Month: November 2012

Living With DS: Then & Now (Day 4)

Leave a comment

People with Down syndrome live very different lives now than they did one hundred years ago or even 50 years ago… in Canada anyway. Sofie came from a country that is many years behind Canada in how they view people with different abilities. They are very similar to how Canada was.

Then:
People with disabilities were not seen as real humans. They were hidden away from society and placed in to institutions. Parents were told that it was the best place for them. A place where they could be taken care of by the doctors and health care professionals. The parents truly believed they were doing the best thing for their children. Here is a link to a past post of a letter from a parent sending her son to Woodlands, the local institution that was phased out and shut down for good just 15 years ago.

http://www.afamilybecominghuman.blogspot.ca/2010/11/letter.html

Institutions were similar to prisons… big common rooms, cold walls, sterile rooms with little to no personal belongings. Food was served cafeteria style. The people who lived  there frequently had no concept of how food got made. It just appeared. There was no community inclusion, no jobs, no future. A few high functioning individuals were able to help with tasks around the institution, like laundry, but nothing outside the walls.

Staff were minimal and rotated. People were kept in cribs for their usually short lives and had mangled tight limbs because of it. Or they may have been locked up if behavior “required” it. Abuse was rampant. Care was based on what was easiest for the staff, not the individuals. Entire mouths of teeth were pulled if they bit anyone. Lobotomies where regularly preformed. Corporal punishments were acted out to the point of breaking body parts. I’ve worked with individuals from Woodlands who are afraid of running water because they would be sprayed with either cold or scalding water from a hose as a form of a shower and had undocumented scars. Death was imminent. The average lifespan of an individual with Down syndrome 60 years ago was just 15 years old.

This is a video of pictures of Woodlands after it had been shut down for 15 years…

Now:

Things have changed for our angels… at least in Canada. There is inclusion, respect and care. I’m not saying our society still doesn’t have some work to do and attitudes change, but we have come a long way.

Individuals with special needs and Down syndrome are raised with their families. Families are given support to aid in the extra challenges that they may face. They are included in typical classrooms and have goals to one day get a real job! There is wheelchair access almost everywhere too! (Inclusion is a bit of a larger and complex issue which I do recognize and am not going address in this post… stay tuned though!)

As adults, individuals may choose to stay with their families or follow the normal way of life and set out on their own. There are many options such as supported independent living, living in a home share setting with another family, or a group home if the needs are more complex.

Although many people in our society still see individuals with special needs as weak there is an attitude of respect from most.

People with special needs or Down syndrome born in other countries are not so lucky. This is part 1 of a documentary done on the state of the institutions in Bulgaria a few. There have been improvement since the media coverage of this documentary but definitely not enough. Surrounding countries have also not followed suite. This is where Sofie came from… I’ve read the current average life expectancy of a child with Down syndrome in Bulgaria is 8 or 9 years old.

This is a bit of a weird post to write and think about. It isn’t always pleasant thinking about how things where then, when we are mostly happy with the way things are now. This is something that is very real though and still affects many of our peers and people in our society. My home share sister, Maggy, was one of the few who was not placed in Woodlands, (she is 45 yrs old now) while her peers were. Her mother decided to keep here. Sofie would have seen this institutionalized fate if she were not adopted. She was already severely malnourished and neglected. She also has a scar that was not documented anywhere. I think it is good to remember and to keep moving forward. Support the healing and never go back.

Adoption & Choosing Down Syndrome (Day 3)

4 Comments

This is a post that I have thought a lot about but still don’t have a clue how to start it or what to all say. This is the topic that is so dear to me that I rarely share my true emotions with those around me because I know some of my points of view offend people. I don’t think this will be my best post ever but hopefully I get my thoughts across!

We adopted Sofie from Bulgaria. She was just about 3.5 years old when she came home with us in August 2011. She only weighed 19lbs, had dark circles under her eyes, a bald patch of hair on the back of her head and a raw, open, sore rash all over her bum. Shock of all shocks, she has Down syndrome… and we requested a daughter with Down syndrome!

 Jon and I always intended on adopting a child with special needs. It was something we were committed to early on in our dating relationship. He has his own story about coming to that decision. For me, it was my home share sister, Maggy, that really influenced this choice. I had talked about adoption since I was young, but it wasn’t until Maggy came when I was 16, that I wanted to include a differently-abled person in my own family future. When Livi was 18 months old, I tentatively suggested that maybe it would be kind of awesome to adopt another little girl sooner than later. He stopped for only a second to think about it, then wholeheartedly said “I think that could be kind of awesome.” We are truly blessed to have been so well matched for each other in the parenting department. We agree on almost everything when it comes to our kids and how to expand our family.

Aunty Maggy and Sofie 

The whole adoption process only took 18 months from start to finish. That is very fast by adoption standards. The reason being is we didn’t have to wait for a referral of a child. There are thousands, if not millions, of children with special needs and health issues waiting for families that people don’t even consider. People will pay tens of thousands of dollars and put their bodies through hell with fertility treatments, then as a second choice wait years and years on a wait list for a “healthy” baby to adopt. I don’t get it. Seriously, I have a hard time understanding and empathizing with this way of thinking.

Here is where my really inflammatory views come in…  The world is grossly overpopulated. Humans are sucking the Earth’s natural resources dry. The Earth can not sustain this ballooning population, especially in our wasteful society. People have too many children while there are millions upon millions of orphans in the world. It was one thing to have a handful of kids 100 years ago, with the mortality rate so high and young as well as needing a large family to work on the farm. It is quite another to have numerous children this day and age for our own desires. If society would change their attitude about adoption being a second choice, the world might not be so overpopulated and there wouldn’t be so many orphans in the world.

I know my thoughts on this are different than most and I’m not trying to offend or judge people… unless you have 10 birth kids, then I might judge you 🙂 It is just something that I do feel strongly about. We are all different and think differently. Maybe I just don’t fully understand. I know I don’t understand the struggle with infertility because it is not something I’ve ever had to deal with personally. From the various reactions that our family gets, I know that many people don’t really understand us. It is obviously a complex issue that is emotionally charged… maybe I should delete these last paragraphs, but that would be very unlike me.

 

Adoption was NEVER a second choice for us and Sofie is perfectly healthy! Down syndrome does not mean the person is sick, unhealthy, diseased or even really disabled. Jon and I wanted to expand and grow our family through adoption. Plain and simple. Just as a couple might decide to try and get pregnant, we decided to adopt. Our only parameters were that she was a little girl, born in 2008 or later and had Down syndrome.

I don’t really know how to make people who don’t understand our reasons for choosing Down syndrome get it. We’ve gotten some pretty amusing and angering responses when we have told people we were adopting or have adopted a child with DS. Wide eyes, responses like “Why would you do that?”, “Did you know she had Down’s when you got her?” and “We only want more like Livi” were spewed back to us. Depending on my mood and temperament at the time, I handled each response differently with or without the grace that was required.

Honestly, my best answer right now to why we would choose a child with Down syndrome is “Why not?”  Why not choose this precious child? Why is it better to choose a child that society views as ‘perfect’? No one is perfect – each of us is unique. In a way, Down syndrome was the easy choice for us because I had so much experience with extra chromosomes! We love the dynamics and awesomeness that people with different abilities bring to life and the community around them. We wanted to ensure our family was a a big part of that community.

My hope is that one day that community becomes everyone’s community and society in general. I hope that people with Down syndrome are not overlooked for adoption. I hope they aren’t seen as the second rate children, especially since an adopted child is frequently looked at as second choice already. I hope more people consider adoption and at least change their views towards it! I hope more people get to experience the awesome and challenging journey we are on!

We did not adopt to save the world, to follow God or be seen as Saints. You don’t have to be religious to adopt, which was another assumption a lot of people made. Through this process I did experience God in a way I hadn’t before. Despite being raised a Christian, neither Jon nor I were practicing in any traditional sense at the time. We adopted because it was a desire of ours. It was how we wanted to expand our family. We wanted to experience adoption, just like some one might want to experience pregnancy.

People sometimes say that Sofie is lucky to have us, but the opposite is true. We are so blessed to be her parents and in her world. We are better people because of her. She is perfect.

*You can read more about our journey by going back in our blog if you are interested. Our Adoption Details and Sofie’s Birth Story are also linked pages on the top bar of this blog.

What’s Life Like? (Day 2)

1 Comment

Our life is a little on the crazy side most days, but at this point I don’t think we are that different from a family who has a typical 4 yr old and 18 month old. Although Sofie is 4, not 18 months. Developmentally, Sofie is probably somewhere between a one and two year old, depending on the area being observed.

My girls are difficult at times, but what preschoolers aren’t. Some people thought we were insane for adopting a child with Down Syndrome because of the different challenges we would face. There is a key word there… We will face “different” challenges. Every family has their stuff. Some parents will have to deal with their kids turning to drugs or alcohol, both things we will probably not have to deal with for Sofie. The most pronounced challenges I expect to deal with is her delayed development, which just means she will stay in certain stages longer than other kids. It has been and will be frustrating at times but what challenges aren’t?
 

Sofie is a typical toddler. She sleeps in a big girl bed, but does manage to fall off and sleep soundly on the floor. We put her to sleep in a sleep sack to keep her from getting naked and playing with her poop… we are in that stage right now, but I am assured it will end. She wakes up around 7 and takes a long time to be ready to face the day, just like her Daddy!

Sofie has her favorite breakfast food  (dry Cheerios) and enjoys the times I have energy and time to change it up. She has favorite cartoons, toys to play with, sides of the bed, ways and places to sit or cuddle. She loves helping and watching me bake or cook. She likes too look through books and spend time alone in her room. She likes going out, anywhere almost. Her favorite thing in the world is music. She dances, sings and rocks out endlessly.

She gets in to cupboards and drawers like any typical 1 year old. She only says and signs about 40-50 words but is excellent at getting her point across. She whines, cries, laughs, and gets excited.

Our days are pretty typical, I think. Crazy, tiring and hectic but normal. Sofie gets her diaper changed and help getting dressed. We eat breakfast, she has her favorite food just like Livi, although does need help feeding herself. We either stick around the house playing and cleaning, run errands, go do something fun or watch cartoons. After lunch is either quiet time or preschool, depending on the day. Then usually cartoons and playtime while I make dinner. After dinner is play time with Daddy. The girls are both usually pretty eager to jump all over him. Sounds pretty normal, right?

With Sofie there are extra things I need to keep in mind. For eating, I need to ensure there are as many calories packed in to meal as possible. She drinks whole milk mixed with whip cream with each meal. I put extra mayo or margarine on everything she eats. This is because of the malnutrition she endured in the orphanage and not typical of DS. She does have some behavioral issues that have more to do with her time spent in the orphanage too. Her Attachment Disorder is also due to the neglect she’s experienced. I actually find this the most frustrating hurdle we have to overcome. The only thing that really is related to her DS is the fact that she has more doctor and therapy appointments than the average kid. Probably a couple each month. They can get tiring but I know they are for her own good of course and will help her and me in the long run!

So, no, I don’t think our lives are that abnormal. I don’t think we were crazy for wanting a child different abilities. I think we are blessed. Actually, I know we are blessed. We have an awesome, exhausting, fabulous life that I love! We approach it differently sometimes and have some different lessons to learn but it is so amazing and worth it!