Wednesday, November 7, 2012

Being Her Mom (Day 7)

It's been a long day. Not sure if that will be a good thing for this post or a bad thing...Here is the final post though celebrating DS Awareness week!

I love being a mom. It is one of the most rewarding, beautiful roles I could imagine. My kids bring me more joy than I could have hoped for. I always knew I would be a mom but I didn't think I would be so fulfilled in it alone. My children are truly gifts that shine. Being a mom is also one of the most difficult jobs I can imagine. I am exhausted most days. I can't keep up. I frequently have to choose between being a good mom or being a good house keeper. Not a fair choice in my opinion.

I think I do parent my girls slightly different while remaining consistent to our parenting style. I'm not sure if this is normal with having more than one kid or if this is just something that I'm doing with respect to their different needs and personalities. I do think each child needs something different from a parent. Thinking about the difference between my own sisters and I, we each wanted different things from my mom. I always wanted more talking while another sister wanted more physical contact like hugs. While trying to meet each of our different needs, my mom's general parenting style remained the same for all four of us.

For Sofie, I do alter my parenting a bit more than I think other parents might for a second typical child. I'm not so quick to answer the question "What's it like to be a mom to a child with Down syndrome?" as my husband is. He would say it is exactly the same as parenting a child with out Down syndrome. I don't think I fully agree, although I want to. Maybe that's because I'm with her so much more and am constantly juggling all her therapy, doctor appointments, behaviors and extra-curriculars. I also don't think Dads feel the same judgement's from other dads that Moms get from other moms. Let's face it... Moms can be judgmental bitches to each other. Parenting sometimes seems like a competition or something.

I do struggle with what other parents think sometimes. I know... not typical of me, right? I worry that they don't understand what Sofie's needs are and why it may seem like I let her get away with some things more than others. I worry about Livi thinking this too. I don't want Livi to resent her sister for "getting away" with more than she does. It is a hard line to walk.

With Sofie I have to parent her differently. She is not a typical 4 year old. It would be ludicrous to treat her like one. Developmentally she is about 1. She has behavioral issues that stem from her institutionalization, not her Down syndrome. These behaviors CAN NOT be helped with typical discipline tactics or even talked out like I was able to do with Livi from a very early age. This is my biggest struggle. I am mad at what the orphanage did to her and get frustrated with the behaviors that exhibit. I wish everyone knew that her behaviors had more to do with the abuse she endured and not because of her Down syndrome. I guess I feel defensive maybe? I want to make sure people don't judge the Down syndrome?

For the most part being her mom isn't all that different from being Livi's mom. The differences come in when I need to be more relaxed about negative behavior than I was with Livi for the sake of her attachment (not if that behavior is hurting some one though) or where I need to be much more consistent and on top of things if I want something to sink in. It does take her longer to process things. She also likes me to be holding her for quality time but not face to face. Where Livi likes to know I'm watching her and engaging with her fully.

Sofie is a pretty great kid to parent. Both my kids are. They each have their own quirks and secrets but I think I'm figuring it out. Sofie takes some extra consideration sometimes and I do have my struggles but they are just different struggles. Not more difficult, just different from the norm. Sofie having Down syndrome really isn't what makes my being her mom different. Yes, I will be in certain parenting stages longer with her but the major differences come from her being an orphan. I know we will one day get past that and she will heal fully. I feel so blessed to be her mother and get to support her through that process but some days, like today, with the tantrums, flailing, crying and snot, are hard.

Tuesday, November 6, 2012

Inclusion (Day 6)

True inclusion is an attitude, a life style. It doesn't just include people with Down syndrome or different abilities. It includes respect for all types of people, all ages, all abilities, all different points of view, all religions, all sexual orientations, all parenting styles, etc. It is a hard thing to achieve but so worth striving for.

Not sure where exactly this came from but the Principles of Inclusion are:
- that EACH person belongs
- that EACH person can learn
- that EACH person has the right to dignity

For the most part I think we do an okay job at including people in the community, at least from an integrated point of view. Sure there are the few asses we come across every once in a while with archaic views about other peoples right to practice their religion or people with special needs out in public, but I think they are few and far between. There is wheel chair access most places and you will usually come across numerous people willing to help out where needed. You will also come across many starers or avoiders when it comes to people with special needs... I usually stare right back and try to make them uncomfortable :)

The problem with people practicing true community inclusion is the lack of peer relationships between neuro-typical people and those with developmental disabilities. Sure, people with disabilities get out in the community but not usually without family or a support worker. People with developmental disabilities frequently are only friends with other people with disabilities or their staff. I would like to see more friends out in the community with people with different abilities. I hope that my girls have good relationships with all types of people and I hope I can set a good example for this.

Inclusion in schools is a tricky one sometimes. Sure there is integration but there is still the learning assistance room where a lot of kids are ostracized too. Kids who go there usually have a diagnosis of some kind and their peers know this and label them for it. Sometimes families or schools have certain expectations or a lack of expectations that don't fit with the child, the school, or the family for some reason. This is a difficult conversation to have at times.

I was an EA in a high school for a little bit and worked with one student with DS whose parents wanted him fully included in every minute of the class and didn't want much adapted for him either. I don't disagree with this strategy completely but I do think there were things the parents didn't consider. This child was years behind academically and at the high school level he was very bored during certain subjects. Because of the boredom he was disruptive. This outcome wasn't fair to the child who wanted to learn or the other students in the class.

I haven't had to tackle the school system as a parent yet, that's next year. I'm sure I will gain new perspective and ideas as I grow in to that role. I think inclusion in the school system takes open minded teachers, EA's, principals and parents who work together to come up with the best strategies for the child to succeed. All children can learn, they just may need a little extra assistance. That assistance will look different for each individual child so it is unfair to paint them all with the same brush and expect them to all succeed in a fully integrated classroom or ostracized in a learning assistance room.

The hardest point of inclusion that I have found most difficult for people to truly get is the dignity aspect of it. Dignity needs to be considered in many different areas for people with DS and different abilities. Dignity in their privacy, their rights, their choices, their successes. Frequently, their lives are decided for them to a certain extent, because of the extra support they may need they are on someone else's schedule and way of doing things. Their choices are limited because of how society views them. I have frequently been out with an individual who is taking the lead, making choices about their finances or even just their food, and the person they are talking too looks back to me for confirmation that the individuals choice was okay.

One of the biggest frustrations I have is the lack of an individuals dignity to succeed or fail. As a support worker or family member it is our job to make sure they don't fail... right? WRONG! Everyone fails! It is part of life. It is part of being human. We try things and sometimes we succeed and sometimes we fail.

I remember working for an agency as a support worker and taking an individual who was obsessed with food to the pet store in the mall. It was a spur of the moment decision for us, although I did know that we weren't supposed to take her to places where there might be food. (I didn't agree with a lot of the practices of this agency and toed the line frequently!) We had a great time at the pet store and she loved seeing the kittens. The outing was a huge success. Yes, it could have failed. She could have noticed the smell of cinnamon buns coming down the hall way and chosen to demand one, possibly even causing a scene, but she didn't. When I got back and my manager found out, I was reprimanded for the possibility of it being a failure. WTF?!

Maggy, my sister with DS, has had many successes and failures with us. Her weight is a struggle but she keeps it in check. One of her most controversial successes was getting a tattoo. A few people didn't agree with us "allowing" her to get one. We all have numerous tattoos in our family so it was no wonder that she wanted one too. We knew she may not completely understand how painful it is but figured if she ended up with only half a tattoo because she didn't want to endure the pain anymore, then so be it! She was hard core though and has been talking about another one on her shoulder! You can read all about her success HERE!

Here is another little saying that has been grilled in to me over the years that I can't remember where it is from...
The role of a support worker:
-if a task can be taught... Teach it.
-if it can't be taught... Adapt it.
-if you can't adapt it... Support it.

I actually kind of love that one.

Like I said, true inclusion is hard and takes a certain frame of mind. I just hope that as my daughters grow up they will be able to lead by example and experience this in a powerful way. I'm sure I have a lot to learn myself. I'm excited to see what they teach me and how they, along with their friends, will help to change the current attitudes in our society. 

Monday, November 5, 2012

A Father's Perspective on DS (Day 5)

I promised Katie that I would write one blog entry for Down Syndrome Awareness week, so here it goes.

My journey towards living and working with people with developmental disabilities started after high school. Looking back now at that fact is a little strange. After all, I was a part of the inclusive generation. I can remember kids in my classes who had disabilities all through school, but for some reason it never clicked with me. De-segregation had happened, and kids with disabilities were a part of the classroom and not simply observed through the glass of the Learning Assistance room. I was never really friends with anyone with a disability in school, but I don't remember shunning them or doing my best to avoid them. They were simply there alongside the rest of us - albeit usually with an aide or other adult with them. Of course, simply recognizing the existence of people who deal with disabilities is not a form of inclusion in itself. At best, it was a cold sort of recognition of the larger societal context. People with disabilities were there, but they had no impact on my life.

There was one exception to that rule, and that was Brent. Brent was a tiny little kid with Down Syndrome, who had been adopted by a family in our church. Brent was a chatty little guy, who would jabber at you non-stop with such speed and ferocity that it took a pretty keen ear to recognize what he was trying to tell you. He would run around after the service, arms and legs flailing like he was about to fall over at any second - but he rarely did. His chest was covered in scars from repeated surgeries to correct his heart, beginning when he was only days old. But his smile usually stretched from ear to ear, and his happiness was infectious. For reasons that I won't go into here, I tended to keep my school life and my church life very separate, and so my appreciation for my little buddy Brent didn't bleed over into any sort of generalized awareness of disabilities.

It was after high school that Brent's dad, John, asked if I wanted to come and help at a camp for adults with disabilities. I had been laid off from my job at the local bookstore, and was looking to keep myself busy with something, so I said yes. I remember regretting my answer almost immediately, and trying to think of a way to back out without coming across as an ass. I hoped that some kind of opportunity would come my way that would be impossible to refuse, so I could avoid an experience which I was sure would be a disaster. Obviously, that opportunity never came. I went off to a week of training camp and did a crash course in caring for people with disabilities. John had alluded to the kinds of things I would have to face, but that first week made me even more nervous than I was. The thought of doing personal care for another person was revolting. The idea that I would be presented with every part of the spectrum of developmental disability was nerve-wracking.

The first week was a disaster. I was in an integrated camp, where there were two campers with (diagnosed) disabilities, and the rest were inner-city kids. I was responsible for one kid, Nathan, who had a diagnoses of Autism and ADHD. The rest of the counselors and volunteers trundled off to different camps, and I was largely on my own. It was hell. Nathan was physically aggressive towards both me and the other campers. He tried to break windows and doors, he almost broke my glasses, and I couldn't figure out any rhyme or reason to it. I had very little understanding of how to deal with complex behaviour - I was just a kid trying to do his best. I could see very clearly that even Nathan didn't understand what was happening to him in those moments.

Nathan was sent home halfway through the week. I seriously thought about going home myself. But for some reason I didn't.

The rest of the summer was a marathon. We were short staffed almost every week, which meant that I had very little down time (which as anyone who knows me will attest to how important it is for me to find time by myself). I was introduced to wheelchairs and mobility aids, g-tubes, more behavioural challenges, augmentative communication systems, and people with all sorts of varied complexities. I learned to change a diaper on a sixteen year old teenager (which, incidentally is far more difficult task than changing an infant). I had sleepless nights. I cried. I cursed. I worked 18, sometimes 20 hour days trying desperately to meet the needs of a different set of people each week.

And I changed.

I began to realize that the people I so self-righteously thought I was helping really had the world figured pretty well. They knew the importance of friendship, the joy of helping out, the reward of working (we were never short of volunteers to help in any way, including mopping the dinner hall after meals). The people I was there to support were far more in touch with their humanity than I was. I remember watching two ladies stage a feud that had most of the camp worked up into a frenzy, and then release all that tension in a moment of tears when they apologized to each other in the dinner hall, and embraced as friends once again. I saw every human emotion present in those adults, from anger to love, from anxiety to hope, from fear to trust.

That fact should not be as surprising as most of us find it to be. Because when you get down past the prejudice and the sneering intellectualism of our society, the truth is that regardless of IQ score people with disabilities are still people. They have the ability and the right to experience everything that the rest of us experience (and everything that we take for granted). They can work, they can love, they can fight, and do everything else that we expect of those of us who appear to be neurotypical.Whether despite their disability or because of it, there is a resiliency that demands our respect and admiration.

I wrote this post as an explanation to a question. The question was, "What is it like to be the father of a girl with Down Syndrome?" My answer was immediate and instinctive.

"The same as it is to be a father to a girl without it."

Sofie has challenges  - but the vast majority of her challenges do not exist simply because she has Down Syndrome. Her challenges are related to coming out of an orphanage, missing those key years of development that all children experience. And in some ways, her challenges are no more and no less than than Livi's, whose emotions and obsession with detail often get the better of her. Sofie's challenges may not be any more substantial than those my parents had to deal with, in an arrogant and often angry son, who believed that he was too smart for school and nearly wound up paying the price for it.

My interactions with Sofie are not really any different than my interactions with Livi. We play, we sing, we deal with the tantrums and over-attachment. But when I look at Sofie, I don't see a life of challenges - I see a life of opportunities, opportunities that she would not have had in Bulgaria because they believed that her disability was really an inability. I see a life where she has the same opportunities afforded to any of the rest of us.

Because we're all human. And we all deserve to be treated like one.

Sunday, November 4, 2012

Living With DS: Then & Now (Day 4)

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.

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.

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...


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.

Saturday, November 3, 2012

Adoption & Choosing Down Syndrome (Day 3)

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.

Friday, November 2, 2012

What's Life Like? (Day 2)

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!

Thursday, November 1, 2012

What is Down Syndrome? (Day 1)

The States have a whole month devoted to Down syndrome Awareness and I know a lot of Canadians celebrate that month too for DS. There can't be too much celebrating and awareness for our angels! But in Canada October is Autism Awareness month, another different ability that affects many of our kids with DS and something that is dear to my heart since I work with a little girl on the spectrum. In Canada, the Canadian Down Syndrome Society has set aside November 1-7 as DS Awareness week. Since, I'm Canadian and didn't want to take anything away from Autism Awareness month I am celebrating DS now in November. I've decided to do a blog post each day (or at least try!) to tell you a little more about our lives and create some more awareness! I think I even convinced Jon to write a post on his journey and life as Sofie's Dad. I talk to so many mom's and read so many Mommy bloggers but don't always get a Dad's perspective. Stay tuned...

My first post is going to just touch on what Down syndrome actually is or isn't. I'm not actually sure I've posted on this before! It is such a norm in my world that I rarely think of the label any more. I forget that others might not understand fully.

The only consistent thing people with Down Syndrome all share is the presence of extra genetic material around the 21st chromosome. Even around that 21st chromosome there can be three different patterns it can fall in to. 95% of people with DS have the Trisomy 21 pattern where there is an extra chromosome in every cell. About 3% have the Translocation pattern where part of the 21st chromosome breaks off and attaches to another chromosome. About 2% have the Mosaic pattern where there is impaired cell division so some cells have 46 chromosomes and others have 47.

Most babies with DS are born to mother's under 35 and is usually completely random with no family history of DS. I've also heard that DS is the most common chromosomal difference affecting about 1 in 800 births. Not sure if that is true but I thought that was interesting!

Giving you a list of characteristics common in people with DS is no different than giving you a list of characteristics of people in general. They have two eyes, ears, arms and legs. They have a heart, a brain, a smile, a laugh, and a cry. They can be happy, sad, frustrated, selfish, loving, mean, and every other emotion that people have. Just like any other person. People with DS are more alike to 46 chromosome people than not.

Other characteristics vary greatly. Yes, there are things that are associated with having DS or show up more often in people with DS than in 'typical' people, like low muscle tone, almond shaped eyes, and a smaller body frame. There are also health concerns that seem to be more frequent in people with DS, like heart complications, hyperthyroidism, Celiac, hearing or vision concerns, and cognitive or developmental delays (which aren't really health concerns but I don't know what category to mention that in). A person with DS may have many or none of these characteristics or health issues. Like I mentioned before, the only thing they all share is the extra genetic material on the the 21st chromosome.

There is nothing wrong with people with DS. They are not medically fragile, diseased or contagious. DS is something that causes delays but that's all, JUST delays. It doesn't mean that the person with DS will not be able to accomplish something. It just means it might take them a little longer to accomplish them. They can do ANYTHING any other person can do or dream of. They can and have scaled mountains, been business owners, traveled, sky dived, owned a home, married, parented, worked, gone to college, got their drivers license, and anything else you or they can think of.

People in general are pretty amazing. People with DS are just as amazing. They are individuals with their own strengths and weaknesses, hopes and dreams, desires and struggles. They have more abilities than disabilities. Look at the ABILITY.