Okay, okay. So I may be a little behind. Considering the conference I'm talking about is the one that happened in 2013, I may be more than just a little behind.
I keep running out of energy when it comes time to finish my assignment, and then when I do have the energy there seems to be at least one other person who needs my immediate attention with a problem. Now I have a quiet house (for the moment) and a full bladder (possibly too much information, but it's motivating me to get this done so I can solve my own problem).
So, the conference last year......
The second keynote speaker was Brian somebody who started a campaign called, "Mock my pants, not my sister", after reading an article in GQ magazine that implied that having Down Syndrome was a terrible thing. They still, as far as I know, have not printed a retraction or apology for their comments. (Angry fist shaking now!)
Anyway, he was inspirational, funny, encouraging and just plain old great! It was wonderful to hear about how his sister changed his life and led him to take his current job path. I'm hoping and praying that my kids will be influenced likewise to seek out jobs or opportunities to serve those that society deems not good enough.
After the opening ceremonies we had coffee and headed off to our sessions. My mom and I decided to divide and conquer with the sessions. There were a lot that I wanted to hear, but since I haven't figured out yet how to be in two places at once, I sent my mother in my stead. I took in sessions about dental issues (so excited to hear from someone who knew what she was talking about), for Mom's only (a chance to cry and identify with other moms - and meet some new friends), speech development, and managing behaviour. My Mom hit the session on music therapy and how sibling may be feeling about a sibling with DS.
It's funny. As I flip through the folder from the conference it all comes back to me. Feeling overwhelmed at all the information, and processing how it made me feel to hear that speech might take a really long time. Feeling grateful to be meeting people who had kids that were older and had been through some of the tough stuff already. Feeling like fighting to see Simon as "just Simon" in a place where he fit in, and wanting him to stand out. Seeing other kids with DS and realizing how, yes we have our challenges, but in other ways he didn't have as many challenges as I thought. I missed Elizabeth and Andrew and wished that they could have been there too.
I heard a comment once about how much information you receive, and at this other conference, there was going to be so much information it would be like trying to drink out of a fire hydrant. That pretty much summed it all up. There was so much to learn, and experience, and so many people to meet and questions to ask, that I knew I was going to miss something important, and I wanted to remember it all!
I met a young woman with DS who won some awards for her paper craft, and was selling them at the conference. It was great to see her doing that, but on the other hand, I watched and saw how much her mom pushed her to do what she needed to do. There's that fine line between wanting our kids to succeed and pushing them to do what we want, instead of what they are capable of. So, yeah, sometimes it was discouraging to meet people.
I am all over the map today! Yikes.
In summary - the conference was a life changing experience, and I do want to go back again another year. I guess if you want more information about it, you will have to ask me personally. :)
Thanks for reading,
Sara
Friday, June 6, 2014
Thursday, April 24, 2014
21 reasons my son is awesome!
First I'd like to apologize for the delay in posting. If you know me personally, you will understand why. If you only know me through the blog, then you should have picked up on the fact that I was pregnant in my last post, and I am going to assume you are smart enough to know why I have not been keeping up.
Secondly, I would like to make a note, that the font that I am using is called, "Normal". That' kind of ironic since my blog is about my son who is, by some definitions, not normal.
Anyway, back to the post.
I was washing the dishes and thinking to myself in the quiet peacefulness of evening. I was thinking about all the reasons that Simon is awesome, and I'd like to share them with you. Here we go!
1. He's my son. (That one was easy!)
2. He is four years old and can still touch his right foot to his right armpit, and his left foot to his left armpit at the same time. Try it! (Call the chiropractor first.)
3. He says exactly what he is thinking.
4. He knows sign language.
5. He will sweep the floor for me.
6. He loves his family.
7. He sees something once, and it's in his memory.
8. He shows us how strong love can be.
9. He made me wait until he was almost three years old before he decided he would walk.
10. He gets to hang out with some pretty awesome therapists.
11. He is breaking stereotypes and expectations of what people think he can do.
12. He broke some hearts and fixed them with his love.
13. He breezed through open heart surgery.
14. He dances like no one's watching. (And he has some amazing moves!)
15. He has taught me that I am stronger than I ever thought I could be.
16. He has taught me a new meaning of exhaustion.
17. He is teaching me how to be an advocate.
18. He has introduced me to strangers.
19. He has helped me make some wonderful new friends.
20. He is constantly teaching people that he will not be limited.
21. He has three copies of his twenty first chromosome, and that makes him wonderful!
For the record, I could think of many more reasons Simon is awesome, but I'll limit myself to 21. I have full intentions of continuing with part 2 of the conference at a later date. Hopefully the date will still have the year 2014 attached to it. :)
That's all for now,
Sara
Secondly, I would like to make a note, that the font that I am using is called, "Normal". That' kind of ironic since my blog is about my son who is, by some definitions, not normal.
Anyway, back to the post.
I was washing the dishes and thinking to myself in the quiet peacefulness of evening. I was thinking about all the reasons that Simon is awesome, and I'd like to share them with you. Here we go!
1. He's my son. (That one was easy!)
2. He is four years old and can still touch his right foot to his right armpit, and his left foot to his left armpit at the same time. Try it! (Call the chiropractor first.)
3. He says exactly what he is thinking.
4. He knows sign language.
5. He will sweep the floor for me.
6. He loves his family.
7. He sees something once, and it's in his memory.
8. He shows us how strong love can be.
9. He made me wait until he was almost three years old before he decided he would walk.
10. He gets to hang out with some pretty awesome therapists.
11. He is breaking stereotypes and expectations of what people think he can do.
12. He broke some hearts and fixed them with his love.
13. He breezed through open heart surgery.
14. He dances like no one's watching. (And he has some amazing moves!)
15. He has taught me that I am stronger than I ever thought I could be.
16. He has taught me a new meaning of exhaustion.
17. He is teaching me how to be an advocate.
18. He has introduced me to strangers.
19. He has helped me make some wonderful new friends.
20. He is constantly teaching people that he will not be limited.
21. He has three copies of his twenty first chromosome, and that makes him wonderful!
For the record, I could think of many more reasons Simon is awesome, but I'll limit myself to 21. I have full intentions of continuing with part 2 of the conference at a later date. Hopefully the date will still have the year 2014 attached to it. :)
That's all for now,
Sara
Tuesday, September 17, 2013
The Conference
So, I am apparently a few months behind in my posts, and that means that it is time to catch up before I forget where we have come from. I am thinking back particularly to May. In May my mom, Simon and I made a trip to Winnipeg that would change our lives! (I'm being a bit dramatic here, but really it was life-changing.)
The three of us attended the 2013 Down Syndrome Conference. I remember being super excited as we pulled out of my parents' driveway, and thinking, "I'm gonna make sure I mention this part in my blog." I was so excited for a few reasons. I was pumped to go on an adventure with my boy, and my mom where no one in our family had gone before. Sure we've done trips to Winnipeg before, and yes, Simon and I have made the trip with an extra adult who is not Andrew before, but this was different. We were going to learn specifically about Simon. He was going to be the spotlight, not just the appointment.
We have had fun at Baby Love in the past (a fun event for families with children who have Down Syndrome) and we've made contact with new people and become friends, but this was bigger. This was trailblazing where the Wiens family has never been before. (Cue Star Trek music.)
We listened to the Vinyl Cafe on the way to the city, and laughed until we cried. (That means we had a great trip.) I drove to my midwife appointment with my mom and Simon (a huge deal for a small town driver), and then dropped my mom off at my aunt's house. Simon and I settled in at our friends' place for night and we were set. Of course I had a terrible sleep because when you know you need to wake up at a certain time in order to be on time, you have to wake up ever couple of hours to make sure your alarm clock is set. Right? That and the fact that I was 7 months pregnant combined to give me a very long night. Sigh.
Simon and I got to the bus stop on time, we watched cars drive by, we rode the bus with no problem, walked downtown to the hotel where the conference was without getting sidetracked, and we were swimming.
We walked up to the hotel and I spotted (as I suspected I would) a person with Down Syndrome. She and her friends (who also have DS) were walking to the hotel talking about what they were planning to attend that day. They commented on Simon and how cute he was, and we walked into the hotel. We were surrounded. Sink or swim I was at the conference and I might cry in public. That was really one of my concerns going to the conference. I was concerned that I would cry at a strange time and people would wonder what was wrong with me. I'm not gonna lie, I tear up during some commercials, do the thought of crying because of some random event made me a bit nervous. I didn't want to be that pregnant woman sobbing in the corner. Nope, I wanted to take it all in. Learn as much as I could. I knew if I teared up I might start crying loudly and awkwardly and not be able to stop. I might miss important bits of information that could help Simon talk sooner or something like that. I had to pay attention.
We met up with my mom and then dropped Simon off at the childcare area. I think that was one of my favorite things about the conference. I didn't have to worry about chasing him around. I could sit, put my feet up and learn. Anyway...... the conference started with the opening ceremony. There were flag bearers and a conference room full of people who were there because they had children with Down Syndrome or were educators wanting to learn more about how to help our kids in schools. I fit in. It was a strange feeling to know that we were all united by this crazy chromosome, and had so much in common, and yet we were all so different. We sat at a table with a lady from England. She made the trip to Canada just to attend the conference.
And I didn't cry. Not the big messy scary tears that I thought might happen. Just some tears that managed to sneak out a bit when the keynote speakers were talking. The first keynote speaker was Lauren Potter who is on the show "Glee". What a feisty girl! She had us laughing and cheering. I was amazed at how clearly she was speaking. The only adults that I knew with DS I had a hard time communicating with because it was hard to understand what they were saying. She did a great job of presenting and encouraging us with her stories. The second speaker was a doctor of something (baby brain) and he made me cry because of a story he told about his sister.
Speaking of sister, I must run now because the big sister just got off the bus. More about the conference later.
The three of us attended the 2013 Down Syndrome Conference. I remember being super excited as we pulled out of my parents' driveway, and thinking, "I'm gonna make sure I mention this part in my blog." I was so excited for a few reasons. I was pumped to go on an adventure with my boy, and my mom where no one in our family had gone before. Sure we've done trips to Winnipeg before, and yes, Simon and I have made the trip with an extra adult who is not Andrew before, but this was different. We were going to learn specifically about Simon. He was going to be the spotlight, not just the appointment.
We have had fun at Baby Love in the past (a fun event for families with children who have Down Syndrome) and we've made contact with new people and become friends, but this was bigger. This was trailblazing where the Wiens family has never been before. (Cue Star Trek music.)
We listened to the Vinyl Cafe on the way to the city, and laughed until we cried. (That means we had a great trip.) I drove to my midwife appointment with my mom and Simon (a huge deal for a small town driver), and then dropped my mom off at my aunt's house. Simon and I settled in at our friends' place for night and we were set. Of course I had a terrible sleep because when you know you need to wake up at a certain time in order to be on time, you have to wake up ever couple of hours to make sure your alarm clock is set. Right? That and the fact that I was 7 months pregnant combined to give me a very long night. Sigh.
Simon and I got to the bus stop on time, we watched cars drive by, we rode the bus with no problem, walked downtown to the hotel where the conference was without getting sidetracked, and we were swimming.
We walked up to the hotel and I spotted (as I suspected I would) a person with Down Syndrome. She and her friends (who also have DS) were walking to the hotel talking about what they were planning to attend that day. They commented on Simon and how cute he was, and we walked into the hotel. We were surrounded. Sink or swim I was at the conference and I might cry in public. That was really one of my concerns going to the conference. I was concerned that I would cry at a strange time and people would wonder what was wrong with me. I'm not gonna lie, I tear up during some commercials, do the thought of crying because of some random event made me a bit nervous. I didn't want to be that pregnant woman sobbing in the corner. Nope, I wanted to take it all in. Learn as much as I could. I knew if I teared up I might start crying loudly and awkwardly and not be able to stop. I might miss important bits of information that could help Simon talk sooner or something like that. I had to pay attention.
We met up with my mom and then dropped Simon off at the childcare area. I think that was one of my favorite things about the conference. I didn't have to worry about chasing him around. I could sit, put my feet up and learn. Anyway...... the conference started with the opening ceremony. There were flag bearers and a conference room full of people who were there because they had children with Down Syndrome or were educators wanting to learn more about how to help our kids in schools. I fit in. It was a strange feeling to know that we were all united by this crazy chromosome, and had so much in common, and yet we were all so different. We sat at a table with a lady from England. She made the trip to Canada just to attend the conference.
And I didn't cry. Not the big messy scary tears that I thought might happen. Just some tears that managed to sneak out a bit when the keynote speakers were talking. The first keynote speaker was Lauren Potter who is on the show "Glee". What a feisty girl! She had us laughing and cheering. I was amazed at how clearly she was speaking. The only adults that I knew with DS I had a hard time communicating with because it was hard to understand what they were saying. She did a great job of presenting and encouraging us with her stories. The second speaker was a doctor of something (baby brain) and he made me cry because of a story he told about his sister.
Speaking of sister, I must run now because the big sister just got off the bus. More about the conference later.
Saturday, March 2, 2013
We are here, and we are getting there.
I'm just a little bit excited. I mean I'm jumping up and down inside because I have realized something.
Let's say that Simon's life is like a trip from here (Manitoba) to British Columbia. When we make the trip, we stop multiple times for multiple reasons. Gas, bathroom breaks, food, and running around, just to name a few. Now, let's say that every hour of travelling is approximately a year of Simon's life. We are now roughly about an hour past Yorkton, Saskatchewan. (I know! What a place to be!) Anyway, for the sake of argument and setbacks and such, let's just round it down to Yorkton. (They've got a Wendy's/Tim Horton's.) We are finally here! By here, I mean at a place where I don't have to pack cheerios and raisins, and food that I know Simon will like, because he will eat anything!!!! I mean anything. This boy is finally in a place where I can give him a real plate, and a real fork, or a real bowl and real spoon, and he will happily play with and/or eat anything that is in front of him. Yes, I cut up his meat into bite size pieces, and I sometimes help him out by putting it on the fork for him, but he will eat. Today at supper he ate beef vegetable soup. I helped him spoon it, and he wore a lot of it, but he ate it. He drank apple juice! We are in Yorkton! We have made it past tube feedings, and spoon feeding purees of oatmeal and prunes. The boy is even getting some love handles. Unless you have had feeding issues with your own kids - by issues I mean more than just picky eaters - you cannot understand the immense relief and joy I feel at realizing that we have arrived. Of course there will be times when we have to go back a couple of minutes or hours because we forgot something, or just past a town with a bathroom, but we are going forward.
All of this progress is not just Simon working hard. Nor is it because I am a psycho mom who pushes him to do what he needs to. Both of those things are true, but none of this would be possible without the grace of God. (Hold your breath, I'm going to be preachy for a bit.) When I look at all the feeding struggles we have dealt with, and how many times I wanted to give up, I want to cry. I may in fact be tearing up a little here. We fought so hard with this kid, and we had so many people on our team. But without the strength that God gave us, we would be nowhere. God gave me strength even before I asked for it. He put the right people on our team, so that when I relied too heavily on them, they gave me the firm push that I needed to try things "normally". I never in a million years would have thought that I would be strong enough, or brave enough to ask our neighbour at the time, who is a pediatric nurse, to come over and hold Simon for me so that I could put his feeding tube back in. I would balked at the idea of doing it myself. I would have asked her to do it. But no, God gave me the strength and confidence to do it myself. (I must brag and say that it was a pretty good placement. He cooperated perfectly.) This is me! This is the kid who refused to take swimming lessons because when they called my name I wouldn't leave from hiding behind my mom's skirt. This is the girl who used to stare at the table when an adult was trying to make conversation with me.
There is no way that I have grown this courage on my own. I am continually amazed at how having Simon in our lives has changed, challenged and stretched us in so many ways that we could not have imagined. I've said it before, and I'll say it again. I wouldn't trade that kid for anything in the world. He is a gift from God, and I look forward to seeing where else he is going to change us, and where else He is going to stretch us.
That's it for now, hopefully you will hear from me again before we get to Saskatoon. (Figuratively of course. Don't get your nickers in a knot if you live in Stoon and don't get a call!)
Sara
Let's say that Simon's life is like a trip from here (Manitoba) to British Columbia. When we make the trip, we stop multiple times for multiple reasons. Gas, bathroom breaks, food, and running around, just to name a few. Now, let's say that every hour of travelling is approximately a year of Simon's life. We are now roughly about an hour past Yorkton, Saskatchewan. (I know! What a place to be!) Anyway, for the sake of argument and setbacks and such, let's just round it down to Yorkton. (They've got a Wendy's/Tim Horton's.) We are finally here! By here, I mean at a place where I don't have to pack cheerios and raisins, and food that I know Simon will like, because he will eat anything!!!! I mean anything. This boy is finally in a place where I can give him a real plate, and a real fork, or a real bowl and real spoon, and he will happily play with and/or eat anything that is in front of him. Yes, I cut up his meat into bite size pieces, and I sometimes help him out by putting it on the fork for him, but he will eat. Today at supper he ate beef vegetable soup. I helped him spoon it, and he wore a lot of it, but he ate it. He drank apple juice! We are in Yorkton! We have made it past tube feedings, and spoon feeding purees of oatmeal and prunes. The boy is even getting some love handles. Unless you have had feeding issues with your own kids - by issues I mean more than just picky eaters - you cannot understand the immense relief and joy I feel at realizing that we have arrived. Of course there will be times when we have to go back a couple of minutes or hours because we forgot something, or just past a town with a bathroom, but we are going forward.
All of this progress is not just Simon working hard. Nor is it because I am a psycho mom who pushes him to do what he needs to. Both of those things are true, but none of this would be possible without the grace of God. (Hold your breath, I'm going to be preachy for a bit.) When I look at all the feeding struggles we have dealt with, and how many times I wanted to give up, I want to cry. I may in fact be tearing up a little here. We fought so hard with this kid, and we had so many people on our team. But without the strength that God gave us, we would be nowhere. God gave me strength even before I asked for it. He put the right people on our team, so that when I relied too heavily on them, they gave me the firm push that I needed to try things "normally". I never in a million years would have thought that I would be strong enough, or brave enough to ask our neighbour at the time, who is a pediatric nurse, to come over and hold Simon for me so that I could put his feeding tube back in. I would balked at the idea of doing it myself. I would have asked her to do it. But no, God gave me the strength and confidence to do it myself. (I must brag and say that it was a pretty good placement. He cooperated perfectly.) This is me! This is the kid who refused to take swimming lessons because when they called my name I wouldn't leave from hiding behind my mom's skirt. This is the girl who used to stare at the table when an adult was trying to make conversation with me.
There is no way that I have grown this courage on my own. I am continually amazed at how having Simon in our lives has changed, challenged and stretched us in so many ways that we could not have imagined. I've said it before, and I'll say it again. I wouldn't trade that kid for anything in the world. He is a gift from God, and I look forward to seeing where else he is going to change us, and where else He is going to stretch us.
That's it for now, hopefully you will hear from me again before we get to Saskatoon. (Figuratively of course. Don't get your nickers in a knot if you live in Stoon and don't get a call!)
Sara
Wednesday, February 13, 2013
There's a bun where?!
Ha! I got your attention with the title. As those of you on Facebook may have already realized, we are adding to our little family of four (and a dog) hopefully in early July. I just had my ultrasound today, and things look normal and cute. I just love watching the little person wriggling around on the screen. If it weren't for the angle of my head, I would pay to watch it all day long. It's so easy to take care of a little person when all you need to do is feed and water yourself. Throw some vitamins in for good measure, the odd bit of exercise and hope for a good sleep once in a while. Not much to it. Once they come out however..... That part has me a bit nervous. It's been almost 6 years since I've had a "normal" baby to feed and take care of. In some ways I discredit Simon as a baby experience because he came with an owner's manual of sorts that told me how much to feed him and how often. He had so many people keeping track of him, that I really didn't have to do much thinking for myself. Now I'm going to have to try to remember how to feed a baby without disintegrating, and keeping the baby's gas at bay. (Tube feeding has it's benefits! You can pull the burps out and get a gas free baby.)
Yup, there are many things that I am a bit anxious about having to remember or relearn. If I had more energy I would aim to do lists of things before said infant enters the external environment and demands more attention. Sadly, my energy is fairly low, so that limits my ambitions quite a bit.
I finished reading Andrew's cousins blog book a couple of weeks ago, and had my head full of the large words that are common in his vocabulary. For a couple of days I had "cacophony" stuck in my head. I had so many amazing posts that were rolling around between my ears, but not a spare moment to put proverbial pen to paper. That is the loss of a writer with an active family. Speaking of which - I had some specific things I was going to write about this evening, but there are only one or two thoughts have bothered to remain contained within my grey matter. (Myron's words are coming back to me!)
Lately I've been noticing Simon's sense of humor. After he is done his meal and he signs, "Thank you" and "excuse me" he gets this twinkle in his eye and a silly grin on his face. He waits until I have the washcloth wet and ready to clean him up and then he hides his hands behind his back in the chair. He says, "where" which comes out as "deh" but I know what he means. Then I have to hunt for his hands. He thinks he's so funny! I love our little game. I can't wait to see what other kinds of jokes he's going to play. (I mean other than let's hide my big sister's library book under the fridge and watch Mommy search the entire living room, dining room and kitchen for it.)
He's also taken to closing doors. This could be a really good thing, or maybe not so helpful. He is now tall enough to finally be able to just reach the doorknobs the pull the doors closed. So far it's worked out alright at home, but on Christmas Eve, he almost had me panicking. At that point he wasn't pulling the doors closed, he could just push them and lock himself in somewhere. I left him milling through the festive crowd at church, and noticed that I couldn't find him. I looked in the usual spots, and even the unusual ones. Someone kind of chuckled at me for checking toilets, but really - if he had fallen in.... Anyway, I looked and looked and got a couple of other people to help me look too. I was ready to announce that he was missing and it was an emergency when I decided to check the most obvious place. I had noticed earlier that the cry room door was closed, which in my head at the time eliminated it from the search area. Now however I had that last stone to turn over before I gave in to full fledged panic. I opened the door, and there was a very sad wet face staring up at me crying hoarsely. The poor guy had people standing right outside the door and they didn't hear him crying. I was so thankful that nothing had happened to that little stinker. I can't even imagine how it must feel to have a child really go missing, and for days on end. Stay safe little ones.
In other growing up news, his signing vocabulary is now up to close to 160 or so. He's also working on perfecting the signs so that they don't look quite so similar and are actually gender specific. "Mom" is no longer the same as "Dad". So glad we got that straightened out. He is also starting to talk a bit more. He is saying "Mom" exactly like it I spelled it. I'm also very happy to no longer be "Bum" or "Bub".
One final brag item before I take myself to see the sandman - Simon loves to do laundry! He had a temper tantrum the other day because we weren't doing laundry in the correct order. Usually I get him to start helping after I've done one load in the washer. Then he helps me move the wet clothes into the dryer, and press the button. After that we dump more clothes into the washer, add the soap, pull the knob and check to make sure the water is running. This time I had a clean load done, and was only taking items out of the dryer. We put clothes into the washer, but there was nothing yet to put into the dryer. The poor little guy was so devastated that he couldn't put stuff into the dryer and press the button. Oh the trials of being a three year old stay-at-home child.
Thanks to everyone who's been reading these very sadly random posts, and we continue to welcome your comments and prayers as we journey down this road called parenting, and up the down escalator with our family. Thankfully I've been blessed that I've somewhat moved from going up the wrong escalator to just walking the wrong way on the moving sidewalk. I think we might actually be gaining ground as we travel along. I still have moments where if I stop looking and moving forward I get mired down by watching other kids his age do normal three year old things, but I think I'm still hanging on. Most of the time.
Thanks again and until later,
Sara
Yup, there are many things that I am a bit anxious about having to remember or relearn. If I had more energy I would aim to do lists of things before said infant enters the external environment and demands more attention. Sadly, my energy is fairly low, so that limits my ambitions quite a bit.
I finished reading Andrew's cousins blog book a couple of weeks ago, and had my head full of the large words that are common in his vocabulary. For a couple of days I had "cacophony" stuck in my head. I had so many amazing posts that were rolling around between my ears, but not a spare moment to put proverbial pen to paper. That is the loss of a writer with an active family. Speaking of which - I had some specific things I was going to write about this evening, but there are only one or two thoughts have bothered to remain contained within my grey matter. (Myron's words are coming back to me!)
Lately I've been noticing Simon's sense of humor. After he is done his meal and he signs, "Thank you" and "excuse me" he gets this twinkle in his eye and a silly grin on his face. He waits until I have the washcloth wet and ready to clean him up and then he hides his hands behind his back in the chair. He says, "where" which comes out as "deh" but I know what he means. Then I have to hunt for his hands. He thinks he's so funny! I love our little game. I can't wait to see what other kinds of jokes he's going to play. (I mean other than let's hide my big sister's library book under the fridge and watch Mommy search the entire living room, dining room and kitchen for it.)
He's also taken to closing doors. This could be a really good thing, or maybe not so helpful. He is now tall enough to finally be able to just reach the doorknobs the pull the doors closed. So far it's worked out alright at home, but on Christmas Eve, he almost had me panicking. At that point he wasn't pulling the doors closed, he could just push them and lock himself in somewhere. I left him milling through the festive crowd at church, and noticed that I couldn't find him. I looked in the usual spots, and even the unusual ones. Someone kind of chuckled at me for checking toilets, but really - if he had fallen in.... Anyway, I looked and looked and got a couple of other people to help me look too. I was ready to announce that he was missing and it was an emergency when I decided to check the most obvious place. I had noticed earlier that the cry room door was closed, which in my head at the time eliminated it from the search area. Now however I had that last stone to turn over before I gave in to full fledged panic. I opened the door, and there was a very sad wet face staring up at me crying hoarsely. The poor guy had people standing right outside the door and they didn't hear him crying. I was so thankful that nothing had happened to that little stinker. I can't even imagine how it must feel to have a child really go missing, and for days on end. Stay safe little ones.
In other growing up news, his signing vocabulary is now up to close to 160 or so. He's also working on perfecting the signs so that they don't look quite so similar and are actually gender specific. "Mom" is no longer the same as "Dad". So glad we got that straightened out. He is also starting to talk a bit more. He is saying "Mom" exactly like it I spelled it. I'm also very happy to no longer be "Bum" or "Bub".
One final brag item before I take myself to see the sandman - Simon loves to do laundry! He had a temper tantrum the other day because we weren't doing laundry in the correct order. Usually I get him to start helping after I've done one load in the washer. Then he helps me move the wet clothes into the dryer, and press the button. After that we dump more clothes into the washer, add the soap, pull the knob and check to make sure the water is running. This time I had a clean load done, and was only taking items out of the dryer. We put clothes into the washer, but there was nothing yet to put into the dryer. The poor little guy was so devastated that he couldn't put stuff into the dryer and press the button. Oh the trials of being a three year old stay-at-home child.
Thanks to everyone who's been reading these very sadly random posts, and we continue to welcome your comments and prayers as we journey down this road called parenting, and up the down escalator with our family. Thankfully I've been blessed that I've somewhat moved from going up the wrong escalator to just walking the wrong way on the moving sidewalk. I think we might actually be gaining ground as we travel along. I still have moments where if I stop looking and moving forward I get mired down by watching other kids his age do normal three year old things, but I think I'm still hanging on. Most of the time.
Thanks again and until later,
Sara
Saturday, October 20, 2012
Five months!
Okay, so really, I need to get into the habit of doing this on a more regular basis. Five months is far too long to go without updating you on our adventures. When I look back at my previous two posts, I think about where we are now in comparison. I can't even find something to compare it to our progress is so great.
Last time Simon was just starting to drink from a cup. As far as drinking and eating goes, we are sadly in almost the same place. He has his good days and his bad. He likes to drink water right before bed. (He has already learned that if he signs for water, it will get him out of his bedroom again.) Some days I am amazed that he can survive on cheerios, raisins, chocolate milk and peanut butter. Granted, those are the four food groups, but lets get some variety in there! Then there are days when he gobbles up meat and some veggies. Those days I feel like I am feeding my son what he needs.
In other areas we have made several leaps and bounds. His signing vocabulary is increasing exponentially. He now has over 120 signs that he uses both to copy me, and independently. There are however a few problems with this. There are multiple signs that he uses that look exactly the same. They aren't supposed to, but the way he does it, hot and handsome look identical. Yes, I know they can both be used to describe some people, but I'm talking hot as in temperature. The other morning, after Elizabeth got on the bus, I asked Simon what we should do. He signed "dog". This made perfect sense because that is what we had done the evening before. We had taken the dog for a walk as a family, and he wanted to do the same thing. He is getting so smart! His favorite signs are cheerios, bed, shoes and milk. I can tell that his hearing isn't as good as it should be, because when I tell him it's time to go to school, he will sign "cold". Maybe he is alluding to the cold sterile environment with the tile floors and fluorescent lighting......I think he just can't hear it properly.
He really does love school. He has an integration worker, who also happens to be our respite worker. He has my cousin as the preschool assistant. My cousin had a younger sister with Down Syndrome, and has work experience with adults with Down Syndrome. His preschool teacher is also involved with another child with Down Syndrome, and she is doing signing with her. It's my dream team. I can't wait to see what he will be doing at the end of this year.
He is walking around everywhere! There is no stopping him now. Any open door is an opportunity for adventure. Whether we opened it or not. I am not looking forward to the time that he discovers the motion doors at the mall. I am seriously beginning to rethink my stance on the leash idea. He is again working hard on what his therapists are wanting him to do next. This is what we want him to do next. So he does it. What do we do for the other two weeks until the next appointment? Walking backwards? Done. Crawling? Done. Jumping? We'll work on that one.
Intellectually he is moving right along. A month ago he could barely get one piece of a puzzle in with help. Last week he did four out of eight pieces without help. He finds a sticky note on the floor, walks to the garbage, opens the door and then the lid, puts it in, closes the lid, and closes the door. Oh dear! Where did I leave my watch?!
He loves our dog. Elizabeth used to be terrified of dogs. Who am I kidding? She is still scared of them most of the time. When we bring Prince into the house, Simon will pull on his leash to get him to move. Poor dog. Maybe the choke collar isn't a good idea. If he gets knocked down, he will just stand up and keep trucking after the dog, signing dog and saying, "woof".
Talking is another thing that we are working on. He is almost at that stage where it is really fun to make him repeat words. I remember getting little kids to say refrigerator, or hippopotamus. The way that Simon says Elizabeth's name is either a "Dee" or a "Eh" with a shake of his head. He will say mom and dad, and today it sounded like he said, "milk".
I had a million and one things in my head as I was washing the dishes that I was going to tell you about, and of course, now they are nowhere to be found. Maybe getting a few extra hours of sleep in a night will help this memory loss. On that note, I should hit the hay. Thanks so much for keeping up with us, and I apologize again for my random postings. I aim to be more consistent.
Thanks again,
Sara
Last time Simon was just starting to drink from a cup. As far as drinking and eating goes, we are sadly in almost the same place. He has his good days and his bad. He likes to drink water right before bed. (He has already learned that if he signs for water, it will get him out of his bedroom again.) Some days I am amazed that he can survive on cheerios, raisins, chocolate milk and peanut butter. Granted, those are the four food groups, but lets get some variety in there! Then there are days when he gobbles up meat and some veggies. Those days I feel like I am feeding my son what he needs.
In other areas we have made several leaps and bounds. His signing vocabulary is increasing exponentially. He now has over 120 signs that he uses both to copy me, and independently. There are however a few problems with this. There are multiple signs that he uses that look exactly the same. They aren't supposed to, but the way he does it, hot and handsome look identical. Yes, I know they can both be used to describe some people, but I'm talking hot as in temperature. The other morning, after Elizabeth got on the bus, I asked Simon what we should do. He signed "dog". This made perfect sense because that is what we had done the evening before. We had taken the dog for a walk as a family, and he wanted to do the same thing. He is getting so smart! His favorite signs are cheerios, bed, shoes and milk. I can tell that his hearing isn't as good as it should be, because when I tell him it's time to go to school, he will sign "cold". Maybe he is alluding to the cold sterile environment with the tile floors and fluorescent lighting......I think he just can't hear it properly.
He really does love school. He has an integration worker, who also happens to be our respite worker. He has my cousin as the preschool assistant. My cousin had a younger sister with Down Syndrome, and has work experience with adults with Down Syndrome. His preschool teacher is also involved with another child with Down Syndrome, and she is doing signing with her. It's my dream team. I can't wait to see what he will be doing at the end of this year.
He is walking around everywhere! There is no stopping him now. Any open door is an opportunity for adventure. Whether we opened it or not. I am not looking forward to the time that he discovers the motion doors at the mall. I am seriously beginning to rethink my stance on the leash idea. He is again working hard on what his therapists are wanting him to do next. This is what we want him to do next. So he does it. What do we do for the other two weeks until the next appointment? Walking backwards? Done. Crawling? Done. Jumping? We'll work on that one.
Intellectually he is moving right along. A month ago he could barely get one piece of a puzzle in with help. Last week he did four out of eight pieces without help. He finds a sticky note on the floor, walks to the garbage, opens the door and then the lid, puts it in, closes the lid, and closes the door. Oh dear! Where did I leave my watch?!
He loves our dog. Elizabeth used to be terrified of dogs. Who am I kidding? She is still scared of them most of the time. When we bring Prince into the house, Simon will pull on his leash to get him to move. Poor dog. Maybe the choke collar isn't a good idea. If he gets knocked down, he will just stand up and keep trucking after the dog, signing dog and saying, "woof".
Talking is another thing that we are working on. He is almost at that stage where it is really fun to make him repeat words. I remember getting little kids to say refrigerator, or hippopotamus. The way that Simon says Elizabeth's name is either a "Dee" or a "Eh" with a shake of his head. He will say mom and dad, and today it sounded like he said, "milk".
I had a million and one things in my head as I was washing the dishes that I was going to tell you about, and of course, now they are nowhere to be found. Maybe getting a few extra hours of sleep in a night will help this memory loss. On that note, I should hit the hay. Thanks so much for keeping up with us, and I apologize again for my random postings. I aim to be more consistent.
Thanks again,
Sara
Tuesday, May 22, 2012
My heart is full :)
Last night I lay in bed trying to fall asleep, and the only thing I could think of was a wonderfully worded introductory sentence for a new blog post. Guess what. That was not the sentence I was thinking of. I've been thinking for a while that I need to do some updating, as some of you haven't heard from me in a while. Life is chaos, that's why.
I heard a wise woman once say, that if you wait for the time when things are slower - the kids are in school so you'll have more time, when they move out, when you retire you will have lots of time to relax - those times never come. It's true. When summer holidays start up we work in the garden. We do camp. We take holidays. Who has time to do anything then? I've decided that she is absolutely right. No matter how fancy my day planner is, there is no page in there that has a stay at home and do nothing day. Time marches on.
We've made some progress in our life since I posted last. Last time I was fighting some dragons or discouragement and dissatisfaction with my place. Now, that is past - for the most part - and we are making strides to a more grown up life. Simon has been doing really well, which is one of the reasons that the dragons are at bay. We had a feeding appointment a couple of weeks ago, and today at lunch he DRANK almost a full cup of chocolate milk. We are making progress. Granted I still have to hold the cup for him, but he is drinking in his unique way, and not just chocolate milk. He is drinking water from a cup. And using a spoon to feed himself yogurt and pudding. It is a huge mess, but he is so proud of himself
He is sporting a huge bruise on his forehead today from a crash yesterday as he was trying to walk from one couch to the other across the room. Now, before you all jump up and down and cheer that he is walking - I made him do it. He still isn't terribly interested in taking steps on his own, but he will do it if I make him. I know, I should let him do it in his own time, but if I push him he might get there just a little quicker. I did teach him to crawl properly though. He used to only crawl if his forehead was on the floor too. He looked like a little vacuum cleaner or some kind of toy. Now, if I can catch him and grab his leg so he doesn't bum scoot, then he will crawl. At first I had to crawl along beside him and hold his leg and alternately push his head up, but now he usually does it right. His first preference is still to bum scoot, but that's okay, I'll keep trying.
I've been reading the book Bloom, by Kelle Hampton. It is a very interesting book, and very different from what I expected. I had first read her blog, and Nella's birth story a couple of months after Simon was born. I cried. A lot. I could relate to a lot of what she was feeling and how quickly the darkness set in. Now, though, as I read her book, she puts it in a different light. I'm two or three chapters from the end and I'm just starting to get to the part where she embraces the Down Syndrome community and Nella's role in it. I'm glad she's finally getting to that point, because I was starting to feel like a bad parent for embracing it right off the bat! She is very gifted writer, and I wish in some ways that I could write with her eloquence, but on the other hand, I'm just me. I write like me. She writes a lot about how she is so in love with her daughters and how they are the best things in her life, and how her friends are so supportive, and so on and so forth. Again I wondered, am I a bad parent because I don't always feel this gush of love for my kids? Sometimes I want them to go to bed early so I don't have to answer a million questions about everything. I was beginning to wonder if I really loved my kids that way at all. Today though, I had a blast with my kids and loved them over the moon and back. Simon and I had a date driving to Dauphin for speech. It was complete with erratic driving as I car dance, and he did too. We were head banging and rocking it out in the car. I drove erratically on the way home too, because on a straight highway, with few cars, I could reach back and feed him some delicious fish that my aunt fried up for us. I didn't feel ashamed of him when we went to the mall. We cruised through Wal-mart and people commented on his big grin. I am in awe of the love I feel for my handsome little boy. He is such a trooper, and such a boy! So busy, and getting into things, and hiding things, and banging things against walls and doors. Pressing a toy that makes music and then spinning in a circle and yelling. So sweet.
And Elizabeth and I have had a great day today. She played with rice, and I played with her for a bit. She played dolls by herself and didn't have a temper tantrum. We had a good day. We had a blessed day. My heart is full of love for my kids, and their dad, and our future. No matter what it holds we will keep trucking as we can. We look forward to milestones, yes, but we embrace the journey and the joy that goes along with the little steps, the chocolate milk, and the dolls. I can sleep well tonight. My job is done, and done well.
I heard a wise woman once say, that if you wait for the time when things are slower - the kids are in school so you'll have more time, when they move out, when you retire you will have lots of time to relax - those times never come. It's true. When summer holidays start up we work in the garden. We do camp. We take holidays. Who has time to do anything then? I've decided that she is absolutely right. No matter how fancy my day planner is, there is no page in there that has a stay at home and do nothing day. Time marches on.
We've made some progress in our life since I posted last. Last time I was fighting some dragons or discouragement and dissatisfaction with my place. Now, that is past - for the most part - and we are making strides to a more grown up life. Simon has been doing really well, which is one of the reasons that the dragons are at bay. We had a feeding appointment a couple of weeks ago, and today at lunch he DRANK almost a full cup of chocolate milk. We are making progress. Granted I still have to hold the cup for him, but he is drinking in his unique way, and not just chocolate milk. He is drinking water from a cup. And using a spoon to feed himself yogurt and pudding. It is a huge mess, but he is so proud of himself
He is sporting a huge bruise on his forehead today from a crash yesterday as he was trying to walk from one couch to the other across the room. Now, before you all jump up and down and cheer that he is walking - I made him do it. He still isn't terribly interested in taking steps on his own, but he will do it if I make him. I know, I should let him do it in his own time, but if I push him he might get there just a little quicker. I did teach him to crawl properly though. He used to only crawl if his forehead was on the floor too. He looked like a little vacuum cleaner or some kind of toy. Now, if I can catch him and grab his leg so he doesn't bum scoot, then he will crawl. At first I had to crawl along beside him and hold his leg and alternately push his head up, but now he usually does it right. His first preference is still to bum scoot, but that's okay, I'll keep trying.
I've been reading the book Bloom, by Kelle Hampton. It is a very interesting book, and very different from what I expected. I had first read her blog, and Nella's birth story a couple of months after Simon was born. I cried. A lot. I could relate to a lot of what she was feeling and how quickly the darkness set in. Now, though, as I read her book, she puts it in a different light. I'm two or three chapters from the end and I'm just starting to get to the part where she embraces the Down Syndrome community and Nella's role in it. I'm glad she's finally getting to that point, because I was starting to feel like a bad parent for embracing it right off the bat! She is very gifted writer, and I wish in some ways that I could write with her eloquence, but on the other hand, I'm just me. I write like me. She writes a lot about how she is so in love with her daughters and how they are the best things in her life, and how her friends are so supportive, and so on and so forth. Again I wondered, am I a bad parent because I don't always feel this gush of love for my kids? Sometimes I want them to go to bed early so I don't have to answer a million questions about everything. I was beginning to wonder if I really loved my kids that way at all. Today though, I had a blast with my kids and loved them over the moon and back. Simon and I had a date driving to Dauphin for speech. It was complete with erratic driving as I car dance, and he did too. We were head banging and rocking it out in the car. I drove erratically on the way home too, because on a straight highway, with few cars, I could reach back and feed him some delicious fish that my aunt fried up for us. I didn't feel ashamed of him when we went to the mall. We cruised through Wal-mart and people commented on his big grin. I am in awe of the love I feel for my handsome little boy. He is such a trooper, and such a boy! So busy, and getting into things, and hiding things, and banging things against walls and doors. Pressing a toy that makes music and then spinning in a circle and yelling. So sweet.
And Elizabeth and I have had a great day today. She played with rice, and I played with her for a bit. She played dolls by herself and didn't have a temper tantrum. We had a good day. We had a blessed day. My heart is full of love for my kids, and their dad, and our future. No matter what it holds we will keep trucking as we can. We look forward to milestones, yes, but we embrace the journey and the joy that goes along with the little steps, the chocolate milk, and the dolls. I can sleep well tonight. My job is done, and done well.
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