Thursday, March 29, 2012

My First

I look at Livi these days and see less and less of the little baby I love to cradle in my arms and more and more of the independent little lady she is becoming. Livi amazes me on a daily basis. I can't believe how grown up she is these days.

She is so goofy and funny! Always making me laugh with her funny faces, jokes, and quirky sense of humor. Are other kids this funny? I haven no idea but I love it... except when she uses it to put off doing something she doesn't want to do.

Livi has a wild and vivid imagination. I love it. She tells us stories about monsters and tulips and flying and sinking and babies and ladybugs and running and toes and mountains and numbers and anything else a three year old could possibly think up. She goes in to choruses of elaborate tales and reasons for the way things are. She is so rad.

Along with her creative reality that she sometimes lives in she has some incredible mood swings to go with it. I think she has calmed down a little... or we have learned to deal with it and help her through it better. She is still VERY good at telling us exactly how she feels and what she wants from us when she is upset. She is a passionate child in everything that she does. I think her passion will take her far in life and I'm so excited to see where it takes her.

Livi is so helpful to me. I'm starting to realize how it is so easy for parents to rely on their oldest child for help with younger siblings and around the household. I know it is inevitable to a point and the natural way, but with Jon and I both being oldest children who where relied on heavily and had very different expectations put on us from our siblings, we are trying to be very conscientious about not putting that extra pressure on Livi. Livi takes a lot of pride in helping us out, but we don't want her to think she has different rule from her sister or that we expect more from her. She is loving being able to do things on her own though. She can get her own snacks out from the snack cupboard, washes her own apples, sets the table, puts on her socks, shoes and pants all by herself! She smiles and tells us how proud she is of herself. I love watching her confidence grow!

Livi still has naps in the afternoon but is diaper-less for them! Yay! She has only had one accident during a nap since trying to night train a few weeks ago. We do still have her sleep on a soaker pad just in case. We gave up on the night training after about 5 days of fighting her to go pee in the middle of the night. She refused to sit on the toilet after being woken up to pee. It turned in to a battle with lots of tears. We were worried she was going to be traumatized or something and thought the middle of the night fighting was interrupting her sleep way too much... our sleep was suffering too. So, we will wait a few more months until we give it a shot again. Any suggestions?

Livi adores her sister, most of the time. She is so good at including her in play and telling me when she needs me to keep her sister away from her. Frequently, I hear eruptions of giggles from the two of them. I'm not sure they always know what they are laughing about. It is one of the most beautiful sounds in the world. These two were born to be sisters.

I'll end with a few quotes that I can remember from the past little while. She is quite observant with an imaginative innocence that only an articulate child can have!

While drying off at the pool, after showers in the change room, Livi looks at and grabs my boobs and says "They're not supposed to be down here. They are supposed to be up here!" Yes dear. I know. Thank you for pointing that out. 

She had an astute realization about my parenting style the other day. "You are a good mommy and a different kind of mommy and a silly mommy." Yup, she is already realizing that I'm a "different kind of mommy". She doesn't stand a chance at being normal!

After helping Daddy find some stuff under the stairs with out any pants or panties on, she comes back to tell me "Look what I found in my butt! A tinsel! And look what else I found in my butt! My finger!" She's gross. Go wash your hands Livi.

I love her. 

Wednesday, March 21, 2012

World Down Syndrome Day 2012

Down Syndrome is not a disease. People with DS do not suffer from it.
It is genetic, just as brown hair and blue eyes. It is there at conception. 
People with DS are someones child, grand-child, sibling, co-worker, friend, lover, even parent.
People with DS can contribute to society just like any other person can.
Please do not think of people with Down Syndrome in terms of what they can't do...
Look at them in terms of what they CAN do. 
They should not be underestimated or under valued.
They are human, just like you.

Last March 21 I was eagerly praying for court to happen in Bulgaria. Although that took three more months, we did get to confirm Sofie's new Canadian name a year ago today! I reread last years post and noticed that I had thought this year would have a lot more of a personal meaning to me. This is true. I thought I was an advocate for people with Down Syndrome last year. This year, being an advocate has taken on a whole new meaning.

Livi took this picture :)
I have had to take a different approach to raising awareness for DS as a parent. I can't distance myself like I could before. I can't let ignorance or malice go but I need to figure out how to softly address the issues with others to enlighten them with out being defensive. It is always personal for me now. More than before. This is my daughter's future I'm fighting for.

Since my life and family celebrates and raises awareness for Down Syndrome daily, today I'm just going to squish my chromosomally enhanced blessing a little more often. I'm also going to think of all the advocates who opened my eyes and lead me to this amazing honor of being a mom to my chromosomally deprived and enhanced children! 

Monday, March 19, 2012


Have you ever wondered what all the paperwork is that I complain about? Now that all most of the initial and major paperwork is done it doesn't seem like that much to me. It is all important and benefits us so it was well worth jumping through the hoops. It is just a lot to think about and consider.

Aside from all the adoption paperwork, which is a separate entity in itself, we had a lot to fill out for Canadian taxes and various benefits. After Sofie was legally ours and a Canadian Citizen, the real work began! In order of priority for us...
  1. We applied for her Care CardThis was very important in order to not have to pay for all her doctor appointments out of pocket! 
  2. We applied for her SIN card, Passport, and Child Tax Benefit -  The CTB is through CRA which automatically enrolled us in the Universal Child Benefit since Sofie is still under 6 years old. All parents do this with a new child. We needed the Passport quickly because of a trip to Mexico Jon's family was taking us on. The SIN card was easy to apply for with the Passport and it is needed for some of the future paperwork.
  3. We contacted and registered with the Child Development Center - Up until age five, special needs kids will get their physio, speech, occupational therapy, feeding therapies and most of the family support through the CDC... unless you get the therapy privately but that means paying for it yourself too
  4. Once her CareCard came we could register her under Jon's Extended Medical through work.
  5. We applied for the At Home Program -  If you are accepted and given a choice between Medical benefits or Respite benefits ALWAYS choose the Medical benefits. Respite funds are still available through MCFD and other resources, but no other programs cover Medical benefits like the At Home Program does. In order to be accepted in this program the child needs to be dependent in 3 out of the 4 categories. It is easier to be accepted in the program after your child is 3 years old because then it is easier to show delay and dependence and not just typical baby dependence. 
  6. We applied for the Child with Disabilities Tax Benefit -  This is important to have in order to be able to get the credits on our taxes. It also automatically looks at whether you are eligible for a monthly disabilities supplement, just like the Child Tax supplement and Universal Child Benefit.  
  7. We contacted our MCFD Social Worker - A lot of parents don't do this and honestly, I don't understand why. Once they have applied to the At Home Program (whether you are accepted or not) you have a file and a Social Worker. Your social worker can help you to get other services, like Respite which you probably won't have through any other programs, among other services. There are a few different types of respite and the best one, in my opinion, is Direct Funded Respite, to give the parents full control. I'm on the wait list for this one. Since I'm not ready for Sofie to go off for a weekend with out me, I can use this money to pay for anything that gives me a break. I could hire someone to take her swimming, do therapies with her or just to baby sit if Jon and I need to go out. 
  8. We are opening an RDSP - This doesn't quite make sense to me yet but basically, I understand, this is a long term savings plan for Sofie that gets TONS of added grants from the government. It is sheltered from affecting her disability benefits in the future as long as it is spent within the rules. 
  9. We re-did our Wills to include a Discretionary Trust for Sofie -  This is SO important! Most of us have trusts set up in our wills for our children to get if both parents were to die before they were adults. For Sofie we need to structure it a little differently and keep it in our will for our entire lives. If we were to leave a regular trust for Sofie to get at 19, she would have to claim it as income and not be eligible for disability benefits for as long as she has assets that exceed a few thousand dollars. The discretionary trust hides the money from the government by putting it in some one else's name (you MUST trust that person implicitly) to be used solely for Sofie. The other person doesn't have to claim it because it is for use on Sofie and Sofie doesn't have to claim it because technically she doesn't have access to it. Spending the money is up to the full discretion of the other person, which it why you REALLY need to trust them. This is legal in BC! They can receive this trust at any time in their life so Sofie will get her inheritance from us if we die 5 years from now or 50 years from now. If she dies before the money is spent then her beneficiaries will get the rest, her potential children or her siblings. It is also probably a good idea not to have a beneficiary be a trustee. Since they are in charge of the money, they could decide not to spend it to ensure they get it in the future. 
  10. We also applied for some community programs such as the Access card, to get free movies and entrance in to some attractions, Child Care Supplement for preschool costs, LMDSS funding for her music class/therapy and swimming lessons. There are so many grants and programs out there! I have put together a binder of resources and granting charities if you need any info!
I'm sure there will be more paperwork and programs to apply to as Sofie grows and gets more involved in different things but these were the major ones for us and probably the most important for any new parent of a special needs child! I'm not going to lie. It is a lot of paperwork and keeping things straight. You may need some sort of system. Even within some of these programs there is a lot of paper work to continue filling out, particularly the At Home Program, but it is worth it! When they pay for and deliver Sofie's diapers, wipes and very expensive Pediasures, I'll do the paperwork any day!

Saturday, March 17, 2012

Worth a Read

This story is too incredible for me not to share. When I read it, I was not a pretty sight. I was heaving, snotty, gross, not breathing crying. Every emotion was going through me. Happiness, joy, anger, amazement, sentimentality, remembrance. It is the story of a lady named Linda who is adopting a tiny 9 year old girl from Bulgaria. The condition and staff in the orphanage described from the 60's in America is exactly how I remember Sofie's orphanage in Bulgaria. The story of how Linda was brought in to the world of special needs people is incredible and unexpected. Grab a tissue.

This was taken from

Love never fails.
March 16, 2012 at 10:05 PM by Susanna
The following account was written by my friend Linda Duncan, the mom who is adopting Kolina.
Remember Kolina?
Kolina, nine years old, before she spent two weeks at Tokuda Hospital~

Have you ever wondered why some people knowingly adopt a child with special needs?
What about someone who is single, past middle age, and adopting her sixteenth and seventeenth children, who have special needs just like many of her other children do?
Every adoptive parent has his or her own story, of course.  I’ve heard many now, and am fascinated by every single one of them.
But the story behind the adoptions of this exceptional and experienced mother?  I’d like you to read it for yourself.


When I was 14 years old and just entered high school in the late 1960′s the nun’s tried to get us involved in community service. They would take us in groups to the Red Cross where we would roll bandages (can you imagine!) and we would go to nursing homes and read to the elderly people. These types of activities were enjoyable to me, but I sure didn’t find those activities very compelling.
That changed the day that they took us to Fircrest. Fircrest is the State School for the Mentally Retarded. At least that’s what they called it then. Today it’s just Fircrest and the conditions I will describe, thankfully, no longer exist there.
When we first arrived I was struck by the long low buildings that I later learned were used as army barracks in the 1930′s. There seemed to be 20-30 of these buildings on the expansive grounds. As we entered the first building, the stench that hit when the door opened seemed as though it were a solid wall rather than air. It smelled of a combination of urine, feces and vomit. The second thing was the sound. Moaning, yelling, grunting, but interestingly enough, no crying. Then my eyes focused in on the children in the huge room.
Lying on the floor with blankets rolled into dividers were about 20 children of various ages probably 8 or 9 years old through 20 years old. These children were lying on the floor in between the rolled blankets. Most of them wearing just a large cloth diaper and hospital gown. Many of the children were bent in odd shapes, which later I learned they had Cerebral Palsy and their limbs were not broken as I had at first thought but contorted due to their CP. Many of the children were having seizures. The few caregivers that were there seemed oblivious to the “fits” as they called them. And some of the children seemed to have several while we were standing there.
The guide then took us to other buildings where we saw some older “children” who were obviously mentally retarded, but were able to walk and talk and they seemed very bored, but very happy to see visitors and wanted to touch our hair and clothes.
One of the buildings had the “water babies”. I thought that sounded kind of pretty and expected to find angelic little children floating in a swimming pool. What a shock to find out what a “water baby” really was. These were babies with hydrocephalus and since the shunt had not been invented yet, these were babies and children with heads with 25″ and larger diameters. Their heads were so big that it took 3 people to change their sheets because if someone moved the child without help they could snap their necks. It usually took 3 people to lift the child because their heads were so heavy. Oddly enough there were a few chldren that had lived 10 years and could talk. It was very surreal. We were told that their heads would just finally “explode” from the build up of the fluid.
As we left that building I was beginning to wonder if there was a place for me, when we walked into the buiding that has forever changed my life. By that time I was getting used to the smells and the noise, so I don’t recall either when walking into the last building.
Same large room as the other buildings but this one was lined in cribs. There was a long row along each wall and a kidney shaped table and chairs in the middle of the room. In each bed was a baby with Down Syndrome. The children in this room ranged in age from birth to four. I remember walking away from the guide and the group of my friends and walking down this long row of cribs and looking at all these babies and thinking that they were the most beautiful babies I had ever seen.
There were between 20 and 30 babies in this room and what struck me was that there wasn’t one noise. The ones who could sit up were rocking back and forth and flicking their hands. The babies who weren’t sitting up were just lying there.
I listened to the guide talk about these babies who would never walk, never talk, never feed themselves and that their life expectancy was 13 years old.
And then I saw her. A little blue eyed blond baby girl sitting in her bed watching the shadows on the walls. This was Coleen.

The next seven photos are of a teenaged Linda Duncan with Coleen~

I asked if I could hold her and they said sure. There were so many cribs and no space between them that they had to move several down in order for me to get beside her crib to let the side down.
From that moment I spent the next two years coming to Fircrest as many weekends as I could convince someone to drive me the 20 miles from my home. My parents could not understand why I was drawn to these babies.
My parents were foster parents and from the time I was 10 until I turned 19 my parents always had a healthy newborn in our home. Until I had that first day at Fircrest I was always pushing my parents to adopt one of the baby girls so I could have a sister. (I had 4 brothers.)
Once I met Coleen I began pushing my parents to adopt her. Her parents had given her up at birth and I had talked to the administration and was told that yes, it was unheard of , but she could be adopted if someone wanted to.

My parents told me that people put children like her in institutions for a reason. You don’t bring them home. I wasn’t convinced.
When I started visiting Coleen, she wouldn’t look at me, couldn’t stand, couldn’t talk of course, and actually I didn’t hear her cry.
I would sign in each week as a volunteer to work in her building, but soon it was obvious to the two women who worked weekends in her building that I was there to be with Coleen. I would help with the other kids, but as soon as all the diapers were changed or babies fed, I sat in the only rocking chair holding my girl and singing and talking to her.

The women who worked there would chuckle at me when I would stand Coleen up against the wall and try to get her to stand there alone. She would flap her hands and make a distress noise, but I persisted and it wasn’t too long until I could stand her up at the wall and move back and put my arms out to her to beckon her to come. Her little knees would lock and she would screech in protest, but she began to trust me and although it took a long time before she would take a step it didn’t take too long for her to reach her arm out for me to pick her up.

Meal time was structured for the two workers not for the kids. They were brought from their cribs and put in chairs around the kidney shaped table. One worker would bring the kids and tie them with a large cloth diaper around their waist to keep them upright in the chair. The other worker would have one bowl and one spoon and she would start at one end of the table shoving the food into one mouth after another and then go back to the first child with their second bite. The other worker would then start taking the children out of their chairs and put them back in bed and bring the next round of kids. Bottles were propped – some could hold their own.
They laughed at me when I would sit her down at the table and bring baby food from home and give her a spoon while I would guide her hand from the bowl to her mouth. “Even if you teach her, we can’t take the time to let her feed herself. She only does this when you’re here” And when I would hold her in my arms and feed her bottle, they would say the same thing, “You’re the only one that has time to do that. The rest of the time it’s propped.”
None of the children had their own clothes. They only had cloth diapers and hospital gowns. So on the weekends I would bring my doll’s clothes and dress her in them so I could take her outside. (I had a Patty Play Pal doll that wore size 3 clothes that my mom had made a small wardrobe for me for Christmas. )

By the time I had been there for two years Coleen was walking, feeding herself and she had one word. “Mama”. The workers assured me that word was reserved for me because she only said it when I came or when she was rocking herself to sleep at night.

The staff was amazed at her progress, but they said that it was easier for them before she was doing those things. Even as a teenager, I thought that was a very sad statement.
When I would get there, and she saw me coming across the room, she would sit rocking in her bed and start chanting “Mama, Mama, Mama.” Then when I would walk up to the crib she would squint her eyes, smile and reach her arms out to be picked up.

One day when I came home from school I was told that there was some very sad news. I was told that Coleen had died suddenly. I demanded to go to Fircrest to see her, I wanted to go the funeral, I wanted to know why she died. I was told that there was no funeral beause she had no family and that she was buried already.
I buried her in my heart.
Some how my life went on. I got married, had two babies of my own and as those two kids left home I started foster care. My pictures of Coleen (there are only 9 of them out of my friend, Christie’s Brownie camera) were always in my bedroom and everyone who knew me, knew the story of Coleen.
When I started foster care I asked that in my profile that they keep at the placement desk that I would really like to have a child with Down Syndrome. I did get placed with my Jacob 6 years later. He was 6 months old.
As Jacob neared his fourth birthday, which was the age that Coleen died, I had the overwhelming need to go back to Fircrest to see if I could find out why she died and if there was a grave I could go visit.
Fircrest Administration was very understanding and respectful when I shared my story, but they told me that if she died in the 60′s it was way before that information was computerized and there would probably be a paper record somewhere but all the information was archived.
When they saw my disappointment they referred me on to a kind man, Bill, who said that he would make a few phone calls to people who were around back then and see if there was anyone that remembered Coleen. I gave him her full name and birthdate and left feeling like there was little to no way I would hear any information.
Six weeks later I got a phone call from Bill. He told me that he might have located someone who remembers Coleen, but could I send a copy of the picture of her so she could be sure. I sent the pictures to Bill and waited.
Bill called a week later and said, “Call this number and ask for Linda, I think she can help you.”
So I called and started to explain to Linda who had answered the phone, “Kitsap Residences”, and suddenly she called out, “This is the woman looking for Coleen!” I said, “Excuse me?” She said, “Coleen’s here!”
Well, of course, I thought it was impossible. I thought it was a very cruel joke, but Linda insisted that they were very sure this was the same person.
The decision came from that phone conversation that I needed to go the 60 miles to Port Orchard, WA to see if this person they insisted was Coleen, was truely MY Coleen.
The first visit with Coleen – May 9, 2005
For the few days leading up to my visit the staff at the agency that cares for Coleen would call me with things that I needed to be “prepared” about.
For example they said she might not tolerate more that two minutes. She hasn’t had any visitors for at least the 15 years that she has been connected with this agency. No friends, no relatives have come to find out what happened to her.
They told me that since she is non-verbal she might just walk into her room and shut the door – visit over
She might walk me to the door – visit over
She might spit in my face – visit over
She might slap me – visit over
And then there was the picture that came that was meant to “prepare me” for what I would see. This picture was the best one they could get of her and it was dreadful. She was mostly bald with a few wisps of hair, but that wasn’t the worst part. Her eyes, her face were the saddest I’ve ever seen, and I’m a person used to sad faces on all the foster children who’ve come to my home over the years.
But the exciting news was that it was my Coleen! No doubt in my mind.
Over the next few days, including Mother’s Day on the day before my visit with her, I had lots of preparation from my family. My younger twin brothers and their families were at my house for Mother’s Day and they told stories of me begging my mom and Dad after Mass on Sundays to take me to Fircrest. I even told them I’d walk home, but of course they would come and get me.
Monday was agonizing – waiting for the time the babysitter would arrive so I could leave. I walked across the Bremerton ferry and took the foot ferry to Port Orchard where Debbie met me. Debbie has worked at the agency for 7 years and was chosen as my chaperone to visit Coleen because they felt she knows her best on a day-to-day basis. Debbie worked for 5 years – 40 hours a week with Coleen and now Debbie is the supervisor of the building that Coleen’s apartment is in.
But, apparently there was more preparing me to be done, because the 20 minutes ride from the ferry dock to Coleen’s apartment was spent telling me what to expect. Things like – “In all the year’s I’ve known Coleen, I can count on one hand how many times she has hugged me or someone else that works with her. “ And “ In all those years we haven’t been able to get her to sit still for a picture or catch her smiling”. I believed that one already because of the picture they had sent me. And she reminded me that she is non-verbal.
She also glanced at the photo album of the 11 pictures I had of Coleen and me from the 60’s and told me that Coleen doesn’t look at books. She doesn’t look at pictures. I told her that was ok because all I wanted was for her to have these eleven pictures of her childhood. That one day back in the 1960’s of my friend, Christie Brown, taking pictures of Coleen and I together are the only pictures Coleen has of her childhood. I had blown up the eleven pictures to 8 ½ x 11 and put them into an album with some extra blank pages that I hoped would be filled over time with more pictures of her. I had brought my Polaroid camera in hopes that I could leave that day with one of her and me together again.
I told Debbie that I would take her lead and if she thought Coleen had had enough of a visit that I would go.
By the time I walked into the apartment I was “prepared enough” to only hope for a glimpse of Coleen and then be whisked back to the ferry.
When I walked in, Coleen was in her room sitting on the bed, legs straight out rocking back and forth. She had a wad of clean socks clutched to her chest and she was looking at the wall.
Debbie said, “Coleen, I brought you a visitor.”
Coleen didn’t look up she just rocked faster. I walked into the room and stood near the bed. I could barely find my voice to say, “Hi Coleen”.
I started just talking softly about the pink tennis shoes she was wearing and then started telling her that I knew her when she was a little girl and that I brought some pictures for her to look at.
I opened the photo album to the first page. I said, “Coleen, look at you! This is when you were just a little baby girl.” Her eyes darted just barely noticeably and then, away again. “Look this is when you were a little girl and now you’re a big girl, and this is me when I was a little girl and now I’m bigger too.” Her eyes turned towards the book, though her face was still towards the wall. “Look, weren’t you a beautiful baby?!” She stopped rocking and turned to look at the picture for just a few seconds. Debbie gasped! Coleen tried to turn the page, but she couldn’t she started getting anxious.
“I’ll help you,” I said and turned another page. Coleen bent over the picture looked up at me, then at Debbie and smiled. The same little crooked smile she had 38 years ago.
Then as quickly as it appeared it disappeared and she started to rock.
“Keep talking to her, she’s listening”. Debbie barely whispered.
So I spoke on about the pictures and that day. How we went outside for a walk and how she was so little that her legs got tired and I picked her up and carried her. And how we used to play and how baby Coleen used to hug me. I showed her a picture of us with her head on my shoulder and her little hand hanging onto the lapel of my coat. She looked at that picture and studied it. Then she looked up and smiled. “That makes me smile too, I said. – Suddenly the hand came up and she slapped me in the face and she started rocking violently again.
“I think that’s enough pictures for now. “ I said
Debbie suggested that she make some coffee and see if we could get her out of her bedroom and into the dining room. Coleen wouldn’t come out so after a few minutes I went back in to talk to her. This time I stood at the foot of her bed and her feet were pointing off the side. I had my hands on the footboard while I spoke to her.
I started talking again about when she was a little girl and how I used to love to play with her. She kept rocking but her hand left the wad of socks for a fleeting second and came to rest on my hand. Then she pulled back quickly. I kept talking. A second time she put her hand on mine this time for a few seconds longer. I could hear Debbie shifting in the doorway to Coleen’s room trying to get a better look. I put my hand out, palm out and said, “Will you hold my hand, Coleen.” Several seconds later the little hand came up and rested on mine. I felt like I had a handful of gold! Debbie let out a little gasp and Coleen spit at Debbie and then at me.
I backed off and told her, it was ok, and I’ll go check on the coffee. I walked out to the dining room with Debbie and she asked me how I was doing. Although I was emotionally exhausted I was more interested in what she thought about Coleen’s advances toward me and the smiles we had seen.
“I don’t know what she remembers, but it’s obvious she’s remembering something about you, or the pictures, or that time. Keep talking to her; I think it might be your voice. She seems to recognize your voice and she’s really listening.”
I walked back in again alone and walked to the side of the bed. I asked Coleen if I could sit down, and since she didn’t spit at me, I took that for a yes. I sat on the edge with her legs stretched out beside me. She was rocking again and seemed calm so I started talking to her.
“Coleen, I have loved you for a very long time. I loved you when you were a baby, and I love you now that you are a big girl.”
“There was a very long time when I was very sad. A long time ago I lost you.” (Her rocking slowed) “I couldn’t find you. I looked everywhere to try to find you. I’ll bet you were very sad too.” (She stopped rocking and looked at me out of the side of her eyes with her head still bent toward the wall)
“But I kept looking for you and then I found you and now I’m very happy!” At that moment she turned her head toward me with a big smile and threw both hands up in the air like she was saying ‘What a great ending to the story!’
But just as quickly the hand came up again and hit me and then the spitting started. I rose slowly off the bed but stayed right next to the bed.
Debbie who had been standing in the doorway watching came into the room and told Coleen that spitting on Linda wasn’t very nice. Coleen’s rocking slowed back into her comfort speed.
I sat down on the bed again and laid my hand on Coleen’s ankle and put another hand on her back. I told Debbie, “I have a dilemma about something. Coleen didn’t know me as Linda, she called me “Mama”.”
Coleen stopped mid-rock and bent over to my face and studied it and then she said, “Bama”! Then she started rocking and chanting, “Bama, Bama, Bama, Bama” She smiled, she paused long enough for me to say, “That’s right Coleen, Mama” She started chanting again, and I started chanting with her. It went on for several minutes.
Debbie’s lower jaw hit the floor. When she could speak she said, “I’ve heard her do this before. But we didn’t think it meant anything! I used to work swing shift and help her to bed. That’s what she says when she’s going to sleep! I’ll bet after you stopped coming that became her way to comfort herself!”
Within a few minutes, Coleen had stopped chanting and was rocking steadily and more slowly again. I walked into the kitchen with Debbie to regroup. I looked at the clock and it was almost time for me to leave to catch the ferry as I still had a three-hour journey home and I needed to be there to put Jacob down for the night.
I asked Debbie about the Polaroid Camera. I was really hoping to just get a shot of Coleen and myself next to each other for her photo book. Debbie thought it was worth a try but reminded me about the difficulty of getting her to hold still and catching a smile was probably too much to hope for.
It was Coleen’s dinnertime and she was called to the table. She sat down in her chair and grabbed her spoon with the palmer grasp of a 12 month old, bent her head to her plate and shoveled in a mouthful. Her chewing was practically non-existent as she mushed the food between her tongue and her palate.
When she was about half way through, Debbie said, “Coleen, let’s get a picture of you and Linda.” No response, she just continued eating. Debbie and I joked about her priorities being straight – food first, pictures later.
Debbie glanced at the clock and said “If we’re going to do this, we better do it now”
At the risk of getting cooked carrots spit in my face, I knelt down next to Coleen’s chair and said, “Just go ahead, as long as we’re together. I just want both of us in the frame together.”
“Coleen, let’s take a picture of you and Mama.” Debbie said. Coleen put down the spoon, put her cheek right next to mine and Debbie shot the picture. “Take more,” I said between clenched teeth…Debbie got two more pictures before Coleen pulled her plate back in front of her and resumed eating.
Debbie and I glanced at the clock and Debbie said, “Coleen, we have to go now.” Coleen threw the spoon across the room and stomped her foot. Then she dropped her head to her chest in a typical two-year-old pout.
I knelt down beside her and she slapped me. I grabbed her hand as gently as I could and said; “I told you that I was so sad until I found you. I’m going home now, but I promise I’ll be back. I’m not going to lose you again.” She smiled, stuck her hands into the food and started eating again.
Finding Coleen again has been one of the biggest blessings of my life. Since that first visit, she has spent weekends at my house, has spent Christmas with us and even took her very first vacation ever with us.
She still has only one verbal word, “Mama’ which she uses alot, and when I disappear from sight she grabs my 12 year old’s hand and pulls her down the hallway chanting, “Mama, Mama”.
Coleen during her first overnight visit to Linda Duncan’s home~

…what she has done for my life is give me the drive to save at least one little girl from having the life that Coleen had. I couldn’t save her, but I can find one little girl with Down Syndrome and pull her from a life in an institution and give her a family that loves her.
Kolina after Tokuda Hospital~


Thursday, March 15, 2012

7 Months Home!

Sofie has been home for 7 months now! I looked at her this month and saw a little girl, not the baby that I'm used to seeing. She is growing up and going to be such a beautiful young lady.

 Feeling violated...

So are you wondering what is new this month?!
  • Sofie is so good at giving us hugs now. It is so nice. One of my favorite times of day is night time cuddles with her. We lay down on her big girl bed looking at each other and touching each other's faces. Then I pick her up and she snuggles in to my neck giving me hugs, while I rock and sing to her. 
  • Her language is continuing to take off yet not consistently. We hear her say new words one day then not again for quite a while. This month we've heard her say Uh-Oh, Hat, Wow, Sleep, and Down. Her words are muffled and even I have to listen carefully but she is saying them!
  • She has started singing! She sings parts of her lullaby with me, in her own way. I love it. She sings notes at music class too.
  • We left her over night for the first time this month. She did great. She had lots of fun with my sister. No out of the ordinary behaviors. She even smiled and came over too us for a hug when we came home!
  • Sofie hardly ever pulls hair any more. She grabs glasses so much less. She still hits but not as hard and hurtful as she used too. I need to focus on that when she is tired or hungry and her behaviors get exasperated. 
  •  She did a somersault! It was so cute. I wish I had got it on video. We were watching the dancing on Footloose and she was copying ... which ended up being bouncing on all fours and doing somersaults. 
  • Sofie has been working really hard at gaining weight and growing bigger. We saw a dietitian last month and now have her on one Pediasure a day, along with lots of healthy calorie rich food. I have even gone so far as to mix her juice with whip cream! Although she loved it, she is still not gaining enough weight or height. She is still 33 inches and 24.5 lbs. I don't know what the dietitian is going to say or suggest on Monday. She is not unhealthy. Her BMI is good now, and she is on the charts but there is some concern as to why she has not grown and almost stopped gaining weight.  

Monday, March 12, 2012

Bedtime Success!

This last week with bedtimes have been wonderful! Livi has realized we mean business and I think with the slightly later bedtime and extra attention she gets she is feeling more secure and tired! Hooray! I get to keep nap time for a little while longer at least!

The first night or two of our new plan sucked, but we kind of expected that... although hoped it would be a breeze. We start getting Sofie ready for bed around 7. Her routine, getting changed, pediasure, brushing teeth (when we remember), cuddling in her big bed, rocking in the dark, then bed, takes about 15-30 minutes depending on how quick we are being. We start getting Livi ready for bed between 7:30 and 7:45. She gets changed, a story or two, bathroom and bed. She sometimes tries a few excuses to stay up. Who can blame her? She is three after all. For the most part she goes to sleep quite easily now with only no need to go in there after she is down for the night!

I was feeling so confident with our new found success that I decided to tackle the issue of night time toilet training! Finally.

Before Sofie came home Livi was consistently dry during her naps and frequently in the mornings. Because we were leaving for 2 weeks and the disruption of a new sister, we figured it would be a waste of our energy to try toilet training before we left. We were right. With Sofie home Livi began having accidents during the day, and was no longer dry during naps or night.

We decided to give at least 6 months before we even started talking about it with Livi. Unfortunately, during these 6 months, I think Livi got used to going in her pull-ups. She would consciously go in her diaper when she was awake even. So frustrating.

With the success of this week., we decided to go for it. Cold turkey, we stopped using pull ups. Night number one was a bust. We tried to wake her up to pee but she fought us all three times and woke up wet twice. Nap time, in our bed scared me but she was dry! Night number 2 had only one accident and successful toileting twice! Nap was again dry! Night number three had Livi getting up twice, all by herself, to tell us she had to pee! YAY! YAY! She did have one accident at 5:30am but she had been up at 5 to crawl in to bed with us saying she didn't have to pee. We let her go back to bed with out pushing her to go to the toilet. I think her body did wake her up but she fought actually going to the toilet.

I'm thinking this is going to be easier than I thought! It wouldn't be as easy with out those soaking pads used for extra coverage on top of sheets. Her accidents have been small enough that we haven't had to even change her sheets! It is all contained on the soak pads! I got one at Toys-R-Us and a few left over from my Grandpa, but I'm sure you could find them at Walmart or Rehab stores! Can't recommend them enough!

Thursday, March 8, 2012


Yesterday, I started noticing that I was getting random comments from people all across North America on my blog. Since this is just a "Mommy blog", written as a journal to keep myself sane and let interested family or friends keep tabs on us, I usually know most of my readers. After some investigation I discovered that our adoption story was mentioned on a very popular blog who has a huge fan base! Crazy! I got about 1000 page views yesterday! That is a big jump from my usual 50 views. I feel like I should try to write something profound to greet you all instead of my boring update post :)

Anyway, I just wanted to give a shout out to the Design Mom for mentioning me in her post and giving me a little claim to fame!

Monday, March 5, 2012

Good News!

Life is settling down and we are getting in to a new rhythm. Everyone is just about healthy. Jon and Livi have a little bit of a lingering cough. Jon is going back to the office after working from home a lot last week. I don't mind him working at home one or two days at a time but nearly a whole week is a little much. It throws off our schedule and revs up the kids for Daddy's attention when he has to work. 

By the end of this month our schedule gets busy again. I never though we would be "that" family. You know the kind that has each kid in some sort of extra curricular activities every night and is running around to get to them all. I didn't mean to. It all just creeped up on us. Everything fits in really well and we get some funding for a lot of it so we aren't even out much financially! I'm feeling pretty blessed! A lot of the reason that I let it get so busy is because I obviously want the best for my girls and want them to have every opportunity. For Sofie, I feel like I'm doing catch up. She was so deprived for so long we want her to benefit from all there is to offer. Everything she is in has a purpose and they just happened to happen at the same time. Maybe she'll nap better now that she is busier!

Livi is in preschool Tuesday's and Thursday's. Wednesday morning she has Dance. A half hour after Livi's Dance, Sofie has an Occupational Therapy play group through the CDC for 6 weeks and is only costing us $10 for materials. Thursday's, starting again after Easter, Sofie has her Music Together class which is SUCH AMAZING therapy for Sofie for we will be continuing this as long as she needs. Thankfully, half the cost is getting subsidized by the Lower Mainland Down Syndrome Society! Saturday's are busy though. At 10:30am both girls have swim lessons. Livi is entering her first swim level and Sofie and I are going to be in a Parent and Tot class. Hopefully, I'll get a week or two off though and Jon can take Sofie so I can watch Livi! Sofie's lesson's will also be half covered by  the LMDSS. Then Saturday afternoon Sofie has Special Olympics ActiveStart which is basically fun therapy to help her learn to run and jump! This only costs $20! Awesome! 

I have some super amazing news for the girls! Remember my preschool dilemma? Well it was all fixed today! We decided a while ago to put Livi in 3 year old preschool, two days a week when she was 3.5 years old. She started in February. She goes to the school around the corner from us. It is a little chaotic and she is already above the curriculum they teach the four year old's, but we decided on it for purely social reasons. We wanted her to develop a bit socially. Today, I just go word that we got the money to send both girls to the Montessori school that we really wanted was way out of our price range! With Sofie's special needs top up we are only going to be paying $60 per month for both girls together! (Not each!) The girls will only be going 3 days a week, rather than the schools desired 4, but that was our choice. We didn't even apply for 4 days of funding. I don't think any of us are ready for 4 days a week yet, plus Sofie only gets an aid paid for 3 days a week. 

I am so excited for them. Thank you Child Subsidy! I have high hopes for this school and it has a great reputation. They are going to challenge Livi academically, while going at her own pace as the Montessori style is known for. It is calm and very structured, which is the kind of environment that Sofie will thrive in, plus they regularly use sign language! I also liked how they teacher approached Sofie. She shook her hand and talked to her, where the teacher at Livi's current school frequently babies her a bit. I don't mind her getting babied. She needs it right now. But, from a teacher who knows she is almost 4 years old I really appreciated the age appropriate response. 

We are finally just about all caught up with our finances, after being so far out with lagging medical bills from before Sofie had her Care Card and the transition and wait times for pay periods from Jon being on parental leave and returning from work thanks to our tax return! We will also finally be getting the disability supplement we've been waiting for. It will be a monthly payment but it work retroactively too! Yay! We are finally out of our line of credit... That is not to say we are out of debt! We still owe on most of the adoption and Jon's school loans. It never ends. But, tonight I am feeling less stressed about out money. We can finally redo our will to include the Henson Trust which we need for Sofie and I can get the crown I've been in need of but couldn't afford for a few months! Some will be put aside for a small vacation this summer and the rest will be off to debt... Waaa waaa. 

Sunday, March 4, 2012

A Night Out... FINALLY!

Friday night Jon and I got a much needed night out. We haven't been out on a real date in over seven months, since before Sofie came home.  Jon had got to let loose and spend the night in Vancouver once and we'd been out separately for a movie or dinner with friends a few times. We hadn't done anything together aside from one evening at Christmas to a staff party... but that wasn't exactly my idea of a relaxing date :)

My sister's and mom all graciously helped out with watching the girls. Sessa took the first shift until before bed time and Liz slept over. Mom helped out where she could! I am so grateful. I really needed a night where I felt completely relaxed. I got that. Sofie was ready to be with out us for a night. I was confident my kids would have fun. I even got the pleasant surprise that Livi went to sleep with no bedtime issues! Why do kids act so different for their parents?

Anyway, Jon and I went out to Langley for a little shopping at my favorite clothing store because I am needing some new pants and had a gift certificate from Christmas. (I'm officially down over 20 pounds in 7 weeks with the PINK method and down a size!) I didn't buy anything because they didn't have the pants I wanted in the size I needed. I showed great reservation and saved my certificate for next time. Then we went for a coffee and sandwich date at the coffee shop across the street before heading in to Vancouver for the night. Our dear friends helped us celebrate our momentous night out and took us for some seriously delicious tapas at an Italian restaurant in Gastown. The evening was filled with interesting stories, laughter, drinking and relaxation. We even took a drive through Stanley Park in search of purring raccoon's. We slept over at their apartment and enjoyed a delicious breakfast to top it all off. 

It was exactly what I needed. I enjoyed myself immensely and when I woke up in the morning I found myself not wanting to go home yet... by the next morning I'm usually yearning for my bed and anxious to check in on my kids. When we did get home we were greeted by big smiles and hugs from BOTH kids! Sofie showed us a very appropriate response to seeing us again after her first 20 hours away from us. I was worried she would not care that we had come home but she smiled, and came to me for a big hug! Thank you every one who helped us have a real night out! I feel so blessed and ready to face the next 7 months!... I hope it isn't that long again!

Saturday, March 3, 2012

Bedtime Battles

Bed time battles with Livi suck. We have been having them, to some degree, for months. These last few weeks seem to be particularly difficult. We don't know what to do with her, for her, or even too her. She can have the attitude and stubbornness of a PMSing, bi-polar, 14 year old... and I'm NOT exaggerating. She will throw herself to the ground and ignore us. She will come up with every excuse in the book to get us responding to her some how. She will kick the walls to make noise. She will toss books in to Sofie's crib to "give her something to read", but te books sometimes hit Sofie in the head. She will give us attitude... Not just 3 year old attitude, but the kind of attitude you get from a 16 year old who knows she is almost an adult and testing the limits. She will mimic what we say in a sassy voice. She will yell. She will do the exact opposite from what we tell her to do and then give us a look "daring" us to do something about it. SERIOUSLY!?! And all this is within the half hour we are trying to get her to be quiet in bed trying sleep! It really makes for some bad parenting some nights.

Is this normal 3 year old behavior? Are other parents experiencing bed time battles like this? She can have attitude during the day but not like this. Generally, she is a pretty awesome kid! Just not when going to bed.

What do we try after we have already attempted reasoning, giving extra attention, bribing, ignoring, allowing natural consequences, and giving consequences? What comes next after we have given a time out, talked and reasoned with her, threatened consequences, acted on those consequences by taking away her Elmo, fuzzy, pillow, her cartoons or privileges for the next morning and, I'm ashamed to say, even flicked her? We've exhausted all of our parenting strategies. (We will not spank our children. We think it is wrong and damaging. I know flicking her on occasion is hypocritical of us and a form of corporal punishment, which is why I am ashamed of trying that method of parenting. We were at our wits' end.)

I know many people might suggest cutting her nap out all together but I'm not entirely sure that is the answer either. Livi has always been a good sleeper and been on the higher end of the scale for hours of sleep need than many of her peers. I'm the same way. While many people only need 7-8 hours of sleep, I am never fully rested unless I've had a good 9 hours. Livi is fully operational on 12-13 hours of sleep. (11 at night and a 1-2 hour nap.) I think cutting her naps out might disrupt her cycle to much and result in being over tired. She is yawning by 1:20pm most days. When we lay down for a nap she is almost always asleep within 10 minutes and then sleeps for 1-2 hours.

I am starting to try something different. I gave her the option of napping. She naps with me in my bed because naps don't work for either girl if they are together and Sofie NEEDS her naps. I brought some puzzles and books in to my room and lay them on the floor beside the bed. I read her a book as usual and told her that I wanted her to lay down for 10 minutes for some quiet time. If she didn't want to sleep she could quietly read the books or do the puzzles while Mommy slept. Well, she has fallen asleep each time and slept for over an hour each time.

For bed time, I told her that because she was a big girl, she gets to stay awake later than Sofie. After Sofie was in bed I cuddled with her in my bed, read her a book, got her to get in her pj's and go to the bathroom then one more short book before I put her to bed in her own room. We still had a battle that was just as intense as usual but it is much shorter. We only "fought" with her for 15 minutes instead of the usual 45 minutes. I hope that things keep getting better and that this really does work. I honestly don't know what else to do if this doesn't work.