Why that name

Just a quick note - I chose this title for my blog because if any of you have tried to actually go up the down escalator it is a lot of work. When my son Simon was born, I was figuratively transported to the basement. I was struggling to find out what this meant for our family, and our future. I began a journey on that day, to go up the down escalator. I know it will always be a lot of work to keep going up, but that is what I have to do now to stay out of the basement. Simon has Down Syndrome, but I am choosing every day to make life normal for him and to help us get back to the ground floor. Anytime I forget the joy and stop moving forward, I find myself rapidly descending into the basement again. Thankfully I also have an emergency stop button. He is my Creator and my Father. The One who brings the despair to a standstill when I call on Him. He is my Rock and Refuge. The One I can run to when no one else understands. It may sound cliche, but it's true, I couldn't do any of this without God. He is the reason that some days I can still smile when things are ridiculous inside. That is why the name.

Tuesday, August 26, 2014

Did you see what he said?

Here we are with another post. Two in one day?! What is going on?

I know, things have been a bit slack lately, but I'm trying my best to catch up. That means, that hopefully within the next month I will be caught up to where we currently are in real life, and not just last year life. Come along with me for a brief walk down memory lane.

I have a confession. I judge people. I try not to, but realistically we all do it. We see someone, and we look at them, and make an assumption about their personality, income, social status and so on. In school I was taught that this was called prejudice. It is isn't necessarily a bad thing. It helps us to decide if a stranger is safe to approach. Some prejudice is called instinct. It is a God given gift.

But, judging based on what we think, and not on our instinct is not a gift. That is something that I am trying to figure out how to eliminate from my mind's behavior.

Where am I going with this? When I used to see someone with a disability, I would usually assume that they weren't very smart. If I saw someone who didn't talk, I assumed that they didn't understand. Now, I'm wishing I could go back a bit and see people for who they are on the inside, not what we see on the outside. Why?

Because my son is non-verbal.

That is a hard pill to swallow. I had and still have an idea in my head of what someone who is non-verbal is like. I fight it, because now it applies to one of my own kids, but it's still there in the back of my head.
"Of course he doesn't understand, he's not saying anything."

Oh, the things I have learned.

I remember the day that it hit me that Simon was non-verbal. It felt like a kick in the stomach. It threw my entire day off. I didn't know what to think or where to go. People looked at Simon like I had looked at other people who didn't talk?! That's not fair! He's smart! He can communicate! Stop judging my son!

I waited until his next speech appointment to ask his speech therapist about my question. "Is he actually non-verbal?" The honest reply? "Yes".

Wow. Now what?

Defensiveness of course. No he's not. He communicates. He has over 200 signs! He can tell me what he wants!

But no, that's not how it works. He doesn't talk. He's non-verbal.

Now, I have this conflict inside of me. Do I look at my son the way that I used to look at other people who didn't talk? Do I judge him? Of course not. Why? Because I know him.

I know that he is smart. I know that he is determined. I know that he understands so much more than he lets on. I know that he gets frustrated when people don't understand him. I love him. He's my son.

This boy never ceases to amaze me with what he can do. He pays attention to little details that no one else notices. He sees the little bird on a calendar, when everyone else is admiring the elk in the middle of the picture.

Sometimes I feel sick, when I think of what people used to do to kids like Simon. He would have been institutionalized. He probably would have been doped up on meds, or restrained to curb bad behavior. There was a time when parents tried to hide that their child had a disability. They gave them plastic surgery to "fix" their noses, eyes and tongues. Their tongues were cropped, and then they weren't able to speak. Why are we so afraid of those who are different?

We go to the personal care home to visit people there. It is my least favorite part of being involved with the church. I always feel awkward and unsure if the people are sleeping, or catatonic, or what they are thinking. The people who can communicate, I have no problem chatting and smiling with. It's the people who can't communicate who scare me. Yes, they actually make me nervous.

Now, though, I should be looking at these people differently. They are kind of like Simon, after all. They probably understand, but can't say what they want. Why should I be scared of them? I should treat them just like everyone else. I am a walking oxymoron.

Enter sign language. Simon has over 200 signs that he knows. However, I am the only one in our family that knows the same number of signs. Quite often I get asked, "What's Simon saying?" While it is a wonderful thing to be the interpreter for your child, it is also very limiting. I remember the first time I left him with a non-regular babysitter. My instructions for Elizabeth were to help the babysitter understand what Simon wanted. I'm sure she did a great job of interpreting, but really, who can expect a big sister to spend her childhood keeping track of what her brother is saying. That's not a fair reality. It may be a partial reality for our family, but it's not fair.

Enter communication device. We are now boldly going where no Wiens has gone before. (Maybe other Wiens families have, but not ours.) We are getting funding for an app called Speak for Yourself. It will be Simon's means of communication. He will press a button on the screen, and it will say the word out loud for him. It is somewhere that I did not want to go. I had full hopes that he would learn to speak sooner than later. But now, it is getting later and later, and it's less and less constructive to keep putting it off.  I want people to understand him. I want people to give him credit for what he understands and can do. He will be going to school soon, and kids may start avoiding him if they can't understand him. It's time to give Simon a voice. To let him out. To free him from my good intentions, hopes and dreams that are restrictive.

It still feels like a punch in the gut sometimes to think about him being non-verbal. It feels like I wear a label of failing as his mom. He's my kid. It's my job to teach him to talk. I know that I'm not actually a failure, and hopefully he will talk effectively one day, but for now, I have to learn to deal with where we are and what we've got.

An example of where we are - A couple of months ago, I got Simon to help my fix the vacuum cleaner. With all the hair in our family, the vacuum cleaner head had stopped turning freely because it was gagged with hair. I took out the screw driver and showed Simon where to put it to open up the vacuum cleaner head. We took it apart, pulled all the hair out (gag) and put it back together. On Friday, I was going to vacuum before our company came over for supper. I had the vacuum cleaner out and was about to start vacuuming. Simon came trotting over with the screw driver that he had pulled out of the drawer where we keep it, and put it first in one place and then the other, as we had when we opened it together last time. I couldn't rush him through the process. He had to do both places before I could vacuum.

I can't wait to see where these traits will take him. His steel trap memory. His dogged determination to go outside. His excitement to "drive the car" when we are parked in the driveway. What kind of job will he want? A delivery driver? He could deliver groceries to people from the store. Fixing vacuum cleaners. I am so excited to watch him reach his full potential, whether he uses a communication device, or speaks clearly. I'm stoked to hear him "talk" and to hear what is going on in that blonde head of his.

Until the funding comes in though, I will have to be content with the combination of grunts, signs and the few words that he does say. He did put together a three word sentence the other day. Mom, broken trees. "Mom" was "Nuuuu" and broken trees was signed. I'll take it. He was pointing at the land that had been cleared by the highway on the way to town. Sure enough. Broken trees.

Anyway, he's been playing happily by himself this whole time I've been writing about him, so I should go and join in with the sound effects as we drive cars on the living room floor.

Time to spend time with my son who has Down Syndrome and is non-verbal.

Time to spend time with my son who has Down Syndrome.

Time to spend time with my son.


Pictures of the birth of a brother

As I said in my last post, I am going to put up some blog friendly pictures that our photographer took of Ezra's birth. I will leave out the very personal ones, but will give you an idea of what a great job she did and invite you into the birth centre.

So, this one wasn't one that Shannon took, but our friend Sharon took it just before we left for the birth centre. Our last picture as a family of four (and a half).

                                                          Just hanging out in the tub.

Andrew was reading out list of Scripture verses that we had picked to remind me of God's peace, and to not be afraid.

          Of course, there has to be at least one or two funny moments. It is my birth, after all.

     That moment we'd been waiting for! He was finally out, he was finally here. What a blessing!

                                                         It's a boy! EZRA!!!!

           My water baby! He was so calm up until just before this. Look at his chubby cheeks.

                                                      Does he look like his daddy?

                                  I guess we have to keep him. His big sister is already in love.

                                                              Be still my heart.

                                         Just when I thought it couldn't get any better.....

                                                            Look at his tiny hands!

                                                      Simon was so gentle with Ezra!

                                                                             Love it!
                                                           Who has bigger feet?

                                                  Sleep sweet my baby. You won't be small for long.

Stay tuned for more updates on our family.
Photo credit to Shannon Hayward http://www.shannonhaywardphotography.com/

Thank you for walking with us on our journey.

Wednesday, August 20, 2014

The Birth of a Big Brother

So..... I am still well over a year behind. Life just keeps trucking along, not bothering to ask me if I would like it for pause for a week or two so I can catch up on everything. Sigh.

As you may have guessed by the title of this post, this will in fact, be a birth story. Once again I make the disclaimer that if you do not like blood, or gory, perhaps intimate details of birth, please find something else to read and join me for the next post.

The last you heard from me, I was at the Down Syndrome conference in Winnipeg and was 7 months pregnant. Fast forward a couple of months to the end of June.

It was the end of June that Simon and I migrated to Winnipeg for a couple of weeks. Having had a midwife for the first two kids, we wanted to have the same midwife for the third baby, and that meant going to Winnipeg to deliver. Being four hours away, they (the midwives) felt more comfortable if I were to arrive at least a week or two before my due date, just in case the baby was fast. Andrew and I decided that one week would be plenty, as my first two babes were overdue. Elizabeth by two weeks, and Simon by one day. We therefore were not expecting an early arrival from baby number three.

Since we did not want to pay for a hotel for up to four weeks, we asked our good friends if we could reside in their basement until the birth. They graciously said yes. (They may have regretted that later, but we are still friends.) 

Elizabeth had a couple of days of school to finish up, so Simon and I moved to the city on our own, and hoped that Andrew and Elizabeth would get there in time for birth. As it was, there was plenty of time.

July 2nd was the actual due date for our little bean, and of course, like any expecting mom, I woke up that morning hoping that maybe I would be one of the 3% of women that would have her baby on their actual due date.  Not so much. We started to try various things to try to induce labor. I had reflexology done on my feet. Twice. No deal. I went for long walks. (They seemed long to me.) No deal. I ate one and a half fresh pineapple. No deal, sore tongue. We tried other things that I will not mention or may not remember. No way. This baby was setting up shop for good.

In the middle of this all, we had a few extra exciting moments. Simon at this point was still a runner. He didn't really do it on purpose, but he would just wander away. He was still three years old at this point, and not aware of the dangers of the street or getting lost. During one afternoon of trying to get ready to go to the library, with the mix of six kids and two or three adults, the gate got left open, Simon escaped and started to play on the street. I ran my pregnant self as fast as I could to the street, just in time to hear a car coming down the street. My heart almost stopped as I ran into the street, holding my arm out life a traffic cop and screaming, "Stop" as if that would stop the car bearing down on my son. Thankfully the car had good brakes, and Simon's guardian angel was able to keep him off the front grill of a car. I didn't even have the composure to thank the person driving for stopping in time. I just waved at them, hoped that they understood that this pregnant woman was about to lose it, and hauled Simon off the street. I cried and yelled, and cried some more. Then I went inside and very loudly and emotionally suggested to some of the kids that Simon not be allowed outside without an adult or all gates closed. Then I cried some more. I called Andrew to tell him that I was not going to be able to drive to the library, and unless he was able to drive me, I would not be going. He pulled up just after I left the message, so he didn't have to listen to me sniffling in his ear on the phone. Even on the drive to the library, I would still burst into random sobs at the thought of how close Simon came to getting hit. Now, we use a leash, and I don't feel very bad about using it. I feel bad that people may be judging me on my parenting, but I don't feel bad for keeping Simon safe.

The next day, after supper, it was time to put the kids to bed, so I had Simon inside taking off his shoes. He sat down and had a temper tantrum at the top of the stairs. Unfortunately, the landing at the top of the stairs wasn't as big as he thought it was, and he tumbled backwards down the full flight of stairs. Oh, his angels must have been getting paid overtime. He was fine, although reasonably, quite upset.

On Monday I had a midwife do a cervical sweep. Yeah! Some cramping, a show and other evidence of things starting! I started calling the family to let them know that things were starting to change. All day Monday I thought, this is it! We are going to have a baby today. Then Monday evening rolled around. Nothing had changed. I would start to have stronger Braxton Hicks contractions, but nothing more would materialize. Tuesday morning, I started having mild contractions. Okay. Here we go. They slowed down and stopped. Same thing on Wednesday. Thursday we tried a cervical sweep again. Things got moving and then stalled. This kid was trying my patience! Because I was more than a week overdue, by Friday I had a fetal assessment appointment to make sure fluid levels were fine and everything was okay. We saw, from the assessment that the baby was comfortably lying flat on his back. (We call all of our babies "he" until they prove otherwise.) The tech measured the baby and left the room. She came back in and said she needed to measure something again. She checked the baby's tummy and left again. Then she brought a chart in with her. It was a growth curve. I could see the standard lines, and then I saw an x at the very top. Oh no! She said, "This is where an average baby is (pointing at the lines on the chart). This is where your baby is (pointing at the x she had marked)." She was estimating based on the baby's measurements that the baby was between 10 and 11 lbs. We had known, based on other measurements and the size of my belly, that this was not going to be a small baby, but 11 lbs! Oh wow! She was insistent that we needed to get this baby out today, and it couldn't wait until Monday. She talked to a doctor, and called the midwives and told them the measurements an her concerns. We headed off to the birth center to meet with the midwives.

We discussed with them the possibilities to get this baby out sooner than later. They checked to see if I was dilated, and see how things were progressing. We tried using a breast pump to get things going, and we found that the baby's heart rate would drop after a contraction rather than during. This indicated some stress, and a question as to how baby would tolerate labor. It was then decided that we should head over to the hospital to do a non-stress test. I would be hooked up to a machine that measured contractions and fetal heart rate, and we would see how baby was dealing with labor. We found after half an hour or so, that baby was doing just fine with the whole thing, and was seeking attention. Silly baby!

 We decided to take a lunch break and headed to St. Vital mall to do some walking and eating. Andrew kept laughing at the number of people who were doing double takes at the size of my belly. I laughed at the food that he spilled on his shirt. I think we were even. Contractions got closer together when I was moving, but when I would stop walking around, they would slow down. We called the midwives to discuss what to do. Because I wasn't yet in active labor, I couldn't check in at the birth center. I felt like I needed to go back to home base, relax and try some techniques to turn the baby over. We headed back to our friends' place to regroup. Our friends had gone to a baby shower, so we had another friend come over when they left to look after our kids. We got back "home" but couldn't get in the door. Simon had decided to have a nap at the front door, effectively blocking our entrance. Simon's last stand? We finally got in, and she headed out. We ordered pizza, and I started crawling around the house. When Simon finally woke up enough from his nap and was coherent, he signed, "Where baby?" We didn't give him enough credit back then for what he was able to understand. He had heard us talking about going to have a baby, and here we were, home with no baby to show for it. That boy always surprises me.

So, our family ate pizza and I crawled around on the floor. Every time I would have a contraction, I would put my head on the floor, and my bum in the air. I remember crawling down the hallway at one point, thinking that one contraction felt a little different. After that I started to feel pressure when I had contractions. We called the midwife who told us to c'mon down. We called in another friend to keep an eye on the kiddos after we had brushed their teeth, and put their pajamas on for the last time as a family of four.

I don't remember much of the drive to the birth center, except reminding Andrew to drive carefully during contractions, as he seemed determined to drive over as many potholes as he could find. We got to the birth center around 8ish. They buzzed Andrew in the back door, and he grabbed a wheelchair to prop the door open to keep it from locking again. The midwives saw Andrew rush in, and grab a wheelchair. Of course they thought they were going to deliver a baby in the parking lot! I started getting out of the car, and had to stop during a contraction. I turned around and saw the midwives and their gear coming at me. I had  a good laugh at the misunderstanding.

We called the photographer shortly after we arrived. Yup, I had become one of "those people". I was tired of having pictures of Andrew holding the baby, and nothing of the first look that I got to have. I wanted to have pictures that captured the moment, the atmosphere, the people, the fun. (All you skeptics scoff at the fun!)

I told everyone, that within two hours this baby would be born. They just kind of smiled and nodded. I don't think they believed that I knew how well this was going to go.

I had my blood pressure taken, and hopped into the birthing tub. Okay, maybe hopped might not be exactly the right word, but I got in there somehow. It always amazes me how my body reacts to water. It is my birth drug. I could literally feel my body relaxing and opening up. (Like I said, if you don't like gory, go somewhere else.) We had borrowed our friends' iPod and were playing the playlist of Matt Redman. What a wonderful experience to be able to labor while listening to worship music. We had previously written out a bunch of scripture verses about fear, and not being afraid. When I would start to get tense, Andrew would read these to me. It was so soothing to be bathed in water, music and peace. I know, it sounds all hokey and unreal, but there really is something to the science behind relaxing your mind, relaxing your body and not being afraid of birth. Tense, tight muscles get hurt. That's why you stretch before you go for a run or work out. 

I kept laboring in the tub, the midwives kept track of my temperature, the baby's heart rate, and how much I was dilating. I remember being in the tub telling Andrew, "Shannon (our photographer) isn't going to make it in time." But she did. She got there with enough time to take some wonderful pictures of labor, and birth. 

At one point the lead midwife told me she wasn't going to check me anymore. I should just listen to my body and do what I needed to do. I was 8 cm at that point, and the rest was just going to melt away. I'm a numbers girl. I like things in concrete concepts. So, being told that I should just do what I felt like, was a bit of a stretch for me. (Pun intended.)

After an hour and twenty minutes in the tub, my water broke, and two pushes later our baby was born! Ezra Jonathan Cole was born within the two hour time frame I had predicted on arrival. He had a head full of hair, and had quite the jowls. He was slimy and beautiful and was calm. He didn't cry for the first five minutes or so. He was just taking it all in. I was so relieved that he was finally out, that for at least the first three minutes I didn't even bother to see if he was a boy or a girl. 

There is really no feeling like knowing that you just pushed a living being out of your body. It is incredible to experience. It's a superpower. A God given gift. 

So, after some cuddling in the tub with my new baby boy, I hopped out of the tub and onto the bed for some personal care. (Again, the usage of the word hopped, may be creative.)

So, as I lay there on the bed, watching the midwife weigh my baby I began to wonder how big this child was that I had just given birth to. The midwife's eyes kept getting bigger and bigger as she waited for the weight to register on the scale. Finally it settled. 10lbs, 10 oz. Yikes!  

I will admit, that although I pushed out that bruiser without any pain medication, I am a suck when it comes to stitches. I took the laughing gas that was offered, but it didn't seem to do much. Anyway, the baby was out and we were a family of five!

We got to go home that evening, and were back at our friends' place by 2 am. I love having midwives! Because of the follow up, they let you go home a lot sooner than at the hospital. We got back to home base, introduced Ezra to our friends, and tried to get some sleep. Ezra did not sleep well, but we made it through the first night and got to introduce our kids to him in the morning. I had Shannon come and do pictures of the kids meeting Ezra for the first time in the morning, and I am so glad I did. Elizabeth was so gentle with him, and Simon amazed me. He compared feet with the baby to see who had bigger feet, and he was so gentle with touching him. It was exactly what I dreamed when I thought Simon should be a big brother. 

The rest is kind of a blur, as sleep deprivation was huge. We stayed in Winnipeg until Monday, and then headed to Brandon to introduce Ezra to Uncle Jon and the soon to be Auntie 'Stina, and we wound up staying for night there, as it just wasn't safe for us to drive so late in the evening with so little sleep. I had my meltdown there. I just wanted to get home. But, Ezra had a great sleep (I did not, as a nursing baby sleeping for a long time is not so comfortable for the mom), and we carried on in the morning. Now, we are just trying to keep up with our kiddos and love them and make sure they are growing, healthy, safe and learning to be the kind of people we want them to be, and God wants them to be. 

Some days we are successful, and others, we are thankful for the tomorrows that come and give us a fresh start. We are so blessed with our three children, and each day is a treasure, even if we can't see it all the time.

Thanks for reading. I plan on catching up a bit in the fall now before all the activities start up again, so hopefully it won't be long before my next post.

See you soon,

 P.S. I will post pictures that are blog friendly soon, but it's time to love my family right now.

Friday, June 6, 2014

The conference - part 2

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,

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,