Tag: Down Syndrome

3 years HOME!

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A girlfriend of mine once asked me if Sofie was what I had expected when we committed to adopting her. This got me really thinking…

What were my expectations? 
What are they now? 
How or why have they changed? 
How have I changed?

As I have said before, we went in to this adoption with our eyes wide open. As open as they could be anyway. We did not have the expectation of bringing home a typical child. We had no feelings of loss of an expected future we had hoped for her. We have high hopes for her future, especially considering what her future looked like before coming home, but they are hopes, not expectations.

We did our best to prepare by checking out resources, talking through parenting strategies for her possible needs, and informing those around us how the first few months might look. I would say we were more prepared than most.

I know of families who have gotten caught up in the excitement of adoption. It is hard not to see the innocent face of a starving child and not want to do everything in your power to help him. But there is a reality that needs to be understood when caring for an institutionalized child. I have seen parents bring these precious children home and not know how to handle the stim-rocking and flapping, the crying, the self-abuse, the drool, the stink, the food issues, the delays, the poop smears, the throw-up, the screaming, the hitting, the wild eyes and the mountains of other behaviours, not to mention the hurdles that come with any diagnosis that might accompany. That’s not even mentioning all the paperwork!

We knew what caring for a person with Down Syndrome entailed. We knew that blindly adopting a child could bring challenges that might be a surprise to us. We expected therapies, health concerns, prejudices, laughter, hugs, tears, patience, behaviours, and love. We knew it would be hard but worth it.

Honestly the only concrete expectation I had was to bring home a hurt little girl who we would love to life. Essentially, that is what we got and what happened. Three years ago Sofie arrived to us as most children from institutions do. She was twig thin. Her eyes where sunken in her head with large dark circles under them. Her skin was pale and transparent. She thirsted for stimulation but didn’t know how to play with a toy besides throw it. She had an open sore rash on her bum from not being changed for hours. She wanted food but screamed through the process of eating because it hurt her and there was a lot of trauma from the way she was force fed in the orphanage. She stank, so badly, from no dental care and her stomach eating itself. She seemed so fragile and still. Like she was stuck in a shell or seed and had to break free and come back to life.

In the orphanage, first day we met her.

One month home

I did expect more health problems. Sofie is basically completely healthy. She has no heart defects, even though we were told she did from Bulgaria. She doesn’t get chronically sick through the winter. I know some kids with DS who basically go in to quarantine in the winter months. She has had one set of tubes in her ears but they are out now and so far doesn’t need new ones! She has no cavities. If she ever does need dental work it will likely mean dental surgery but that’s not really a health issue. She needed glasses for a while but with age her eyes have gotten stronger and she doesn’t need them anymore! She is tiny for her age still, even by Down Syndrome standards, about 25th percentile for weight and 10th percentile for height. We don’t know how tall her birth parents where though, so there may be a genetic factor in her lack of growth. She was also a baby who didn’t thrive for 3.5 years, and neglected babies frequently never fully reach their height potential. We have been so blessed with Sofie’s health. It’s been amazing to see how quickly proper nutrition can help a child.

One year home
What are my expectations now? I try not to have many concrete expectations for Sofie much beyond what she is capable of doing at the moment. It is reasonable for me to expect my other two girls to learn to talk clearly, hold jobs, live independently and be financially self-sustained. These may not be reasonable expectations to put on Sofie. Only time will tell. I hope for all these things for Sofie but I’m not sure that I expect them the same way I do for my other two. We work hard with Sofie to help her to grow and meet her full potential. She will surprise and astound us with her abilities, I’m sure. I’m just not sure they will be the same abilities as her peers… Something I should keep in mind for all my girls actually! 
Two years home

I don’t think my expectations have really changed because there was so much unknown when she came home to us. I couldn’t have had expectations if I wanted to. It would have been very unrealistic of me. I have a more concrete understanding of what her needs and potential abilities are now, which have led to more realistic dreams for her, but not expectations. I have hopes and dreams for her, like I do for all my girls. Yes, hers are a little more painted in unknowns and potential adjustments but they are still there.

I hope she will be able to speak clearly enough that everyone can understand her. 
I hope she learns to read and write.
I hope she grows out of most of her behavioural issues. 
I hope she will be able independently do all her own personal care. 
I hope she has good friends. 
I hope she finds a hobby that she loves and can fully participate in with her typical peers. 
I hope she goes to her prom and dances the night away. 
I hope she gets to do some kind of post secondary education. 
I hope she can live independently. 
I hope she knows love from people other than just her family. 

She may not do or get all these things. She may get to experience them all but it may look a little different then it will look for her peers. She may learn to write but spell really poorly. She may go to her prom but need a support person to go with her. She may live independently with supports coming into her home a few times a day to assist her and check on things.

I think I’ve changed a lot in these last three years parenting Sofie. I would never have described myself as a patient person but I have been told that I am numerous times lately. I think outside of the box more. I’m so much more aware how fast paced and stimulating our world is. I live in the moment more. I don’t worry about my kids being well behaved as much as I used to and don’t get as wrapped up in the mommy competition as I used too. I feel more aware of my limitations as a person and a mother. I don’t think I am always the best thing for Sofie but I am able to ask for help better. I have given up always trying to plan everything and be in control, though I still have a lot of work to do here. Mostly, I think I appreciate the little things in life more. Sofie finds joy in such simple things that I take for granted and loves life with her whole being. It is inspiring. She is joy through her whole body.

Three years have past. Sofie was born to be part of our family. She has come such a long way. While I am excited for her to meet some of her next milestones, like being potty trained and starting to read, how far she has come is never lost of me. It’s been a wild, incredible, joyous and hard three years!

I am so blessed.
Happiest 3 Years Monkey!
August 1, 2011 – met her for the first time
August 4, 2011 – took her out of the orphanage forever! Gotchya Day!
August 14, 2011 – Arrived home in Canada to sleep in our own beds as a family!

Three years home

Sofie’s stats after 3 years home:
She is over 38 inches tall and weighs 36lbs.
She can feed herself but it’s messy and sometimes she just likes us to help her.
She loves to boss her baby sister around.
She adores her big sister.
If she had her way, she would always be in a dress or skirt.
She likes to play with baby dolls, dress up and hair accessories.
She can identify some feelings, items, book characters, and a few colours occasionally.
She can get dressed almost by herself. She just can’t fix a problem like both legs in one hole.
She clears the table after eating and helps pick up toys.
She still throws, hits and pushes way too much, but it is moving in the right direction.
She is a Daddy’s girl. They connect on a deeper level.
She can verbally say the alphabet and identify about half the letters.
She LOVES music and dancing. It is her passion.
She has probably close to 300 words that she either says, signs or understands.
She likes to go out in the car, anywhere, especially if it is just her without sisters 🙂
Most of her BM’s make it to the toilet now!
She loves the trampoline, and doing anything in water that isn’t too cold.
She is quite independent and social, but very attached to Mommy and Daddy and those in her circle.
She likes to read books and colour.
She comes up randomly to us to give us a kiss and a hug and tell us she loves us.
She loves cuddles, eating popcorn and watching movies.
She is very bossy.
She is happy, and joy, and fun!

Sofie is 6!?!

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This is so late. Birthday blogs are so important to me, to give to my girls, and this is almost a month late. Sorry future Sofie. This time of my life is so busy. I am assured it will get easier eventually!
Here is your 6th Birthday Post!!!

I can’t even wrap my mind around how she is already 6.

6 seems like a big one to me. I’m actually having a hard time with it. 6 is a big kid!

First morning picture, complete with whining.

I’m so proud of my 6 year old and amazed by what she accomplishes every day… well at least most days 😉

She is a spit fire of a kid and keeps us on our toes. She loves to laugh and keep us smiling with her often. She has such joy that just emanates out of her. She adores music and dances every single day, probably every single hour. Her favourite thing in the world right now is Frozen. She knows all the words to the movie, the soundtrack and sings it all loudly and proudly. She asks for “Elsa show” and signs for music or show every day after school. Some days it’s cuter than others 😉

Sofie’s skills and abilities are at an all time high! She is saying so many words now and tells us many stories… though I can still only pick out a few words from her long monologues. She understands most of what I say to her (receptive communication) but is still working on getting her point across with her verbal communication. She can do three word sentences now but uses two words mostly. She can put her jacket and rain boots on by herself. She is getting better at putting her shirts and pants on solo too. She knows about half of her letter and can count to 6 reliably. She also can spell her name verbally! She is also learning her colours. Purple is her favourite!

Sofie is my cuddle bug. She always wants us to sit with her or “sleep” with her. She plays with our hair and pets our face. I love how she tries to copy the way I squish my nose when I smile. She is so purposeful about it and makes sure I notice. I also love her eye lash and eskimo kisses she gives me when I cuddle with her before bed.

She loves baby dolls and the ‘idea’ of her little sister. They can be best friends and worst enemies. Sofie has actually been amazing putting up with Evelyn’s antagonizing. Sofie does her fair share of instigating too. Developmentally they are closer to each other now than Livi and Sofie are. I love seeing them together though. All three of them are truly each others best friends. Tonight Sofie was learning how to play hide and seek with Livi. She LOVED it and Evie chased behind them giggling. 

Sofie got three birthday celebrations this year.  On the day we gave her the bean bag chair from Jon and I. She loved it. On the following Friday Jon’s sister and brother in law came for a visit from the Island with Gramma, so we had cake then. She was so perfect with the cake…

“down”
“YAY!”
Then on the next Monday we had a big whole class birthday party. I was a little nervous about this. When we decided to invite the whole class I was scared either no one would come or everyone would come. Well everyone came… 19 out of 25 anyway! It worked out well. Lots of chaos but lots of joy. Sofie LOVED the attention. Elsa made an appearance. Sofie was a little afraid of her at first 🙂

We hired a friend to come and do a music class and the kids had a blast. They kept talking about how fun the music and dancing was 🙂 The party finished a little faster than I had planned. The kids whipped through all the planned activities faster than I had thought so they kind of wrecked my house for the last half hour. I’ll have to remember that for any future parties that we have! 

My sister made the cake of course. Gorgeous. 

Sofie was in heaven with all the attention. She handled the chaos amazingly and didn’t try to rock until 15 minutes before the party ended! All her classmates were so beautiful with her. They truly treated her as a peer and loved helping her open each of their presents. It was kind of amazing to watch. 
Happy Birthday my angel! You are such a light in our family and I can’t imagine any of us with out you. We love you!

Post-Christmas Blues

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Yesterday was a good day.  Last weekend and even most of this week has been actually pretty great. It was the first really good few days in over a month. It has been really rough lately. Stomach flu and cold for all of us, sleepless nights with the baby and many behaviours from Sofie especially… which didn’t make my life particularly pleasant. Even Livi had a few meltdowns this month. They don’t happen often for her but when they do, they are epic.

We expected some residual issues with the post-Christmas blues. Kids and adults, alike, generally have the ‘blahs’ afters Christmas. I feel like it hit our home, or at least me and Sofie, a little extra hard this year. Sofie had a mild form of the flu for the first two weeks back to school and Livi got it quite bad the next two weeks which ended with us taking her to the ER for dehydration. Then I got it.

I didn’t realize what was going on with Sofie at first. She is quite disconnected from her body, so she doesn’t always tell us what hurts. She wasn’t really running a fever but was having some MAJOR behavioural issues. She was throwing everything, clearing table tops, hitting, screaming, flailing and she even pulled our hair, which she hasn’t done in years! I was getting disheartening reports from school and she freaked out in her car seat and managed to get out while we were driving home one night in order to attack her sister. I ended up having to sit in the back with her. We’ve never had to do that before.

It’s been hard with Sofie this month. At least I think we have a reason for her behaviours but it didn’t make things any easier. I didn’t know how to help her through it. She regressed. We were at a loss. I’ve found that my patience with her has been shorter since then too.

I felt alone.
Parents of typical kids don’t get it.
I don’t expect them to ‘get it’, I just wish they did.

It is a lonely place sometimes. It’s hard to empathize and listen to friends complain about their kids not doing their chores or having to take all their kids to one child’s doctor appointment, while I’m waiting for the day Sofie helps get herself dressed even and I, at least once a week, cart all my kids to some kind of appointment which usually interferes with Evie’s nap time. I don’t want to compare our lives but we live in such different realities sometimes.  I do have a network of other parents with special needs kids, but we are all to busy and exhausted to actually put energy in to developing relationships! On respite weekends when Sofie is at my sister’s house I have a taste of what it would be like to just have two typical kids. It is a completely different world. I think I would be bored. I’m sure I’d be back to work full time!

I don’t mean this as any type of regret for adopting Sofie or judgement on others. We don’t have an easy life but it is nothing compared to some others. We love our chaotically boring life, most of the time… It is just my life and right now I’m entertaining bad, yucky, blah-day feelings. They come every once in a while but they seem to be staying a bit longer than usual right now. I thought maybe writing them down on the blog might help me get over them.

Sofie is truly amazing. She seems to be mostly through all the upset. She is speaking so much more. She can spell her name. She is developing her pre-writing skills. She can run, jump, and of course loves to dance! She likes school and is learning what is appropriate. We are learning how to help her better too. Livi is incredible. She only wants to spread love. She adores her sisters and helps out so much. She lives for making Evie laugh and hugs both littles every day. She is learning to read and loves school. Evie is joyous and such a climber. She is loud and starting to communicate more. Her smile lights us up and we love hearing her laugh at her big sister’s antics.

I do have friends and family who surround me with love, non-judgement, and support in whatever mood I’m entertaining at the moment. I got to visit with one of those friends on Saturday, which helped make last weekend much better. Although Sofie flushed her sons electric toothbrush down the toilet, there was no anger or expectation for me to replace it. I know that her response was genuine too, not just being polite. Friends like that are few and far between, at least in my world. I’ve never been one to have a huge circle of friends, just a small handful that I would trust all my deepest thoughts and fears with. I am so thankful for them.

Despite our household’s sleepless nights, slight depression and ailments, there was real joy this last month. Jon and I did get to go away for a night. The first time we’ve had a night with out kids in over a year! It was lovely. We had a friends wedding in Seattle and decided to stay over night. Sofie was assessed for her letters and she knows at least 10 of them and can spell her name. There has been much laughter and love between my girls who absolutely and completely love each other. Sister love is a beautiful thing. Evie’s hair is finally long enough to put in some adorable pig tails. I got a special, full shopping day with just Livi who continues to astound me with her courage, kindness and desire to help others. I am also just loving watching and listening to Livi learn to read!

This past weekend was Family Day long weekend. Although it is a new holiday and we didn’t have any big plans, we got to visit with some dear, real friends we haven’t seen in a while. Jon’s sister and brother in law where in town so we had a family dinner and a good, much needed family meeting. Livi got to have ‘respite’ at her Gramma’s house for a night. And, we got to take the big girls ice skating for the first time where they had SO MUCH FUN! Sofie was able to stand in the skates but hated them. Once we let her slide in just her shoes she loved it. Livi amazed me with her persistence and ability! She was zipping around using a bar and ventured out quite a bit without one!

I think writing this all down has helped. Not sure if I made any sense, but I’m not sure if I make sense on a day to day basis. I guess I’m okay with that. It’s my life, in all that is beautiful and broken.