, we ventured to an indoor (and very cool) play place at a local church. The hours are very limited, so we were excited to see they were open a couple hours on Saturday mornings. We were excited for a few reasons. One, we want the kids to have fun and there is only so much you can do in the winter. Two, because of those few things, there's only so much that doesn't require an entire day pilgrimage. Three, because some of the simpler trips involve far too many germs (this place is relatively clean and doesn't get the same traffic as many other similar places). Four, it is FREE. Five, it is large so there is room for lots of fun but not too large so as we could loose one (seriously, that is a possibility, as quick as they are) and it has a door to confine them regardless. Six, and probably the main reason, because we wanted to wear out their little rear ends so they all three would take a nap, thus allowing mom and dad much needed time to get something... ANYTHING... done.
The boys loved it. For an hour and a half, they ran, they climbed (the structure had at least four levels), they laughed, they yelled, they ran and climbed some more, they even colored (they had tables with crayons and paper out), they had a great time. We ran, we laughed, we climbed (okay only Steve climbed for one rescue mission) and we had a great time. At the end, we were ALL worn out.
The boys loved it. For an hour and a half, they ran, they climbed (the structure had at least four levels), they laughed, they yelled, they ran and climbed some more, they even colored (they had tables with crayons and paper out), they had a great time. We ran, we laughed, we climbed (okay only Steve climbed for one rescue mission) and we had a great time. At the end, we were ALL worn out.
Afterwards, we ate lunch and promptly put them down for a nap. Then they ran, they climbed, they laughed, they yelled, and they ran and climbed some more (thankfully no coloring happened considering). Yes, no napping. We tried for over an hour to convince them that they needed to sleep. They would get quiet and then it started all over.
Needless to say, we got nothing done around the house (aside from more exercise running up and down the stairs and frazzled nerves). On the flip side, the boys had a fun morning. One out of two ain't bad I guess.
Saturday, January 16, 2010
He's a card carrier now...
Ethan got his first library card today. I know, I know... he should have had one already. It's not that he hasn't been to the library a billion times already. Sometimes time is not on our side, or maybe time management, or more likely my memory and mind (which I partially lost during my pregnancy with Ethan, with the remainder going bye, bye after the twins... does it come back... EVER?!). But he has one now and carried it proudly all day today through all our errands, never parting with it. And of course, we checked out a few new chapter books which he looked up on the on-line catalog. He told me tonight, "now I can get as many books as I want, whenever I want, all the time!"
Thursday, January 14, 2010
Book, thy name is love.
I have a confession. I LOVE books. I honestly don't believe you can have enough books. Nor read enough. And I have a hard time saying no to books. I do come by this honestly though. We had to enroll Grandma Dee in a twelve step program because of her love of books... and bookstores. (just kidding... but we did have to steer her away from them many a time as our house and her office overfloweth... you know it mom!) Well, it seems we have breed little book lovers as well.
no, this isn't a real photo from one of our houses
I've known Ethan had the book obsession when he was very young and spent tons of time in front of his bookcase looking through his books, pouring over books in the family room, always sat intently to listen to books and knew the names of his billion books before he was two years old. By the time he was six months old (no kidding), he wanted say in which handful of books we read each night. Not that he didn't like some, more that he knew what he was in the mood for apparently and he made it very clear. He picked them out. His daycare teachers back then always told me he was the only child in the infant room that would sit still and listen and then want more. Same in the toddler room, and toddlers don't sit still for much at daycare or anywhere. Maybe the best example of his love of books came when we were potty training him. Our 'potty prize bag' had books in it. Lots of them. That Ethan would droll over... like most addicts... he HAD to have them. So, my little two year old son realized that he could eek out teeny tiny little poos and get a book, read it, then eek out another teeny tiny little poo and get another book and so on. Yes, he got us on a technicality. Now if that doesn't spell book addict, I am not sure what does.
Both twins love books, but Oliver seems more so than Collin. Though they both sit and listen whenever you read, they love books. Of the few words that Collin can actually say, 'book' is one of them. With the K sound and all. Now that is love. And if Oliver is not playing 'mini me' to Ethan, you can bet he is sitting with a pile of books around him. And you know what? I secretly (okay, not so secretly now) think that is wonderful!
Ethan's latest thing is chapter books. All chapter books. Tons of chapter books. It started with one he got as a gift late summer, which honestly I thought he was too young for yet (it was a 2nd grade book). After all, I'm not talking about books that have pictures. I was wrong. Very wrong. He got very excited after we read a chapter and wondered all day about what would happen the next day when we read a few more chapters. He would talk about it when I got home and tell me how excited he was to read more. He would page ahead to look at the few small sketched pictures (usually one for every four or five pages) and try to figure it out. He is intently interested in the story line - what's to come next, recanting what happened, predicting the next chapter, recalling other books in the series that we've read and how they related to this particular story, etc. He begs me to read 'just one more chapter' (and sometimes I do because I am interested too!). We plow through each of these long books in a few days and when we are done, he has already decided in his head which is next as he pours over all of them constantly. Fortunately, Scholastic book order forms just started up again this fall at his pre-school, because we are coming to the end of his recent haul from birthday and Christmas. So, guess who is back looking through book order forms? Because, it's true, he's got the book bug too. He loves to hold them, smell them, look through them, study them and read them over and over.
Ahhh, books. What a great thing.
Friday, January 8, 2010
Blogiversary!
Wow! I can't believe it... it's The Moores Six blogiversary! Exactly a year ago today, I launched The Moores Six. Time flies, as it seems like just yesterday.
I hope everyone has enjoyed the first year, I know I have enjoyed sharing. This is my scrapbook, our family chronicles, my fun 'me time' and becoming so much more as time goes on. Thank you for sharing journey with us!
I hope everyone has enjoyed the first year, I know I have enjoyed sharing. This is my scrapbook, our family chronicles, my fun 'me time' and becoming so much more as time goes on. Thank you for sharing journey with us!
Thursday, January 7, 2010
I like big lips and I cannot lie
Baby got lips.
(okay, if no one else, sometimes I just need to make myself laugh and maybe age myself with a silly rendition of an early '90's song.)
In the meantime... Baby got lips...
(okay, if no one else, sometimes I just need to make myself laugh and maybe age myself with a silly rendition of an early '90's song.)
We have many different mouth driven noise making devices for Collin. The ones above are big ol' lips with a whistle device in them. You have to blow really hard to get the shrill-like sound it makes, but it is so fun that Collin loves to try. A lot of the time, however, he ends up making with his voice the sound he thinks the device will make because he has a really hard time either getting the right mouth grip on the item or blowing hard enough to make the sound... or both. His mouth muscles aren't that strong.
The plethora of whistles, blowers, recorders, etc. that we have all help develop the muscles in Collin's mouth. They help him learn to use these muscles in different ways that will help him when it comes to learning the process of saying words. This is one of the many things therapists (including ours) recommend for Apraxic children. What's nice is it is fun, which is motivating, too. Collin does struggle though to get a sound out of a lot of the devices, whereas Oliver and Ethan make our ears hurt. He continues to try though and that's all we can ask.
In the meantime... Baby got lips...
Wednesday, January 6, 2010
Tuesday, January 5, 2010
Playing with Photoshop
I found a website a little while ago of a self taught photographer and on it she had some Photoshop actions that you could download, which I did. Now, some aren't working and I am not sure if it is the version of Photoshop I have or what. Some, however, do work and they really help a novice like me. She also walks you through some things step by step. I have only read a tiny bit of her website and know I need to find the time to dive in and read it all... and re-read and practice and practice. Her photography is really good just straight out of the camera and even more amazing once she has enhanced it.
The last couple days, I tried out some of the actions and skills on a few of my recent favorite photos (read: have been up way, way too late messing with them). Now, I should say I am not a complete virgin to Photoshop, but the work I do with it at work on product is much different than on people (plus my use of it is very minimal). Regardless, some of the things were really easy, some will take a lot of practice and 'an eye' (which between you and me, I'm not sure I have that said 'eye'). Below are some of the photos I messed with, which you will see that I altered them each to varying degrees. I am curious to know if anyone thinks they look better or if they look unnatural. If you view it large you can see my lack of blending which I still have to figure out how to do. I think...at the moment at least... I like them better. Maybe I just need to have them printed to see how they really look (something I need to do anyhow as it has been ages since I printed anything) and then know how much more of the finite details I need to work on (like the blending).
What do you think?
Ethan sticking his face in front of a blower at COSI.
Original:
Cropped, colored black and white and tried to blur Steve in the background:
The last couple days, I tried out some of the actions and skills on a few of my recent favorite photos (read: have been up way, way too late messing with them). Now, I should say I am not a complete virgin to Photoshop, but the work I do with it at work on product is much different than on people (plus my use of it is very minimal). Regardless, some of the things were really easy, some will take a lot of practice and 'an eye' (which between you and me, I'm not sure I have that said 'eye'). Below are some of the photos I messed with, which you will see that I altered them each to varying degrees. I am curious to know if anyone thinks they look better or if they look unnatural. If you view it large you can see my lack of blending which I still have to figure out how to do. I think...at the moment at least... I like them better. Maybe I just need to have them printed to see how they really look (something I need to do anyhow as it has been ages since I printed anything) and then know how much more of the finite details I need to work on (like the blending).
What do you think?
Ethan sticking his face in front of a blower at COSI.
Original:
Cropped, colored black and white and tried to blur Steve in the background:
Same (with minor color changes) but with Steve edited out and background blurred more:
Oliver intently coloring.
Original:
Oliver intently coloring.
Original:
Slight crop, warmed color, crispier eyes and blurred the background (walls and back of highchair) - note that the blurring of his hands and arms is natural blur as I wasn't using a flash and he was moving fast:
Collin laying on the concrete floor in a picnic pavilion which was filthy dirty and hay on it.
Collin laying on the concrete floor in a picnic pavilion which was filthy dirty and hay on it.
Monday, January 4, 2010
Because, it's not 'just a delay'
With the exception of a couple posts, I really gloss over Collin's apraxia. It's not on purpose though. I’ve been thinking about it, for many, many reasons. It started a couple days ago when our lunchtime music ended and Collin was trying so hard to tell me that - I assume at least. I really don't know what he was saying, but he was trying so very intently. He said "heee, haaa, uhhhh, heeee, aaaa..." and waved his hands in the direction of the music source (when he is trying to tell you something, it’s usually with his whole body like this). I said, "are you telling me the music stopped?" and he said: "no! haaaa, uhhhh, aaa, haaa, ahhhh..." I asked several questions and he continued to try intently with much passion to tell me what it was he was trying to tell me, but I never really figured out what he was saying. This is a common frequent daily occurrence. Very, very common. He is trying very hard to express himself, but he doesn't know how to form the words. He does, however, clearly know what he wants to say in his head, as he is a very smart little boy. How frustrating that must be.
When I get him out of the highchair after dinner, we have a little thing we do. Basically I say: "Ready," wait for him to repeat that, then I count 1, 2, 3 and say go, waiting after each for him to repeat. After 'go!', I bring him to the floor quickly. He loves it, very motivating (to talk) and fun for him. Every night for weeks we have done this. He has the 'ready' down pretty well (at least you know what it is since it follows me saying it, but it doesn’t sound like ‘ready’) and he is pretty good with saying 'one' (sounds like 'wooon'), but the 'two' and 'three' he cannot do. He watches my mouth intently, I break it into sounds, and finally just try to get a single 't' sound from him, but the T's are just so hard for him. He studies me, but doesn't even try the word. He will try the 't' sound, but it's far from 't.' His brain and mouth just aren't working together. He does say 'go' now, but it's more of an 'hoe' sound.
I was reading a fellow multiple mom's blog the other day and I thought of this and Collin again. Her twin sons have SPD and they struggle with many things due to it. Most people just write off their behaviors or episodes as something else - tired toddler, bratty child, a crier, spoiled, whatever. But that is not what it is, that is not why they struggle at times and it's just unfair to label them incorrectly. Just like this is not 'just a delay' for Collin. He won't just one day realize he can talk and start talking with great articulation (in fact the next issue once words finally start flowing better is sequencing of words) and all will be well in his world. This isn't a delay, it's a disorder. It is a neurological motor planning disorder. I don't say this for you to feel bad for him or for it to sound like I think it's the end of the world and that he will never talk. That is definitely not it at all and I do not remotely believe it is the end of the world, as I know all too well of other horrible diseases in children that ARE in fact the end of the world. However, I still have my pockets of feeling sad, frustrated, worried, a little scared, and many other things regarding Collin's apraxia at times. I am his mom. Don't get me wrong, I am not consumed by it nor do I focus on it constantly. I believe everything will eventually be okay, of course. But I am realistic and know it won’t be any time soon. Regardless, I am allowed to feel all those things… I am.
Sometimes, like the other twin mom blogger, it frustrates me when people gloss over Collin's disorder. Not that I want to focus on it or define him by it. That's definitely not it at all. It's more that when he has an accomplishment, I want to stand and cheer (and have others who are present do the same – it’s quite the motivator to him) - this is hard work for him - new spontaneous words ARE huge accomplishments. And when he has a hard time expressing or is having many frustrations verbally, I want to share as well. I can never tell if people say certain things to me because they are trying to make me feel better or if they don't believe that he has a disorder (but instead just a delay) or what. I really don't know. I guess it all comes down to the fact that until you have the experience yourself, it’s hard to know what it’s like. It’s hard to understand what it is and the true struggle or implication. It’s hard to know what to say.
Because I share this blog with my fellow multiple moms, I have decided to talk more about Collin’s apraxia. One, to chronicle his journey for him (and me). Two, to share the ups and downs (because sometimes I need to do this). Three, because there might be another mom who reads this who has a child they suspect has this disorder or know has this disorder and if so, there is comfort in knowledge, other’s experiences and finding a ‘friend’ in the same boat.
Just two weeks ago when I picked Ethan up from school on the first day of my vacation, I found out that there is an Apraxic child in his room. I have her mom’s information and got to talk to her briefly before the twins melted down. I felt comforted by this and am excited to find out more about their journey. She indicated her daughter was in speech therapy three four hour days a week, at Ethan’s pre-school two four hour days and then in special needs pre-school the other three days and that she had a lot to share with me. She also gave me that knowing hug and said “I understand how you feel” the moment she found out we shared this common disorder among our children, without me even saying a word regarding anything. She just knew based on her own journey and how she felt in the beginning.
The new year has me, as always, thinking about many things and making lofty goals. So, with that in mind and the desire to document this journey more, as well as share more with other moms and my own family and friends, you’ll probably see more posts on apraxia. And maybe some other things too.
Thank you for reading my posts (especially if you made it all the way through this one), thank you for your support and your comments/emails and thank you for jumping on the ride with us!
When I get him out of the highchair after dinner, we have a little thing we do. Basically I say: "Ready," wait for him to repeat that, then I count 1, 2, 3 and say go, waiting after each for him to repeat. After 'go!', I bring him to the floor quickly. He loves it, very motivating (to talk) and fun for him. Every night for weeks we have done this. He has the 'ready' down pretty well (at least you know what it is since it follows me saying it, but it doesn’t sound like ‘ready’) and he is pretty good with saying 'one' (sounds like 'wooon'), but the 'two' and 'three' he cannot do. He watches my mouth intently, I break it into sounds, and finally just try to get a single 't' sound from him, but the T's are just so hard for him. He studies me, but doesn't even try the word. He will try the 't' sound, but it's far from 't.' His brain and mouth just aren't working together. He does say 'go' now, but it's more of an 'hoe' sound.
I was reading a fellow multiple mom's blog the other day and I thought of this and Collin again. Her twin sons have SPD and they struggle with many things due to it. Most people just write off their behaviors or episodes as something else - tired toddler, bratty child, a crier, spoiled, whatever. But that is not what it is, that is not why they struggle at times and it's just unfair to label them incorrectly. Just like this is not 'just a delay' for Collin. He won't just one day realize he can talk and start talking with great articulation (in fact the next issue once words finally start flowing better is sequencing of words) and all will be well in his world. This isn't a delay, it's a disorder. It is a neurological motor planning disorder. I don't say this for you to feel bad for him or for it to sound like I think it's the end of the world and that he will never talk. That is definitely not it at all and I do not remotely believe it is the end of the world, as I know all too well of other horrible diseases in children that ARE in fact the end of the world. However, I still have my pockets of feeling sad, frustrated, worried, a little scared, and many other things regarding Collin's apraxia at times. I am his mom. Don't get me wrong, I am not consumed by it nor do I focus on it constantly. I believe everything will eventually be okay, of course. But I am realistic and know it won’t be any time soon. Regardless, I am allowed to feel all those things… I am.
Sometimes, like the other twin mom blogger, it frustrates me when people gloss over Collin's disorder. Not that I want to focus on it or define him by it. That's definitely not it at all. It's more that when he has an accomplishment, I want to stand and cheer (and have others who are present do the same – it’s quite the motivator to him) - this is hard work for him - new spontaneous words ARE huge accomplishments. And when he has a hard time expressing or is having many frustrations verbally, I want to share as well. I can never tell if people say certain things to me because they are trying to make me feel better or if they don't believe that he has a disorder (but instead just a delay) or what. I really don't know. I guess it all comes down to the fact that until you have the experience yourself, it’s hard to know what it’s like. It’s hard to understand what it is and the true struggle or implication. It’s hard to know what to say.
Because I share this blog with my fellow multiple moms, I have decided to talk more about Collin’s apraxia. One, to chronicle his journey for him (and me). Two, to share the ups and downs (because sometimes I need to do this). Three, because there might be another mom who reads this who has a child they suspect has this disorder or know has this disorder and if so, there is comfort in knowledge, other’s experiences and finding a ‘friend’ in the same boat.
Just two weeks ago when I picked Ethan up from school on the first day of my vacation, I found out that there is an Apraxic child in his room. I have her mom’s information and got to talk to her briefly before the twins melted down. I felt comforted by this and am excited to find out more about their journey. She indicated her daughter was in speech therapy three four hour days a week, at Ethan’s pre-school two four hour days and then in special needs pre-school the other three days and that she had a lot to share with me. She also gave me that knowing hug and said “I understand how you feel” the moment she found out we shared this common disorder among our children, without me even saying a word regarding anything. She just knew based on her own journey and how she felt in the beginning.
The new year has me, as always, thinking about many things and making lofty goals. So, with that in mind and the desire to document this journey more, as well as share more with other moms and my own family and friends, you’ll probably see more posts on apraxia. And maybe some other things too.
Thank you for reading my posts (especially if you made it all the way through this one), thank you for your support and your comments/emails and thank you for jumping on the ride with us!
Sunday, January 3, 2010
The reluctant transition
The time had come. We knew it had to be done. We resisted. We denied. We drug our feet. We cried a little. And then we did it...
The twins are now in toddler beds. Okay, 'in' isn't exactly the right word because staying 'in' them is not really something they do. The issue was that they, now frequently, were also not staying in the cribs. At least in these the trip to the floor is shorter and less dangerous.
Steve had actually found one of these beds when Ethan was a baby, thinking it would someday be his. We never actually used it. He, unlike them, never got out of his crib. Instead, we moved him out of the crib at a little over 2 1/2 because his baby brothers were soon to come and we needed the cribs and the nursery. He, instead, went right into a whole new room and a twin bed and a lot of other new things.
When we found out we were having twins, knowing they would have to share a bedroom for some time, we kept the toddler bed assuming we could find another at some point (thanks to a fellow twin mom - I got the second). Right now, given the space and their ages, these are our best (and cheapest) option. I don't think we will redecorate their room from ABC's just yet, because I am not really sure how long they will be in these (Collin is in the 90% for height after all) and I would rather just wait until we pick a theme that they would love (they like firetrucks, but they don't love them). So, it's not Pottery Barn Kids in there, but I guess life isn't always about looks, sometimes it's about function (right Christine?).
And so the next chapter of twin fun begins... very easy access out of bed... no sleeping (as if they did before)... books everywhere... furniture bolted to the walls... hiding in closets and under beds... climbing up the walls... swinging from the curtains... meltdowns (okay, I might just be talking about us here)...
Ready or not, here we go!
Saturday, January 2, 2010
Snow! (and lessons learned)
I took the boys out in the snow a couple days ago. This is the first time this season and really the twins were not out much in it last year. Here are some things I learned:
It took me AN HOUR to get them all dressed to go out, we were out for FIVE MINUTES. No joking, they have layers of clothes on, then snow overalls, coat, hat and multiple fights...er... attempts at gloves. By the time I would get one dressed, one of the twins was undressing themselves and then running from me giggling. Or there was the all dressed and then decide it's the perfect time for their morning poo (just telling it like it is). Of course this made getting myself ready quick, I was so hot and sweaty from getting them ready that I didn't need to bundle up.
Two year old toddlers do NOT like gloves. Will not wear them no matter how tight they are put on or how cold the snow is. Mental note: get working on non removable gloves for toddlers.
Two year old toddlers will CONTINUE to touch the snow with their bare hands even after the initial painful lesson. Seriously, non removable gloves for toddlers people... any ideas?
Five year old boys will eat anything (but what I want eaten) and two year old mini me will follow suit. Ethan decided to get a mouthful of snow to eat, so of course Oliver had to follow.
When two year old toddlers are over the snow, they are OVER the snow. I needed a second person to help me get them inside and undress them as I was not near quick enough for their liking. Gave me a whole new appreciation for the Jetson's suits - remember they just came on and off automatically. Hmmm....
Five year old boys, in some respects, are a lot less high maintenance. I'm liking five so far. Ethan was a great sport about me taking the twins in after just shy of five minutes (though I did warn him we would only be out for a very short time - since they refused gloves). He stayed out and had a blast, making angels, jumping on the trampoline covered with snow, filling sand buckets with snow, etc. It was so cute to watch him. I can't believe how quickly he is growing up and what a little boy he is becoming. It makes me proud and sad at the same time. However, like I remind him, he will always be my first little baby.
It took me AN HOUR to get them all dressed to go out, we were out for FIVE MINUTES. No joking, they have layers of clothes on, then snow overalls, coat, hat and multiple fights...er... attempts at gloves. By the time I would get one dressed, one of the twins was undressing themselves and then running from me giggling. Or there was the all dressed and then decide it's the perfect time for their morning poo (just telling it like it is). Of course this made getting myself ready quick, I was so hot and sweaty from getting them ready that I didn't need to bundle up.
Two year old toddlers do NOT like gloves. Will not wear them no matter how tight they are put on or how cold the snow is. Mental note: get working on non removable gloves for toddlers.
Two year old toddlers will CONTINUE to touch the snow with their bare hands even after the initial painful lesson. Seriously, non removable gloves for toddlers people... any ideas?
Five year old boys will eat anything (but what I want eaten) and two year old mini me will follow suit. Ethan decided to get a mouthful of snow to eat, so of course Oliver had to follow.
When two year old toddlers are over the snow, they are OVER the snow. I needed a second person to help me get them inside and undress them as I was not near quick enough for their liking. Gave me a whole new appreciation for the Jetson's suits - remember they just came on and off automatically. Hmmm....
Five year old boys, in some respects, are a lot less high maintenance. I'm liking five so far. Ethan was a great sport about me taking the twins in after just shy of five minutes (though I did warn him we would only be out for a very short time - since they refused gloves). He stayed out and had a blast, making angels, jumping on the trampoline covered with snow, filling sand buckets with snow, etc. It was so cute to watch him. I can't believe how quickly he is growing up and what a little boy he is becoming. It makes me proud and sad at the same time. However, like I remind him, he will always be my first little baby.
Friday, January 1, 2010
They say...
whatever on New Year's Day you do that you'll do the whole year through. If that's the case, we'll be chasing kids all year (as if there was even a chance that wouldn't be our fate this year).
We took the boys to COSI today. They had a blast running as fast as their little legs could take them. Exploring everything and wearing huge smiles. I think if the saying were to be true, it'll be a great year for them (and I hope it is). Here are some photo highlights of our trip:
We took the boys to COSI today. They had a blast running as fast as their little legs could take them. Exploring everything and wearing huge smiles. I think if the saying were to be true, it'll be a great year for them (and I hope it is). Here are some photo highlights of our trip:
After our trip to COSI and lunch, we came home to watch football and eat our pork and sauerkraut dinner - of course the traditional New Year's day good luck meal. The bayberry candle burning was last night, for good luck. I actually forgot to put the pork in the crock pot before we left and it was too late by the time we got home late this afternoon. Steve assured me that after the year we had (namely the downs), that it didn't seem that the pork and sauerkraut really made a difference. I, however, am a creature of habit and I also didn't want to know what a year without a "good luck" meal to start it might bring. Silly, but true. I googled 'how to cook a giant pork roast in the oven fast' and moved forward with the tradition that I have done for most of my life. We toasted this year with sparkling grape juice (which only Oliver and I liked). I'm not going to lie here though, though the pork turned out really well and everything else was good too, the boys were well past their prime with the day of running and no naps. Dinner was full of melting down children, who were refusing to eat while parents shoved food into their own mouths as fast as they could so as to move forward to bath time (again, not unlike any other year).
Regardless, overall the day was a very good one. We have had a rough year on many levels. We chose not to focus on those rough spots which have consumed us lately, but instead to focus on making this a great year through growth and healing, focusing on the moment and the joys, worrying less about the truly unimportant things (and just worrying less period) and embracing all that is dear to us.
Happy New Year everyone! May yours be blessed and happy.
Happy New Year!
We let the kid's stay up to welcome in the new year. Okay, midnight was actually 7 pm at our house... shhhh. The boys all enjoyed blowing the noise makers after our countdown... so much so that it was hard to get them to stop to go to bed. As a matter of fact, the twins continued to party in their beds (I thought they would never go to sleep).
We let Ethan stay up 'extra late,' you know 'past midnight' to watch Rudolph's Shiny New Year (thanks to Uncle Ben for recording it for us). We even gave him a few treats, since it was New Year's Eve. He had some Pirate Booty (funny name for what is actually natural cheese puffs), an all natural cheddar cheese stuffed soft pretzel and a peanut butter Lindor Truffle (thank you to Great Uncle Keith and cousin Lauren for sending the HUGE chocolate tower). Guess what he ate... er... devoured first? Yep... the candy. The rest was pretty much a third eaten at best... but it was part of the fun of staying up for New Year's Eve.
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