Talking To Your Child About Down Syndrome

Recently, a few friends have asked me how they should explain Down syndrome to their child. This is only my opinion, it may not work for everybody and not everybody will agree. I am very open to discussion and love when others come up and talk to us about Adele.

When I explain Down syndrome to younger children, I try to keep it fairly simple.

Down syndrome is not a disease. You can not catch it. It is a chromosomal condition.

We have 46 chromosomes...they make up who we are as people. Mommy and daddy both 'give' us chromosomes, we get 23 from mom and 23 from dad. These chromosomes decide how we develop and grow, how we act, if we will look like mom or dad. When talking to your child about Down syndrome, some won't understand your explanation on chromosomes and that is ok, it's not the most important part about Down syndrome. :)

Adele has 47 chromosomes. This one extra chromosome gives her some extra special gifts.
Her eyes are almond shaped, her nose bridge is flatter, her ears are smaller and lower-set, her mouth is shaped differently, her tongue is a bit bigger, she has a smaller mouth and her palette is shaped differently, this affects her speech. It might be harder to understand her not because she doesn't know how to talk but because she lacks some muscle strength and the inside of her mouth is shaped differently. She will do all of the same things that you do, but it's going to take her a little longer....sitting up, crawling and walking. Because of her extra chromosome, she is a bit floppy, like a rag doll, so crawling and standing are a little more difficult, but she'll get there. She needs to work on getting stronger, we do this with the help of some really great people. Adele does some special exercises that help with her strength and her speech. When you go skiing, or play really hard or have a big long game of hockey or soccer, sometimes your muscles feel a bit weak and you feel kind of floppy, this is how it is for Adele, every day. She just needs some time.
She will love the same music as you and will like sports and gymnastics, just like you.
She has feelings, just like you and she will love playing with her friends and laughing at silly jokes. Having the extra chromosome, doesn't make her any less of a person, she's just like you, she just has to work a little bit harder at some things. Some school subjects might be a bit more difficult for her to catch on to and some will be a little easier. Maybe math will be harder for her to understand because the numbers might be confusing, but she may write really great stories in Language Arts class.

It's ok to look, I do too and it's ok to ask questions. I like it when you come up to me and ask questions about Adele. It's important to ask when you don't understand something, we do this in school all of the time. When you are confused or you need more clarification, you ask your teacher for help. This is how I feel when it comes to Adele, just ask me. I will answer your questions and hopefully help you to understand why Adele has some extra special gifts and how they affect her day to day life. Always remember that different is beautiful. We were all made to not look like each other. We are all unique. If we all looked identical or if we all liked the same subjects and played the same sports, life would be boring. 
Children and adults with Down syndrome are just like you and me. We are all beautiful, we all have our own gifts, talents, weaknesses and strengths.

Be kind to each other. Be a good friend. Include others.

*** If you are in the Calgary area, this is going to be an awesome event! I'll be there! :)

IMcommunity Event - Adele's Over the Rainbow Baskets

 

 

I made this brochure last year for World Down Syndrome Day. I'm sorry that it cuts into the side bar if you are viewing on your laptop. I needed to make it big enough. :)

 



Our Mighty Challenge.....

THE MIGHTY CHALLENGE

I want to invite you to participate in our February challenge. We’re asking our readers and bloggers to do the following: Write a note to a stranger, or someone you don’t know well, who showed you incredible love.

I thought long and hard about who I would choose. This was difficult because we have met so many incredible people along this journey. I chose to write my letter to Karmen, we know each other but not very well, but what I do know, is that I love her. Our world changed that day. The most important thing when a family receives a pre-natal diagnosis is that they get connected with a family who is on the same journey. Get support. Get educated.

Dear Karmen,

We had just received our pre-natal diagnosis. We were letting emotion take over logic. We were in a place of uncertainty and fear and worry. You reached out to us, invited us over to your home and you were kind enough to share the journey that you have been on with Carson. We walked in and you gave us a hug; you made us laugh and introduced us to your husband and your sweet little peanuts, McKenna and Carson.
Carson was in the middle of a therapy session and I remember thinking, he needs occupational therapy? He needs physical therapy? He needs speech therapy? I could feel myself getting overwhelmed. At the time, all we knew was that children with Down syndrome had developmental delays. We didn't know about hypotonia. We didn't know about the vision, hearing and pulmonary appointments. We were lacking knowledge and awareness.

We went upstairs and I soon came to realize that you and I are were really alike and that Joel and James had similar personalities. We are the lack-of-filter wives, who tell it like it is and our husbands are a bit more calm and relaxed and use their filters when needed. It was a match made in heaven. :)
You were honest and real with us. You were calm and relaxed and non-judgemental. You gave us a picture of love and reassurance not one filled with grim statistics and upset. You told us that you would support us along our journey and that you would guide us to a place of comfort and love. You talked about Carson's appointments and that the journey with your son has been filled with joy, mixed with some bumps in the road. You were honest and we appreciated it.
Our time at your house was filled with mixed emotions. We felt confident and then scared and wondered if we could be amazing parents to this little being growing inside of me. We felt uneducated and fearful if something went wrong during our pregnancy. We felt happiness that Brinley would have a sibling but would they love each other? Would they be close? You answered all of our questions. You told us your reality. You told us that the journey is beautiful and rewarding. You knew that our baby would be loved and that she would change the world.
As we sat on your couch, our worries began to dissipate. We felt support from a family who barely knew us. We felt like we had connected with a family who would hold our hand when we needed it. We felt the sadness start to lift. We felt the need to continue to educate ourselves and to make sure that we did everything possible to keep our baby healthy.

Before we left, you gave us a video called Deedah. We didn't watch it right away. We needed to process and think about the journey ahead. When we finally sat down, we watched it together. We smiled, we laughed, we cried. We closed that door of uncertainty and opened the door that was filled with hope and love and celebration.

Thank you for giving us your time that day. Thank you for not judging us and for accepting our fears and worries. Thank you for letting us know that there is support. Thank you for hugging us. Thank you for being the voice of reason that we needed. Thank you for allowing us to express our concerns. Thank you for letting us walk out of your house that day feeling that we were not alone.

Love,
Krista

Dinner For Four

 

Well, it’s dinner party night at the Collins’ house. I am ready to host my husband and two children. That’s the extent of the dinner parties at this abode. It starts off with the planning stage.

 What to eat?

Let’s go with fancy tonight, spaghetti and meatballs. I know that I am setting myself up for stains. There will be stains on faces, couches, clothes, on the carpet and on Adele’s high chair. I know that I will cringe when I see the meatball hit the ground and I will point a finger at James when his children destroy my kitchen and living room with tomato sauce and oversized meatballs.

The bibs go on. Bibs usually get ripped off immediately. This mom knows that a spaghetti bath is imminent. The girls look at each other, it’s like they are joining forces, coming up with a plan to cover the entire main floor in spaghetti.

Adele is now at the stage where we allow her to try to feed herself. As parents, we need to take a step back and allow her to figure out how to get the food from her plate, into her mouth. This mom would love to place her children in full bodysuits at every meal, but it’s not practical. Meal times are a mess.

The spaghetti food fight begins. Adele loses seven out of the eight pieces of spaghetti; they end up down her shirt. It WAS a nice, clean and beautiful pale pink shirt, now I’m wondering how to remove the red tomato sauce stains, instead of enjoying my meal.

Brinley is becoming more independent and likes to use a spoon. It usually goes a little like this:

 Grab spoon.

Manhandle food.

Place food on spoon.

Food falls on couch.

Food falls on shirt.

Food falls on pants.

Food falls on carpet.

Repeat.

 

We have learned that we need to go with it. We need to relax. We need to let these girls figure out how to feed themselves without mommy and daddy making gasping noises when a meatball hits the ground, or a string of spaghetti gets flung across the room. We are learning that meal time needs to be a relaxed and enjoyable experience, with laughter and conversation.

I have thrown out clothes because the stains were permanent and some have turned into rags, which James now uses in the garage. I have used bleach and stain removers which are considered top name brand products. Products that are guaranteed to remove stains. They didn’t work.
So, this momma did some research.

I found one! I found the product that removes stains and whose reputation surpasses all others. OxiClean Versatile Stain Remover. http://www.oxiclean.ca/Products/oxiclean%C2%AE-versatile-stain-remover-powder/ This stuff is a miracle worker. It removes everything. If you are a mom or a dad and you have children or throw dinner parties, this should be your centerpiece. I’m not kidding. The original oxygen-based stain remover has over 101 uses on multiple surfaces like carpet, upholstery, kitchen and bath surfaces, and even works outdoors on gutters, unfinished decks and patio furniture.

 

 

I no longer throw out clothes. I no longer stress about stains on clothes or carpet and when the family eats spaghetti, I’m not worried. We are a stain free household, thanks to OxiClean!

BEFORE

 

 

 

AFTER

 

 

OxiClean is available across Canada at Shoppers Drug Mart and Walmart. Check out their Facebook Page for more tips and tricks.

This post was brought to you by OxiClean Versatile Stain remover, however the images and opinions are my own. For more information please visit http://oxiclean.ca/.

 

 

 

A Day In The Life Of A Mom And A Special Moment

A day in the life of a mom......well, just a small part of the day....like a few hours. :)

We were up at 7:30am, which really is a decent time. Brinley always crawls into bed with me, we snuggle and we wait for Adele to start tooting and calling for dada. I get out of bed, kiss Brinley, hand her the IPad, rub Adele's head, tell her that I love her and get in the shower.
Once I'm out, I give Adele a book and Brinley is usually singing the alphabet song and I keep getting ready. We have a routine and we stick to it.
Once I'm looking presentable, I get the girls dressed and ready for the day. We eat, we laugh, we hang out. It's our routine.

Today, we decided to go to Target and were hoping for some awesome deals. We got daddy to meet us there so he could help with crowd control. I was picking up some socks for World Down Syndrome Day. Last year, I went into the local elementary school to do a bunch of presentations on Down syndrome. I have a question and answer period at the end and hand out funky socks. The whole point is to teach children that we are all different, we are all unique and we all have our own strengths. The students are so responsive and respectful towards Adele. I love the innocence.

The Target visit went a little something like this.....
"Brinley, stop rolling around on the dirty floor."
"Brinley, where did you go?"
"Brinley, put that down."
"Brinley, I'm losing my patience."
"Brinley, do you have to pee?"
"Brinley, I'm going to leave you here, in Target and mommy is going to go for coffee somewhere, with your well behaved sister."
"Brinley...Brinley...Brinley....Brinley...."

Brinley now has pink cheeks from running through the entire sock section and from rolling around, kind of like how a sniper would manoeuver through the bushes, she was doing this around the racks. Although she had some stealthy moves, wrong place, wrong time."

I decide that I will ignore the situation. Pretend that I do not know this child.

We get to the till with around fifty pairs of funky socks. Brinley starts grabbing them, tossing them, yelling at her father, I am still pretending that I have no idea who this child is or who she belongs to. Not my problem.
James picks her up, she goes all limp, then stiffens her body and yells and kicks. James uses his quiet whispering tactics. I think he threatened her with no dinner or something.
We are at the self serve checkout, I am rhythmically scanning all of the socks, singing happy songs in my head. One pair won't scan. I want these socks. Brinley is yelling.
JUST SCAN! JUST SCAN!! After fifty attempts, it works.
"Brinley, put your coat on."
"NOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOO."
It's not like it's really super cold out. She will survive. I'm sure other moms do this all of the time. Whatever.

By this point, James is excited to be heading back to work.

We get the girls in the car, I yell over Adele and give Brinley the mom eye and all is quiet.

Three hours before this, I drank my Isagenix shake. Three hours after the shake, I was  craving rum or McDonald's. I haven't had McDonald's in almost a year. I knew that I couldn't get hammered, so we called auntie and she met us at Wal-Mart.
Target, and now Wal Mart. I feel classy today.

We meet auntie and we head up to the till. I start feeling guilty. I feel my butt expanding and my tights getting tighter. I reconsider eating fried food. I am staring up at the menu board and think about a salad. I think about a smoothie. I think about how I will feel within fifteen minutes after eating McDonald's.

I push those thoughts out of my head and order Brinley a meal, momma a meal and auntie settled on poutine. We are going to sit down, eat a 'nice' meal together and not feel guilty.

We get settled and auntie's phone rings. It's the groomer. She was on her way to the vet because she cut off almost the entire bottom half of Bacchus' ear.

Auntie leaves so that she can meet the groomer at the vet. Mommy feeds the children.

I remember that Brinley hasn't gone to the bathroom in a couple of hours. I dread going into the Wal-Mart bathroom. I sit and wonder if I can avoid it. Does it really matter if she pees on the car seat? Yes, it matters.
I clean off our table and make our way to the bathroom. I tell Brinley that if she touches anything, she will never get a potty treat again. I whip out the potty seat, Brinley sits down and pees. We are good.
When I flush the toilet, Adele gets scared and starts crying. The cries are echoing and bouncing off the walls in the bathroom.
We exit and hand sanitize Brinley.....all the way up to her elbows.

She starts grabbing her pants, between her legs and tells me that she needs to go potty again. Are you kidding me?
We go back in, get out the potty seat, pull her pants down and she's wet.
A good mother would have taken off her panties and pants and put her in a new set. I am not that good mother. I put her back on the potty, she doesn't need to go.
I pull her pants back up and have enough common sense to not flush the toilet.

We go back out and sanitize again, all the way up to the elbows. 

I think when I get home, I should have a rum n coke.

I see an older lady staring at Adele. Not a happy stare. No smile, just staring.
In my head..."oh forget that lady, you are so not going to ruin my day. I dealt with somebody like you the other day and I just managed to pick myself back up. You will not stare at my daughter, you will not treat her like she is anything less than a perfect, little miracle."

Yes, all of this was  going on in my head.

After our incident on Monday, I didn't want to go anywhere on Tuesday. I didn't want to face anymore stares. I didn't want to face anymore ignorant people. I didn't want to have to deal with those who chose to walk up that morning and be an ass. It was a difficult day because I have never experienced these feelings before. I didn't want to take my child out in public. It was a sad day.

As I looked back at this woman, I thought, it's ok, you don't know us. You don't know my child. You don't know what you are missing. You don't know our story, our journey.

We headed out to the car and a man walked passed me, he was smiling, he was handsome, he had kind eyes. I was looking at him. I was smiling. He has Down syndrome.
His smile was so sincere and genuine. His presence was beautiful. He brought this sense of peace to me at that very moment. I needed to feel this. It was like he was looking at me and reassuring me that it will all be ok. It will all be ok.

Adele's Over the Rainbow Baskets - Down syndrome LOVIN

Not A Good Day....

Today started off pretty great, then it went downhill.

I decided to take the girls into the city to meet James for breakfast at Tim Horton's. We've never done this before and our only others plans today are for the girls to get their hair cut.

We arrived at Tim Horton's and found a table for the four of us. There was another couple sitting not too far away, a husband and wife. She kept staring at Adele, and not one of those smiley, friendly stares, but a blank stare. Kind of like a deer caught in the headlights.
I mentioned it to James and he said that she probably has seen Adele's face plastered all over the place and she recognizes her from Facebook or the news.

He was trying to make me feel better.

I went up to the till, Brinley was with me. The lady got our order ready and looked at Brinley and told her just how cute she was and that she loved her outfit. She then pointed over to Adele and said "that one there is cute too."
She said it like it was forced, she needed to say something because she knew that both girls were with me. I felt a bit hurt.

We sat down with our food. Another lady, on her own, sat next to us and was commenting on how adorable Brinley was and that she was a busy little girl. We acknowledged and laughed a bit. By this point, I didn't want to talk to anybody else.
She looked at Adele and said "so sad." Yes, this is what she said. Before I could react, she caught herself and said that she thought Adele was cute. It wasn't sincere, it wasn't genuine.
She then asked me how old the girls were and I told her their ages. Why I was still engaging in conversation with this lady, I don't know.
There was a little gasp when I told her Adele's age. Yup, my little girl with Down syndrome is almost 18 months, she's not crawling, she doesn't walk and she's still in a car seat because we think it's the safest option for her at this point in time. Go f@#k yourself!

I looked at James and he knew that it was time to go.
The lady, who already has done enough damage, then proceeds to tell me that I must have my hands really full with two young children. I nod. She tells me that Brinley will be a lot of work but having Adele will be so much more work, lots of effort and extra time put into her.

I looked at her, I wanted to cry, punch her, kick her in the kneecaps, but instead, I told her that we love our daughter and that she is one pretty awesome kid. I couldn't get anything else out. I was stumped. This has never happened to us before. This shit shouldn't happen to us and to other families who have a child of varying abilities. Where have parents gone wrong in raising their children? What happened to teaching your children about respect, inclusion, acceptance and differences? When you teach your children all of this, they grow up to be kind, respectable adults.

James helped me get the kids back into the car. Before we left, I decided to buy some donuts for the NICU and drop them off. The NICU was a place of comfort for us and Adele was loved and appreciated. I needed to feel some peace and comfort.

I pulled away and I cried. This was the first time that I've heard some of these words, words that were directed towards Adele. I was so hurt. My heart ached for Adele. My tears continued to flow as I thought about the future and when she will understand what people are saying about her. I cried for the times when Brinley will have to defend her sister. At this moment, in my car, I mourned the loss of the 'perfect typical' child. I felt sorry for my baby girl. I felt sorry for those who don't get it. I felt sorry for the ignorant people in the world.

Some people may think that I am exposing my child too much through social media or fighting for changing the face of beauty, I am doing this all for a purpose. I am trying to educate the world. I am trying to pave a smooth road for both of my children. I am on a mission, but today I felt like I failed. This is not a woe is me speech, it was just a hard day. I know that we have so much love and support that surrounds us and we are grateful and thankful. Tomorrow is a new day.

 

 

Adele's Over the Rainbow Baskets - Down syndrome LOVIN

50 Things That My Child With Down Syndrome Will Do

I've been thinking about yesterday's post. I felt that I needed to write part two.

What Adele and her friends WILL do. :)

1) Change the world
2) Impact lives
3) Smile
4) Love deeply
5) Join Special Olympics
6) Make friends
7) Go to school in a mainstream classroom
8) Volunteer
9) Get a job
10) Make others laugh
11) Teach the world about kindness, love and respect
12) Travel
13) Dance
14) Make the world a better place
15) Go to college
16) Date
17) Get in trouble
18) Tell jokes
19) Make us proud
20) Learn skills to live on their own
21) Talk back to their parents
22) Learn to drive a car
23) Experience ups and downs
24) Teach us to slow down
25) Show us true beauty

26) Enjoy life
27) Create peace
28) Teach us about honesty and respect
29) Hug with meaning
30) Teach us that giving is better than receiving
31) How to care for others
32) How to listen without judgement
33) Hard work always pays off
34) Just relax
35) Don't set limits
36) Anything is possible
37) Be genuine
38) Say what you mean and mean what you say
39) It can be done
40) Will encourage you to find your own strengths and talents
41) Will teach you about not judging others
42) Teach us to love with all of your heart
43) Don't doubt their abilities and capabilities
44) Life is pretty good
45) Value your family and friends
46) Teach us to be patient
47) Show others that life should be valued and lived to the fullest
48) Teach us to sit, look around, listen, talk, be a good friend to others
49) Play sports, join clubs, win awards, gossip with friends
50) Our beautiful children will enrich our lives and those around us

The world is filled with judgement, stereotypes and ignorance. Our beautiful children will encourage us to be kind to others, to love with all of our hearts and let others know that different really is beautiful. We all have our own strengths and talents, we are all unique. We are all on our own journeys.

She'll Get There

Last week was a crappy Down syndrome week for me. I had a lot of moments where I was hoping that I would wake up and some of this journey was only a dream.

I don't like to compare my children to others, but I do like to know when other children hit certain milestones, just to use as a guideline. Adele is 17.5 months and is not crawling, she is not walking and she doesn't pull herself up on couches or toys. Some days it's discouraging.
Adele rolls all over the place and it's actually quite entertaining to watch. She will manoeuver herself around like a champ and it makes us laugh. When I see this, I feel that Adele knows exactly what she is doing and that she can get from A to B with no hesitation and she does it with ease.
Although I smile and chuckle when she does this, I can't help but feel a bit of upset and discouraged too. When we were pregnant with Adele, we stayed off of Google. We weren't interested in grim statistics or unhappy stories. We focused on the pregnancy and knew that she was healthy from the ultrasounds. When we thought about Down syndrome, we only thought about the delays, nothing more. Part of me wishes that I did some research on therapy and how Down syndrome affects her muscles and strength. Would it have changed anything? Probably not, but maybe I would have felt more prepared today.

We are surrounded by an amazing support system and we are eternally grateful and thankful. I have never felt sorry for myself, if anything, I am so proud to show Adele off and when I look at her perfect little self, my heart melts. It's just that I have moments. I had moments last week when I thought about the delays. She's not crawling, is this because her delay is more moderate or is it because she is so incredibly floppy? Does she not realize that she can get in four point and crawl to go play with her sister? What is related to the delay and what is related to hypotonia? I have fully accepted Down syndrome. I have not fully accepted what comes along with Down syndrome. Last week I wondered if she will get married, would she have a child? Would I want her to have a child? Yes, I think that far into the future. In a previous post, I said that I would work on taking things day by day and that I would savour all of these beautiful baby moments. I am human. I have failed. I worry.

I have heard many times over the past 17 months that Adele will get there in her own time. She will do it and just to relax. I know that this sounds a bit harsh, but I sometimes want to punch people in the face when they say this to me, except those who I love dearly. :) We are all on our own journeys. We all have obstacles that we need to overcome. I respect and appreciate that you will have mountains to climb and that you will feel defeated. I don't feel sorry for myself, I don't want to change our journey, I just have moments.

Of course Adele will get there. Adele will walk. I know that she will, but she needs the proper therapy in order for her to walk properly. This can affect her hips, her legs and her muscles. It's not just about talking, crawling and walking, it's about making sure that she gets the required therapy in order for her to be her best. Do her best. What happens now, affects Adele in the long run. This stresses me out. We receive support from two different services. We recently have added a Developmental Aide contract, where the aide will come into our home 4 hours a week and show us exercises, strategies and provide us with the necessary supports so that Adele will thrive in her environment. I don't want to overdo it, but I also want to get her where she needs to be.

We are starting speech in the next month. Will Adele be verbal? We don't know for sure. She babbles a lot now and makes a lot of sounds. We work on Signing Times, but it's not a guarantee that she will be verbal. I met a young boy and his dad this past summer, he was going into grade six. His dad, educated, articulate and loving, told me that his son is non-verbal. I asked him if they had worked on signing. He said that they never took the time. He mentioned that it's frustrating for all of them because his son is unable to express himself, he in unable to ask for things or have a conversation with his friends. I don't want this for Adele.

Years down the road, I want to look back and feel good knowing that James and I did everything possible for Adele. I will also look back and probably tell myself that I needed to relax a bit more and that I should have worked harder on taking things day by day.
Some things will be easier for Adele and some things will be more challenging. She works hard every day and you can see the determination in her eyes. I am happy that Adele was our second child, she has Brinley to use as her guide. She follows her sister around and sees her playing, walking and listens to her talking. I know that Brinley will work hard with her sister in future years. There is a special bond.

My friend Danielle (Baskets of Love - Down Syndrome) sent this message to me this morning...

I was thinking last night how we all have our own stressors. Each of our little ones are so different which makes each of our experiences different. We are all part of the same club but every journey is different. Conor may be doing well in the gross motor area but all I want is for him to eat. Whereas you're worried about Adele and crawling. There's always something to worry about. We are human. Only thing we can do is be there for each other when we each have our "I dislike Down syndrome" moments and I thank you for doing that for me.

I wonder if in a few years, when Adele goes to school, if all of this will be so minor. I wonder if she will come running through the door and tell me that she has lots of good friends and that she loves school. I wonder if my focus will be on her good health and how she has made our lives so wonderfully complete. Brinley and Adele are two beautiful miracles who were given to us, we were meant to be their parents. What a gift.

Having Down syndrome is like being born normal. I am just like you and you are just like me. We are all born in different ways, that is the way I can describe it. I have a normal life. - Chris Burke

It's not our disabilities, it's our abilities that count. - Chris Burke

I don't like to be different; I would like to be the same. - Chris Burke

 

Krista, Adele is surrounded by love and support and she kicks ass. - Adele's daddy

 

 

Adele's Over the Rainbow Baskets - Down syndrome LOVIN