NDSAW #7 - Nola's Thoughts on Down Syndrome

To be completely honest, I had no idea that having Nola was even an option for us. Once we learned that she was going to be joining the family it was first, about the shock of knowing a second child was on the way and not at all about the sibling relationship between our soon to be 2 children. I never once thought about how Hazel having Down syndrome was going to affect this new baby. I think the shock of the pregnancy carried on until about half way through when we found out the babies gender. It was then that things started to get real.

She was a girl!!! SISTERRRRRRSSSSSSSS!!!!!!

I don't think there was a moment in my life that I ever felt so relieved (maybe after Hazel's 2 surgeries but it's close). This is of course no surprise to readers who have been here a while. I am obsessed with the fact that they are sisters. Immediately, I did a lot of thinking about how the new baby sister was going to affect Hazel. Hazel was going to have a sister. Hazel was going to have a friend. Hazel was going to have a nurturer. Hazel was going to have a caregiver. Hazel was going to have someone out there who loved her just as much as I do. The best way I can describe it was relief. God provided exactly what this family needed. Exactly what Hazel needed.

What I never stopped to think about until recently is just how Hazel will affect Nola? Specifically, how will Nola's sister having Down syndrome affect her. How is Hazel's Down syndrome shaping the person Nola is becoming? I mean she is going to a preschool that all her classmates are children with special needs. That's maybe not necessarily where I would have sent her if it wasn't for Hazel. Not that it's not a great place for her, but would I have chosen that place? We might not go as many places as she would like because it is too difficult for me to bring both my kids out and watch them run away from me in different directions. We don't do many extra circular activities yet. At the end of the day, I am not really sure how this impacts Nola.

What I can tell you is that Nola is just about the most loving and compassionate little gal I know. She loves something fierce. She protects like it's her job. She is the mommy of everyone, all the time. She is wise well beyond her years, she is always up for having a love fest, which is usually on the more aggressive side. She's the happiest, bounciest, sassiest little person I have ever met.

When it comes to her relationship with Hazel, well - what can I say?

They're sisters. She hits her, takes her toys, hugs her, kisses her, tries to give her the food on her tray that she doesn't want and vice versa, takes the food from Hazel that she does. They play, they read, they jump on beds together. They laugh, they cry and they watch TV (they almost never want to watch the same thing). When Hazel is upset, Nola asks her what's the matter and tries to offer her things until the crying stops. She copies her, she teaches her and she learns from Hazel. They pretty much do all the things that a parent dreams their children will do when they find out a brother or sister is on the way. So don't fret if you are having a child with DS, your kids will fight and torture you just as you imagine they might (and then a little worse even). They'll also love and play with each other just as you dreamed they would (and then maybe a little better even). 

Nola is the one person in this entire world who sees Hazel for who she is. Stereotypes do not exist. Different is not a concept she understands. She sees her in a pure and honest way. She knows Hazel is not the same as all the other kids but she also knows that EVERY SINGLE kid she's ever met is different from the next one, no matter who they are. Nola is in an environment where being different IS 'normal'. She goes to preschool with kids who have all kinds of different needs. Some have DS, some have braces, some don't talk yet, some are in wheelchairs. In Nola's world this is "NORMAL". This is her reality. It's what she lives. It's her culture.

The way I see it, Hazel has opened us up to a world we had no idea existed. But for Nola, she will always know this world. This world is shaping her and moulding her into the compassionate, loving little human that she is. For us, we had to learn to accept, understand and unconditionally love but for Nola, it will be who she is right from the very beginning. Everyday she demonstrates a culture of compassion and love. Everyday she accepts difference. Everyday she make me proud to be her mom and even prouder of the little sister she is to Hazel.

NDSAW #6 - Siblings

I have heard that upon the news of a Down syndrome diagnosis some parents are saddened and grieve the relationship that they always thought the new sibling would have with the older sibling. I have also heard that it can be a very devastating to work through these feelings of loss. There can be a lot of fear about the future wondering how the Down syndrome portion of their little brother or sister will affect them as they grow. Worry about how they will interact? What they will have to sacrifice? How will they explain or understand their new brother or sister's diagnosis? Having a newborn with Down syndrome is a difficult enough circumstance to try to understand but having an extra worry centered around how this may affect the whole family dynamic is another kind of stress entirely.

For October and the beginning of November, I chose to share (on IG and Facebook) relationships between brothers and sisters with DS. I chose to share their parents thoughts on the relationship that is developing and fostering among their children. By doing this, I am hoping to give a real and honest perspective from those who witness the relationship, Down syndrome included, unfold everyday in their homes. I am certain that by sharing these accounts new parents will be comforted and feel relieved about what each of these families have to say. Hop over to my IG page and/or Facebook page to read more about each family.

These families inspire me and I was honoured to share the precious relationships of their most precious children. Have a look...

Here's some of what these families had to say:

@littlewarrior (@macymakesmyday pic) says: "It's seriously been so amazing to watch them. God has truly given them a love for people with special needs."

@lilcocobea says: "If only parents were handed this picture instead of a list with information on "their options." 90% of parents opt out and will never truly know what they are missing."

@tarynaki_sauce says: "Nothing could have prepared me for the love and pride he has for Lennon."

@briihenn says: "14 years ago, I was blessed with having a brother with Down syndrome. The day you were born I knew my life would change completely, but you have made me into the person I am today and I could never thank you enough."

@blessedmommatobabygirls says: "She is our sunshine girl...she spreads joy to our entire family"

Which kinda got me thinking, of course I couldn't go without sharing the relationship between my own daughters.
 

Stay tuned...Last post of this series will be my own thoughts about my own daughters. 

This Girl!!!!

Down Syndrome Awareness Month continues with this little angel. There are so many little ones that I would just love to share with you. This month I happened to only choose a few. I can hardly wait to share the rest of them with you. I have met some wonderful families on IG, that just so happen to be sharing and documenting their path with DS. It feels so good to have a virtual family that understands, supports and loves my family for all our differences and commonalities.

This little girl is nothing short of a miracle. She has been overcoming some serious challenges ever since the day she was born. From health concerns that she just made disappear, to being cognitively advanced for ANY child of her age, to being the best big sister to Cameron, and to being just about the sweetest, cutest little doll that there ever was. This girl is the whole package. She is breaking down stereotypes, paving the way for littles with DS. I am honoured that her mama, Lauren, shares her with us virtually.

We had our first Facetime date last week and plan on meeting up ASAP in Michigan. I can hardly wait to lay my eyes and my arms on this sweet girl and her family.

 

Meet Ellie.

ellie

 

Here is what her sweet mama has to say about her,

In a recent FB post, a friend and fellow Ds advocate asked her FB audience, "Ds mamas: We always talk about what we like about Ds, but what do you dislike?" My immediate response, "Nothing!" I truly do love everything about that extra chromosome.

As I sat and pondered my reply, however, I realized that what I dislike the most is the negative societal stigma attached to those two words - Down syndrome. Sadly, when most people think of Down syndrome, the thought of moderate to severe developmental delays and low cognition come to mind. Well, my friends, Ellie is living proof that, that stigma is old and outdated. Today during testing, her new therapists touted her as "brilliant," "amazing," and "remarkable," saying that she is "going to do huge things in life." Little do they know, she already has. She is the most incredible big sister, daughter, and friend. We still pinch ourselves in disbelief that she is ours. What a life she has ahead of her! As far as that stigma is concerned, Ellie continues to break down stereotypes, as do many individuals with Down syndrome. In addition to being cognitively advanced for her age, according to her IFSP/IEP testing, (After all, how many 2 years olds do you know that can nail first-grade reading comprehension questions; recite all of their letters, numbers, shapes, colors; and sight read more than 150 words?) the experts say that she has only a mild speech delay. Again we were encouraged to push full steam ahead with regards to full inclusion when it comes to preschool a year from now. Breaking down old stereotypes, smashing negative stigmas, and promoting both acceptance and inclusion of individuals who happen to be rocking an extra chromosome, that is what Ellie is all about. The sky is the limit and we couldn't be more proud of our amazing Ellie!

Ps. Her mom says that when she's wearing this outfit, she really does believe she is Cinderella.

Such a sweetheart!!! I am so SO SOOOOOOOOO proud of this little girl and her accomplishments.

Much love to Ellie and her wonderful family...xo

DSAM - Love me some Abby & Bailey

In an effort to continue to advocate during Down Syndrome Awareness Month, I'd like to introduce you to a couple of little girls that emanate pure joy in ALL that they do. Seriously, I dare you not to smile when you see Bailey's sweet sweet face. I met Christy, the beautiful mama of Abby and Bailey on IG. We are virtual friends. Her feed lit'rally brightens every single day for me. These girls have smiles that WON'T quit. After having Bailey, they adopted Abby. Happy endings do exist!

 

abby1

 

I was looking through my IG feed one day and I came across this pic of Abby. Then I read her mama's words. I was speechless. I stopped and stared at this sweet girls pic and I just thought...

YES!!!! YES!!!! YES!!!!

This is exactly right. I feel the same way. Truer words have never been spoken. I am so proud to be a part of this world. Yes, it's challenging at times. But, LOOK!!! It's worth it. Every time I have second guessed myself, or Hazel. All the times I cursed having to do therapies with her. All the times I wished that "that one thing" was just east for her to do. It's all worth it.

Well just read Christy's words.

abby

 

She says it best...

"Can you imagine what your life would look like if things that came easily to others weren't so easy for you? What if things like walking and talking and writing and jumping, and swallowing were things you desperately wanted to do but had to work and work and work to accomplish them? Would you do it with a smile on your face? With determination and without giving up? Today Abby drank from a cup unassisted, and she did it beautifully, remembering all of the instructions given to her by her speech pathologist to help her swallow safely and prevent aspiration. Girlfriend rocked it and grinned the biggest, proud of herself grin ever when she was done. I don't know when in the history of mankind that people with special needs became the ones that were made fun of, picked on, and not given opportunities to thrive. If anything our society needs to be looking up to these individuals who work so hard to accomplish things that often come so easily and naturally to their typically developing peers. Some days I want to weep for my daughters because of the way society has imposed its untrue and unkind stereotypes on them. Every single day I want to applaud them for determination and hard work and abilities. They inspire me."

AMEN!!!!

 

This is Bailey. AHHHHHHHH!!!!!!! I. Can't. Even.

bailey

 

This family is beyond inspirational. To follow along with Abby and Bailey's journey please find them on IG at user name "cjpics." Christy's words about adoption are raw, true, emotional and inspirational. Every time I read a post about her sweet Abby and their experience with adoption it's like I'm receiving a call to action. There are babies out there that need homes, love, support, mamas, dada's, brothers and sisters. These babies need medical attention, therapies and TLC.

To read more about adopting a baby with Down syndrome, please take some time to visit Reece's Rainbow. A website dedicated to finding sweet little angels with Down syndrome their forever homes.

 

 

Hazel LOVE

Guys!!!! My sister in law has dedicated one of her gorgeous blanket designs to HAZEL!!!!! It's called "Hazel Love." It's a limited edition...so order now.

HazelLove

Timing could not be better. Down syndrome awareness month is still upon us. She has decided to donate part of the proceeds to our local charity that support Down syndrome, Up About Down.

She does not have this blanket listed on her website yet, so feel free to head over to her Bellalulubaby Facebook page and PM her if you would like details on how to order.

Down Syndrome Awareness Month

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This is the 3rd year in a row that October has held special meaning for us in this house. Hard to believe that 4 years ago I would not have even noticed a reference to Down Syndrome Awareness Month (DSAM), let alone have a blog that dedicates much of its time to advocating for those who have DS.

I would never go back to the me "pre DS." There's so much I would like to go back and tell myself about the beauty that I was about to experience (not that I would have believed me). It's a very difficult thing to do - accept the unknown. And hear I am now, almost 3 years later, not only accepting but loving, living, breathing, educating, advocating, supporting, challenging and hopefully most of all...

CHANGING.

Changing not only my outlook on Down syndrome, not only our family's and friend's outlook - but YOURS. All of you. Every time you take the time to come over and visit us here on Chasing Hazel. Every time you share something on our Facebook page or like a picture on our Instagram feed, you are showing your support.

Support for Hazel - yeah sure - but also support for all those with Down syndrome.

When you look at Hazel with love in your eyes...

When you celebrate her accomplishments with us...

When you realize that she's a little girl that has learned to walk, talk, play and have temper tantrums...

YOU ARE INVITING KNOWLEDGE ABOUT DOWN SYNDROME INTO YOUR HEART.

How many of you have come across an individual with DS in the community and been a little less intimidated to speak to them because you know Hazel?

Oh - I hope A LOT!!!

Yes, this month is about raising awareness but I hope that we have been doing a good job raising awareness all year long and not just this month.

Guys I don't write this blog to make money, I don't receive any endorsements, funds or grants for the time I spend here writing. I don't publish posts because some body asked me too.

I do it for Hazel.

DSAM

I do it so that you feel a little less intimidated by her. I do it so that you know that people with Down syndrome are beautiful, just as any other person. They have a great deal to offer us. I do it so that you can experience just a little part of the joy and love that we experience everyday. We don't just experience joy from Hazel, but from all the individuals that we have welcomed into our hearts since the beginning of this journey. I know a love now that I can't even begin to explain. My heart swells with pride for all our little friends with DS. Their accomplishments, are our accomplishments.

We are in this together. All of us. We are paving the way. But first we have to take out our power tools and heavy machinery and break the very hard concrete roads that are already laid. We need to change the infrastructure and then pave a new road entirely. Our new roads bend, weave and fork in ways that we never thought possible. At the end they join together and lead us to a most breathtaking view.

I am calling on you. Won't you please help me?

Talk about Down syndrome in your homes, share our Facebook links, open your hearts up to something a little different, teach you kids about it.

If there is anything I can do to help I am IN!!! ALL IN!!!! Email me or post a comment.

Happy Friday!

I have no idea how I missed posting this pic? One of my favs for sure. These two...ugh. I can't even deal. fri

 

Also, on another note. I know that it's Down Syndrome Awareness month.

I do, I swear!

I just feel like I am taking it all in at the moment. There's a lot of buzz about DSAM right now on all my social media channels. IG is a big one. Some mamas out there are doing a beautiful job bringing awareness and recognition to the cause. I may even introduce those here one day soon, so you can follow along too.

To tell you the truth I am not quite sure where I want to head this month. I am still making up my mind. There is a battle between celebrating what has become "normal" for us and still trying to advocate for the cause.

Another truth, I sometimes struggle to see Down syndrome as being a "cause." People who have it, deal with it. Families who live with it, love it. Kids grow and change and spread wings and plant roots and - well - I think you get my point.

Anyhow, I think it's important to continue to educate, learn and watch as these incredible little humans find their way in the world. I guess, trying to breakdown stereotypes is still a very real issue in society. Maybe that's where I will focus this month?

All I know for sure is that I can't do it alone. I need you. Your support.

Maybe your contribution this month is to share a useful link about Down syndrome on your social media channels. Share a status you come across, blog about it, tweet about it, post a pic on IG. Maybe it's from Chasing Hazel, maybe it's something you come across on your own (in which case please share it with me too).

Let's work together!!!!

Even only for one month, to try and breakdown stereotypes. Try to spread positive insights and stories about Down syndrome. Not exceptional - positive. There's a huge difference!!!

I know you guys will be into it. You are some of the most caring and loyal readers out there. Much love to you all!!!! And of course, Happy Friday!!!

 

3-21World Down Syndrome Day 2014

PicMonkey Collage First I wanna say that I am overwhelmed by the Facebook and IG love we received yesterday. WOAH!!!! We feel very warm and fuzzy over here.

 

What can I say here on World Down Syndrome Day that I haven't said before.

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It is important to say that Down syndrome is our everyday life. It's "normal" for us. Hazel just is. She is...

Our daughter, a sister, a 2 year old, a little girl, a cousin, a niece, a granddaughter, and a friend.

She likes...

To read, play, eat, sleep, sing, dance, walk, run, play outside, go places, be free, give hugs and kisses, watch TV (The Voice and The Wiggles) and so much more.

Down syndrome, a once very scarey thing for us, has become a part of our everyday. It is no longer scarey. It is no longer the unknown. That certainly doesn't mean that we don't have concerns for the future or worry about what challenges lie ahead. We do. Trust me we do. But why worry about the possibility of a future challenge or problem, when all is perfectly well right now.

Sometimes I lose this battle. I find myself really panicking about school, or her friends, or whatever.

Then there is a day like today.

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PicMonkey Collage2

And I remember that we are not in this alone. I remember that we have all of you. I remember that our hearts and minds have been opened to accepting that which is "different" (but not really). I feel genuine love and support. This day where I didn't have to ask you all to wear your crazy socks or your t shirts to show your unrelenting commitment to showing the world that Hazel has a place in it, as do others who share her extra chromosome. You just did it and shared it and ROCKED IT!!!! I'd like to see anyone try to disrespect Hazel in any way. They would have all of you to deal with. Our village is becoming a fortress. Again, I am honoured to be part of it.

So many things made me happy today. Thought I would share some.

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w3    w7

w6

seguin

axel

If having trouble viewing click here
 

joli

h1

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h4   h7

h8

(yes...this 11 year old painted this for Hazel)

PicMonkey Collage

vita

nicki

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chris

THANK YOU!!!

 

Top 3 Physiotherapy Activities

It has been a great summer in terms of PT for Hazel. We have been given a bit of a break. Hazel has been going through a huge gross motor change and focus since she has figured out how to walk. It's so nice to let her just do her thing and watch her try to figure out how her body moves. She's constantly experimenting with movement and balance, dancing and swaying. Some of our best entertainment is to just sit back and watch her go.  

Small Disclaimer: I just want to remind everyone again that these activities were given to Hazel, for Hazel, by her PT. If you would like to try any of these at home with your babes, please ask someone in your local community for support and advice on what will work best for your children. Also, we always follow Hazel's lead in terms of how often we work on certain skills with her. If she doesn't want to, we don't force her (especially with PT - she has a motivation that is all her own - Yikes!)

 

Please feel free to leave any questions you might have about Hazel's therapies in the comments of this post, or email me and I would be glad to answer.

 

ptimage
 

1. Stairs

This one is difficult for us to do on a regular basis because we have a ranch. Whenever we go somewhere with stairs, I try to get Hazel to go up. She can go up if she chooses to, BUT we all know if she doesn't see the value in it, then she really doesn't see the point. So there's that...

We are now starting to work on going down the stairs. It usually results in tears of some kind, but only because she is not in full control and needs help to get where she's going. Although, lately she has been very interested to learn how to go on her belly down the stairs. I think she realizes going down gives her freedom to explore new places. FUN!!!

 

2. Riding Toy

PTbike

We are working with her on being able to move the rider herself. The goal being to get her to activate her hamstrings and pull herself along.

And to be completely honest we don't put her on it as much as we should (it's been a little more difficult for me to bend that way for long periods of time). It doesn't usually happen at this point, but she has started to show interest in being on it. I am not sure if it's too slow for her and she wants to get off and walk or if she doesn't really see the point in sitting on the car. She likes to get off and on but no forward movement so far. She has managed to make it go backwards a few times.

PTbike1

PTbike2

 

3. Walking Toy

Hazel has been showing interest in using the walking toy recently. It was difficult to get her to want to do this, as crawling was so much faster for her and she knew it. Now that she is more comfortable walking, she seems to want to do this more often. I know it seems backwards that she learned how to walk without it and now she wants to push it.

Even though babies know how to walk it is still important for them to learn how to push, pull, and maneuver different push toys. Eventually they learn how to reverse, go in a zig-zag pattern and so on, which is important to children's development.

Here's how we start...

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And usually how we end...

pt1

 

I like this push toy because you can determine the weight that goes into it. We have 25 lbs in the base so it WILL NOT tip over when she pulls herself up on it. I think you can get them at IKEA. I also like it because there are no "bells or whistles" on it to distract her from what she is supposed to be doing - pushing it.

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pt2

 

 

Helpful PT & OT Resource:

You can find more information in the book, "Fine Motor Skills in Children with Down Syndrome."

I love this book. It really breaks down all the tasks and skills that help children to learn and develop. It gives useful toy suggestions and great teaching techniques. Even though it is more focused on fine motor (OT) activities rather than gross motor, it does touch on PT as well. I will refer to this book more when I do the next OT post.

 

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There you have it. PT in a nutshell!

WOAH!!! Here we are again...

DSA4
  Here we are again in October. A very special month in our home since the birth of our girl, Hazel. One of my goals with this blog has always been to advocate for those with Down Syndrome.

I believe the best way to ADVOCATE is to EDUCATE!!!

I have been trying to create and share posts that both generate interest and discussion AMONG YOU. I try to include resources that you will enjoy and find useful. I have also linked to other blogs and websites that I find inspiring or informative in sharing other stories about Down Syndrome.

I hope I have succeeded in this goal. Please let me know if there is anything you would like to see me address or add in the future.

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DOWN SYNDROME AWARENESS MONTH ON CHASING HAZEL:

I will feature...

1. One post on Physiotherapy

2. One post on Occupational Therapy

3. One post on Speech Therapy

4. At least one new resource for your homes or classrooms

5. Of course, the regular Friday posts will still be posted. As well as other quick updates and IG pics.

AND FINALLY...

6. Hazel's Birth Story

I can barely wait to share it with all of you. I feel that it fits perfectly with the theme this month.

In it, I share a lot of feelings about Down syndrome and how it began to filter into our lives in the very beginning. I give you an honest recollection of how it all played out. I really feel that I put my heart out there for you all so it's going to be tough to hit that "publish" button. Also, when I do share it with you, I will probably sign off for a bit to welcome a new little soul into our home. And I will surely be writing another birth story to share.

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Please feel free to share any or all of the posts this month. We always need your help to spread the word and support those with Down syndrome. This month just makes it that much easier to do it.

Thanks for your continued support!!!

dsa1
 

Just in case you missed this pic on Chasing Hazel's Facebook page (we only need 2 more "likes" to get to 500. I can't believe it!!!) or IG feed (user name Chasing_Hazel - Come on you know you want to join us!) I thought I would post it here.

Feel free to let me know what you are doing to honour DSAM. There are a lot of great blogs out there that are doing wonderful things to celebrate. Check out this BLOG HOP!!! I love to hear from other families and those of you who advocate as well.

Thanks for checking in on the blog, especially this month!!!