Tag: Adoption

What is Down Syndrome? (Day 1)

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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.

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!

One Year Home!

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I know I’m late with this post! Sorry! I’m sure that some how makes me a bad mother and a horrible person… Oh well, I’ve been accused of worse. It has been a truly busy month and even crazier two weeks.

Any ways…
August 14 was Sofie’s one year home anniversary! We got home late that night one year ago, so I kind of count the morning we woke up as a family and crawled in to bed together for snuggles as our real day to celebrate! Really the whole first two weeks of August are a celebration of thankfulness with Sofie.
August 1 is the day we met Sofie for the first time! August 4th is Gotchya Day when we took Sofie out of the orphanage forever! August 14 is when we got home to Canada and our beds! August 15th is when we woke up for our first family snuggles. It was such an incredible, humbling, stressful, thankful two weeks. And now looking back at the past year is so much has happened this year! I can’t even imagine where our family would be if we had not adopted Sofie when we did.
I tried to think of some profound post to commemorate today but I can’t. I think Sofie is profound enough. Adoption is amazing. Seriously. Before I go in to all the updates on Sofie I do want to encourage any and all of you readers to seriously consider adoption. There are so many innocent children in every country that need a family. Why not yours? Truly. Why not? Money, birth children, hardships, etc…, just aren’t good enough reasons not to adopt to me anymore. I’ve looked in to the eyes of children who are waiting. They wanted to be held and played with. They were broken. Children under 3, broken. Ignored. Dying. Forgotten. Can you imagine?
I don’t think that I usually get on my soap box about adoption but it really is something that is very close to my heart. There is no reason to have a handful of birth children anymore. The world is overpopulated. There is birth control options. There are over a million orphans waiting, available, needing families. And don’t even get me started on the idea that it is more important and special to have a birth child “of your own”… That is crap and a damaging view to hold. 
Back to my own amazing daughter!
She is flourishing! She is a different kid from a year ago. She is alive now! We literally got to see Sofie break out of her shell. I didn’t really know what that statement really meant until I got to walk along with Sofie as she broke free.
One year ago Sofie was a shadow. She cried and complained so quietly. She rocked (self-stimulated) ALL THE TIME! She woke up crying numerous times a week and was inconsolable. Truly inconsolable and writhing. She barely drank. Her eyes had dark circles under them. Her hair was life less and mousy. She had a bald spot on the back of head from rocking. She was 19 lbs and just under 32 inches tall. She was skin and bones. She had a terrible rash on her bum that was raw and open.
When she got home she pulled hair. It hurt and even made me cry. She hit. She threw everything and held nothing. She didn’t know how to play… at all. She just didn’t explore her surroundings but just sat and watched. She couldn’t handle new experiences like grass and large groups.
Now? Wow. She jumps in to new surroundings, unless there are tons of people, then she stays close to Mommy or Daddy, which is awesome by the way! She is fully attached to us, but still fearless. She doesn’t pull hair anymore although I am still watching for it. She still hits a lot but it is more behavioural than instinctive. She still throws a lot but not as much. She holds things now, examines them and plays with things! She has even lined her toys up in a row… which is huge! She doesn’t really play with other kids but she will play beside them and parallel play, which if I remember right is pretty on par for the 18 month developmental level I think she is at. She still doesn’t love grass and large groups but doesn’t let that stop her from exploring and doing what she wants.
She cries now, loudly, and makes her frustration known… to everyone! She rocks rarely, only when she has had an extremely overstimulating day, like spending all day at the PNE, and even then only for a few seconds. It used to be hours at a time. No more dark circles, unless she ids really tired. Her hair is full, shiny and perfect! She has chubby cheeks and squishy thighs. She is still hanging around 27 lbs but she did grow! She is 34 inches now!!!! 
Sofie has many new accomplishments too. She now sings along with songs regularly. She does somersaults. She tells me she loves me, even unprompted! She can close doors from the outside now and is getting dangerously close to opening them. I am not looking forward to when she masters this! She has begun throwing temper tantrums which may not be a desirable accomplishment but it is a developmental one that is very noteworthy. She is SO close to jumping. Sofie babbles and talks so much now too. I’m sure she thinks she is talking English to us and sometimes I’m sure she actually is… I just can’t always understand it. She still uses some signs but words are definitely replacing them rapidly.
Things Sofie Likes:
Music!Particularly fast and loud!
So You Think You Can Dance and her play list on YouTube. Sofie will sit and watch these over and over if I let her.
Dancing. This kid is so touched by music.
Wiping things. She likes to wipe her mouth while she eats and is great at cleaning my shower doors and bath tub!
Water!Sofie is a water baby. She dunks herself and plays under water with out a second thought. Splashing is one of her favourite pastimes too.
Cuddles. She loves to sit with Mommy on the arm of the couch or with Daddy in bed under the covers and just cuddle. 
Being able to keep up with her sister. This does frequently lead to frustration if she can’t keep up with Livi but when she can she is in heaven.
Things Sofie Hates:
Not getting her way. She is very controlling and demands things the way she likes. We are working on this.
Fruit. She doesn’t like the wet texture of fresh fruit. I have to cook them or hide them well. 
Bedtime. She isn’t terribly difficult to get to put to bed she just fights us the whole way.
Below is a comparison of “then and now” pictures almost exactly one year apart. I am so amazed how much healthier and alive she looks….

Sofie – You are incredible. You have already impacted so many peoples lives and are going to continue to amaze everyone. You have crashed down walls and broken stereotypes just by being you. Never stop being you! We are so thankful to be your parents. You inspire us. You are beautiful. You are perfect and we love you. 

A year in pictures 🙂