Tag: Parenting

Living With DS: Then & Now (Day 4)

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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.

The Reveal

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My mom really wanted to give us a 3D ultrasound. She is fascinated by the technology so as much as the gift was for us… if was for her 🙂 We invited my Grandma along to who was just as amazed. The 3D stuff was really neat but I was mostly excited to find of the gender.
The verdict is in….
It’s a GIRL!
I was convinced I was having a boy up until a few weeks ago when I started having a few dreams of having a girl. I have a bit of a weird connection with dreams. They, more frequently than can be explained by coincidence, come true or been true with out my knowing. Friends used tell me dreams that were bothering them and I would matter-of-factly know what they meant. As a child I even knew my grandparents had been in a terrible crash before my mom had got the call. Weird stuff. Anyway, dreaming it was a girl totally threw me from being certain I was having a boy! 
Then, the technician checked three times and told us we were having a girl! I don’t think it has quite sunk in yet. I was so convinced we were having a boy. There is still a seed of doubt in my mind that the reading was correct even. I won’t be getting rid of any of my girl clothes though! 
I’m very excited about having another girl! I always said I had just wanted girls. Being raised in a house mostly of girls I didn’t think I would know how to raise a boy. With being convince I was having a boy, I was actually very excited to have a little Mama’s boy 🙂 Plus, I really love our boys name, Cohen Timothy. I guess I’ll have to let go of that.
So, without further ado…
Introducing,
Evelyn Jane (probably)

Evelyn is just because we like the name and it is kind of a traditional older name like Olivia and Sofie.
Jane is for Jon. Jane is sometimes considered a female version of Jon. There isn’t a good female version of Timothy (Jon’s Dad’s name) and we wanted her to have a name some what after his side of the family. Livi’s middle name is the same as mine. Sofie’s middle name is a combination of our two closest grandmother’s and now Evelyn’s middle name is after Jon. It doesn’t hurt that Jane Austen is my favorite author either:) 

Livi has decided that her nick name is Eva (EE-vah). I thought it would be Evie (Eh-V-ee) but I think Eva is sticking. We’ll see how it plays out I guess. I get my house of girls! I hope they have the special sister bond that I get to have and know many other sister’s share. There is nothing like having sisters!

Preschool

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My girls are starting preschool in ten days. I’m so nervous about it. Not really sure why. Livi loved preschool for the five months that she went last year.

I think the wild card here is Sofie. I’m worried for how successful she will be. Originally, I wanted to hold Sofie back a year and start her now in 3 year old preschool… but that can’t happen with the way the funding works for an assistant. CDC covers an assistant up until the child reaches 5 years old. The school system takes over funding an aid at 5 years old. If I was to hold Sofie back and start her in 3 yr old preschool now that she is four, no one would fund an aid for her at 4 year old preschool, when she would be 5. Confusing, right?

Basically, what we decided is to go ahead and put Sofie in with her sister in to 4 year old preschool, 2.5 hours three days a week. Next year they will both go to kindergarten, in separate classes. I’ve already registered them for kindergarten even! I want them in a choice Fine Arts public school so we had to register really early. Sofie will then repeat kindergarten. I need to fight for this because the school board doesn’t want me to hold her back but the principal is on my side so I WILL GET WHAT IS BEST FOR MY GIRLS!

I’m very stuck on Sofie being held back for numerous reasons. She has had little to no early intervention in her life. All the child development books talk about how important early intervention is. I figure, Sofie is going to benefit from developing in the younger grades than the academic senior grades. Plus, special needs kids frequently get to do a grade 13 at the end of their school career. This is because CLBC doesn’t start funding support until they turn 19. I figure, Sofie is going to benefit more from an extra year in the beginning than in the end. Sofie is also, technically, ESL. I think an extra year to learn the language better and understand social cues a bit better will also be crucial at this point.

Another huge factor in this decision is the fact that I don’t want to “twin” my girls. Livi is our first child. She is developmentally older than Sofie as well. I want her to feel like the “big” girl we talk about her being. I want them to each have their own friends. I don’t want Livi to feel extra responsible for her sister. That will probably be a natural outcome with the way our family is, but I want to limit that as much as possible. I also don’t want other kids and teacher to rely on Livi to take care of her sister.

So, both girls are starting in a preschool that is known for having “high expectations” and kind of more “academic” if a preschool can be academic. I think Livi will flourish. She is so ready to start reading. I just haven’t had the energy to start that with her. I think preschool will give us the extra push we need. Sofie is ready to have more expected of her. She needs a change of environment from being just at home with me. There is only so much a mom can do sometimes. I’m excited to see how preschool helps with her vocabulary and social skills… hopefully.

September also means the beginning of gymnastics, which Livi has been talking about for months! Sofie is also going to be doing a Parent and Tot gymnastics class. I actually foresee her having a lot of fun with this. The classes are back to back so I don’t know how well the waiting period is going to be for each other. And, we are so excited to get to go back to the music class that Sofie LOVES! A new teacher but the same program which I am so happy about because it is inclusive of all ages, infants to school aged. I’m also taking a speech therapy class to be able to help Sofie communicate better. I’ve heard good things about it so I’m looking forward too it.

It’s going to be a busy fall! Before I’m ready Christmas will be here and then a new baby! I can’t wait to see how much we all grow as a family in the next few months. It’s going to be good!