Melissa Riggio Shares Her Thoughts

 

Here is an excerpt from an article from the National Geographic Kids website. Melissa Riggio is sharing her thoughts about what it is like to have Down syndrome. She is very honest and mature in the way that she describes what her life is like and what her dreams are. She says,

"I can’t change that I have Down syndrome, but one thing I would change is how people think of me. I’d tell them: Judge me as a whole person, not just the person you see. Treat me with respect, and accept me for who I am. Most important, just be my friend.

After all, I would do the same for you."

Please read the the rest of the article here.

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Lesson:

This article could be incorporated into a lesson in so many ways. I will leave it to you to decide how you will use this. It could be as simple as...

1. Reading the article independently and doing a journal reflection

2. The teacher could read the article and have a class discussion

3. Could be used in center work or even as guided reading material

I am sure you all will come up with more innovative ideas than that but I thought I would put it out there. And as always....

Please feel free to share how you used this resource in your classrooms and/or homes and also tell us how your students reacted to Melissa's story.

Last Visit to the Cardiologist

While we are still adjusting to our new home life, new routines, and new roles I have this update from last month. I hope to get some pics of the girls up on the blog soon! *************************************************************************************************

Just a quick update on our last visit to London. It was in early October, but you know how things are - time is flying. Hazel had just turned 20 months. She weighed in at a whopping 26 lbs and 33 inches. It is almost unbelievable to think that at some point she was only 4 lbs.

She received another glowing report from the cardiologist and his staff. She is always putting on the smiles and blowing kisses to them just to make sure they eat out of her hand (like they weren't already). They adore her, and we adore them. We have come to know them all so well and respect how well they have taken care of our girl. She really likes the tech who does the ultrasound on her, all holding his fingers and whatnot. LOVE IT!

And of course we try to NEVER miss an opportunity to see our NICU fwends.

All of which are getting so big and active. We certainly weren't sitting on the blanket having a nice quiet picnic this time around. More like trying to maintain a zone defense and make sure to keep all our littles corralled on the playground.

Love these little trips so much...

Sadly we missed out on seeing our other 2 little fwends, Carter and Ella. Hope to see them soon!!!

Hazel Loretta - A Birth Story

Finally...I am posting Hazel's birth story. I know I meant to get to some other posts for Down Syndrome Awareness Month, but I am also trying to be very conscious that I have another babe on the way that needs me to rest and relax so I am ready when she decides to join us out here. There's always National Down Syndrome Awareness Week in November. Hazel is only going to be an only child for another couple weeks, so I am trying to soak up every minute of her that I can in the coming days.

Long story short - this will be my last post for a while. Bitter sweet for us all (I hope). I miss the blog when I am away from it, but I will come back with lots of new material and some old, that I have prepared ahead. I am not going to completely unplug. I will, as always, be updating my IG feed (follow us at user name Chasing_Hazel) AND I will still be posting pics and small updates via our Chasing Hazel Facebook page (jump on over and give it a "like").

Hope you all enjoy this read. It's a long one so you may want to do it in parts. I put my heart on the line with this one.

Can't wait to share our new little girl with all of you...Thank you so much for your support, your love and your interest in our little family.

Leaving you all with much love in my heart.

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"Did you guys know?"

A very common question that we’ve been asked since the birth of our daughter, Hazel. Down Syndrome - really? Trisomy 21? How could that be?

Yes we did – Wait (pause for dramatic effect) Did we?

Well, that’s the simple answer. Right? It makes perfect sense.

However, the full story is not simple. It is painful, long and feels like the pieces took a very long time to fall into place. The happy ending has already been documented and continues to flourish but for a long time it seemed unlikely that the end was near and the last thing it seemed was happy.

I hope that after reading this story you are able to identify and relate to 2 people who overcame fears, learned how to truly accept what is, and who were completely vulnerable to what the universe had hidden up its sleeve. I also wish that through this story, you might gain empathy for others that have had to surrender themselves to a universal plan that was far beyond anything they could ever have imagined or controlled.

By living this story, I have realized that life has a way of providing the experiences that we NEED to make us more compassionate people. More importantly, it usually has little to do with our own perceptions and ideals about what will help us along. Indeed it is what will enlighten and empower us, we just have to accept it for what it is.

In the end, it all happens just as it is supposed to.

Happy reading!

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As I sat down and tried to write this some months ago, I found that it presented more challenges than I expected. It became painfully obvious that I was having a hard time separating my fertility story, from my pregnancy story, from Hazel’s birth story. I was not ready to revisit the fertility battle, nor was I ready to recollect and explain my pregnancy in detail. Advice was desperately needed. I was determined to get this birth story out there somehow. The advice I received to help me get this process started was, that all of those experiences do not necessarily have to go together and form one story. I could dissect each individual part and write what I felt I could handle and relive again. Turns out that I do revisit the pregnancy in some detail.

Mostly, this is a birth story.

Please click here to continue reading...

WOAH!!! Here we are again...

  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!!!

 

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!!!

Filling up our tool boxes

WARNING: There is a rant coming your way. You might want to leave now while you still can (but I really hope you don't - sniffle) or grab a coffee and come back prepared to take a moment to read my plea about "milestones."

Oh good, I am so glad you stayed...here goes.

I don't know if you've noticed over the course of reading and following the blog that I am not really one for comparing other kids, worrying about when milestones will be reached at what time, or giving praise for how quickly some kids do things compared to others. I am not sure how many times I have been asked...

"Is she walking yet?"

I always just answer in the most honest way that I can and hope that it satisfies the person asking. I find it interesting how our culture and society is always worried and focused on that next step. We just don't spend enough time focusing on the present (which if y'all have been reading for a while, know how I feel about "being present"). Enjoying the phases our kids go through in that moment. Let me ask you this...

"What is the next milestone you are going to ask me about if I tell you she IS walking?"

What do you want to know about after the walking? I have no idea what is after this. Is it talking? Running? Reading? Drawing? I'm not sure.

What I can tell you about the way that I see things is that every child reaches milestones when they are ready. We can't force them to feel confident enough to take that first step, say their first word, turn the pages in a book or feed themselves with a spoon. All we can do as parents is be there to teach, support, challenge, be patient and give them a soft place to land when the first 50 attempts end in a little heap on the floor or a huge mess on the wall. Developmentally, as our children show interest in these things, we start to fill our tool boxes with the necessary items to help them achieve, progress and grow.

Even before Hazel came along and taught me about being present, I mean really forced me to live in the moment, I never placed much emphasis on what milestones kids were reaching when. I would always be there to celebrate their success but never wonder when they were going to do certain things. Of all my nieces and nephews, I couldn't tell you what age any of them were when they started to meet milestones and become the little people they are. I am just proud of them. All of them. For the things they can do and the things they are learning. I like the people they are becoming and to me that is all that matters in the end. I'm just glad to be a part of the journey.

In the last 18 months (cause Hazel is 18 months now...crazy!) I have met and become so close with so many other mamas who have babies with DS. I embrace every single milestone that their children reach. I am proud of them. I know what goes into being a mom of a child with special needs. I know how much effort and energy goes into OT, PT, and Speech. I KNOW some of what's in their tool boxes. I get it.

Are all our babes reaching milestones at the same time? Of course not. But we all take out our hammers, levels, and cordless drills and give it the best we got.

Mamas to typical children: Do your children reach milestones at the same time as their peers? Of course not. But you take your measuring tape, screw driver and chalk line and give it the best you got.

Children are individuals and that is what makes them ours. That is what makes them the people we love. Watching them overcome challenges and hurdles is what makes us beam with pride. To see something that was once so difficult become so easy, makes us proud.

In the end we are all the same. We all want what is best for our babies. We want to provide the foundation that they need to become stronger, successful, stable, productive members of society. It's just that the tool box we use is filled with different tools and tricks.

But it's ok...there's more than one way to build an empire (just ask the Romans).

Sometimes we share the tools of others because they make sense to us and sometimes we hoard our little boxes and stick with what we know works best for our kids. Either way, we have all spent the time slowly collecting the tools that are helping us do what we need to do.

Make our children happy.

So I guess I just took the really round-about way of telling you all that Hazel has started to walk.

She took her first steps at 16 months and has been practicing at her own pace ever since. She is still very wobbly and it ends in a heap on the floor a lot of the time, but she is proud of herself. She is confident and she gets back up and tries some more. To me this is a success. Looking at her determined little face makes me feel like my box has all of the right tools stashed away in it. I'm sure in the future I will take some away and add others, but for now I feel fully equipped to build my empire. My empire is Hazel's confidence. As long as she gets back up and tries again, I am proud.

She was not letting go of that stick for anything. Also, she was giggling and laughing the whole way walking down the sidewalk.

Keep on gettin' back up baby girl. You got this!

It's the small things

I have so many posts to get up at the moment, but I feel that this interaction between a publishing company and myself needs to be shared with all of you. If you follow us on Facebook you may have seen this interaction take place. If you are not following us on Facebook, what are you waiting for?! Head on over and "like" Chasing Hazel's page, here.  

Plus, it allows me an opportunity to mention a new series I am thinking about introducing on the blog. I would LOVE your feedback.

This new series would include:

A section all on its own dedicated to educating parents, teachers, children and anyone that may be interested about Down syndrome. Mainly, the goal will be to try and provide resources that are helpful for parents and teachers to educate other children about what it means to have Down syndrome.

What brought this on?

I have been noticing that children, even those that go to school with someone who has DS, tend to have questions about Hazel. Questions about why she looks different than them, or they wonder if she will ever learn to read and so on. It sparked some interest and concern as to what Hazel's peers REALLY know about Down syndrome. I decided that I would try to help in whatever way that I could. Admittedly, I did not know a great deal about Down syndrome before Hazel, aside from my own teaching experiences. So I can understand where that disconnect might occur.

I would say that the most important thing is to recognize each child as an individual. I think sometimes kids who go to school with other kids who have DS, think that ALL kids who have DS are the same. This couldn't be farther from the truth. Just as typically developing children all achieve goals when they are ready, or have unique strengths and weaknesses, so do children with DS. I hope that when Hazel goes to school, her peers understand that just because she might not be able to do the same things as them at that time, it doesn't mean she will NEVER learn to do it. Like all kids, kids with DS achieve goals at their own pace and when they are ready.

Recently, I was doing some research for online resources to add to this series. I came across a book called, "My Friend Has Down Syndrome." Great!!! Excited, I quickly wanted to read the description of the book. Needless to say I was very upset with what I found. It said:

"My Friend Has Down Syndrome describes a condition that affects many families. Younger children are normally puzzled when they encounter other kids who suffer from Down Syndrome. Here is a heartwarming and reassuring story of how an ordinary child comes to understand and befriend another child who has Down Syndrome."

Immediately, I emailed the publisher to express my concern for such a negative and inaccurate statement about children and families with DS. This description was on all websites that sell this book (big names). I felt it was sending a VERY false message to those looking to learn about DS and thought I would see what I could do.

The company was very apologetic and were also very willing to change the description right away. The new description for the book is now as follows:

My Friend Has Down Syndrome explores this common chromosomal condition from a child's perspective. Younger children may be confused and have many questions when they encounter kids who have Down syndrome. Here, in this reassuring story, two children, one with Down syndrome and one without, learn that they are both good at different things and that by helping each other overcome their fears and difficulties they can accomplish a great deal together.

So much better!!!

So really it is the small things, that contribute to the bigger issues that perpetuate stereotypes about Down syndrome. I was happy to try in one small little way to help society become more accepting of those who might be a little different. Can you please try to do the same. Chasing Hazel readers have always been so supportive and accepting of all that DS has to offer. Collectively, we need to try to reach those who do not know the beauty and blessings of DS. Please help Hazel by sharing this on your social media channels, such as Facebook, Twitter, etc.

So I am interested to hear what you all think? Please leave a comment and tell me if there is anything you would like me to add to this series, helpful resources you might have found or things you have noticed that you would like to see addressed. Please share with me how you educate your children. Perhaps, some ideas that have worked for you and your families.

Calling other Mamas!!!

Other mamas that have kids with DS, please feel free to weigh in here. I would love to hear from you! Do you think this is necessary? What would you like others to know about your children? If you don't feel comfy leaving a comment, you can always e-mail me.

Oh...Nothin'...just some dreams coming true

Back in the NICU days, where we met some wonderful friends, we used to dream of a time that we could bring our kids to the park or for a picnic together. Some days we would sit and dream about what it would be like to have our little babes out in the open air, beyond the walls of the hospital. We wanted to make it happen last year but with Hazel's heart surgery, summer came and went. Picnics and days at the park were few and far between, if any at all. Well - it finally happened. A picnic and a whole afternoon spent at the park with our friends from the NICU. And we even got to see the nurses who played such a HUGE role in helping us all get on our feet!!!

I was in my glory the afternoon relishing in the moment. One of our dreams came true right before my very eyes. The kids all ate lunch together on blankets, chased after bubbles, got super messy faces, drank out of anyone's sippy cups but their own and splashed around in the water.

Adventures in the splash pad. We laughed, they cried (and by "they" I mean Hazel), we hugged, it was all good.

Here is how Hazel spent the entire ride home...

One of my all time favourite days, with some of my favourite families!

PT & OT for Children with Down Syndrome

Since Hazel started crawling our main focus for physio has been to encourage her to crawl as much as possible. We have not been working at all on bringing her to the next step which is walking (although she has her own ideas about standing independently and cruising). I am a huge fan of keeping her crawling for so many reasons.  

1. She's easier to chase after while crawling

2. She is getting so much more coordinated by strengthening all her muscles by using them often and equally.

3. She is acquiring a keen body awareness for all her muscles. Even down to the pincer grasp. It is coming along nicely since she is constantly aware of her fingers because of the constant weight baring through her arms while crawling.

4. She is easier to chase while crawling (Oops...already said that)

Small Disclaimer: I just want to remind everyone again that these activities were given to Hazel, for Hazel, by her OT and 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.

Another Small Disclaimer: My intention for these posts is to provide ideas and information about OT, PT and Speech for anybody who feels compelled to learn or is interested in what it looks like in our home. It is NEVER to compare Hazel to other children. My favourite thing about kids is that they are all different and do things when they are ready and in their own time.

Also, we have stopped doing some of these activities and still continue to do others. Since she has started standing and cruising on her own we have added some new activities that I will include in the next PT/OT post.

The activities this time around speak for themselves...

 

1.  High Kneel on Couch

2. Pull to Stand & Cruising

We use anything that is the right height for her to pull up on. Actually she is good at scanning a room and trying her darnedest to pull herself on everything in it. (Who says "darnedest"?)

3. Bench Sitting

We have the toys within reach on either side of her so she has to turn and reach/lean down to grab the toy and bring it up to center.

4. Crawling...crawling...crawling

 

1. Self feeding with a spoon and fork

She does great with this as long as I load it for her. She is pretty proud of her self, actually!!!

2. IN & OUT

We practice with anything and everything. PRAISE!!!! Girlfriend can put things IN & OUT!!!

Here is a pic of the toy that really drove the concept home for her. She is obsessed!!!

3. Lots of listening to music while we play

Listening to music facilitates movement and also allows me an opportunity to add actions and signs that she is starting to learn slowly.

4. Working on early feeding signs

We are working on "more", "eat", and "drink." She has mastered "all done" and knows when to use it. The other are more difficult because she won't let me use her hands to show her how to do it. She just gets mad and pulls them away. (Same with loading her own spoon, won't let me guide her hand)

5. Pincer grasp

Like I said crawling has helped her a great deal with this. I just try to give her small pieces of food and try to encourage her to use her fingers to grab it. We are laid back about it but it is coming along. We are going to start using 1 inch cubes and smaller toys for her to try and manipulate them with her fingers.

Have a good week everyone!!!

Hazel's 1st Family Vacation

That title sounds like a kids story book...hmmmm

There were so many photos taken and memories made that it is going to be a huge challenge trying to keep this post short. I guess some of the details will just have to stay in the family (especially the parts where we fought and yelled at each other…hehe).

In all honesty, the trip could not have been better. The weather was amazing, the house was perfect, the adventures were adventurous, and mostly the company was entertaining. We were all sad to see it come to an end, and I assure you Hazel has been looking around for her cousins over the last week. I can also assure you that, when she looks around and there is only me, she is disappointed. She has become quite used to her daddy being around all the time. She is his biggest fan.

One of the most rewarding parts of the trip was to watch Hazel bond and become accustomed to each family member. By the 2^nd day, she was extending her arms out to Stella for comfort and to sing songs. She learned Lilly’s name and she copied all Emi’s dance moves early in the mornings. She quickly learned that Auntie Paula was one to make friends with. Every time Auntie looked at her, Hazel gave her an adoring smile from ear-to-ear (sometimes Hazel would just stare at her until Paula looked and then reward her with a HUGE adoring smile).

By the end of the week, she had smiles and kisses for everybody. Watching the relationships grow and blossom into LOVE and TRUST, was a beautiful thing, and an experience I will treasure.

Another aspect of the trip I treasured equally was, watching Hazel experience new things for the first time. As all parents, part of our job is to create new experiences and opportunities for our children to learn and grow. This trip allowed us the opportunity to let Hazel fly on a plane, sleep in a different bed, eat different foods, meet old family friends, play in the sand, swim in a pool and feel the ocean on her feet. We are excited that we were able to provide these opportunities for her and really can't wait to expose her to more.

She's a freaking strawberry!!!!!

We will be looking forward to making more memories with our family but for now we will hold on to and cherish the ones we have just made. And after my family reads this post they will know how I really feel, so the secrets out.

I guess, I don't think they're half bad. None of it would have happened without a very generous and loving gesture from Pip. There are no words of appreciation that could ever possibly be enough. Thank you for the memories.

ALL HAIL Princess Lilly...

The Grand Floridian dinner...

Dinner at The Bohemian...

Hangin' with the girls...

  

Dancin' in the streets of Downtown Disney...

Hands DOWN, the funniest pic of the bunch...

"So guys...this whole thing was a blast!!! Let's do it again. Who's in???"

We are blessed friends...

Happy Friday

Happy Good Friday!!! We hope you have a great Easter celebrating with your families, friends or simply just taking a few days away from work. Enjoy!

We need a favour:

Baby Annie needs some good-ol'-fashion-Chasing-Hazel LOVE and SUPPORT. She is 6 months old and going for heart surgery on April 1st. Annie needs some prayers and positive energy sent to her and her family. You can see a pic and read more about Baby Annie here. Her mom writes a beautiful account of meeting her new baby and all the blessings that Annie has brought to her life so far.

While you are sitting around your tables this weekend, or when you are taking a quiet minute to yourself, please try to remember Annie and send her strength and love.

You are going to do great Annie, we are all thinking about you. Good luck baby girl!!!

Please feel free to leave a comment here to let the family know you are thinking of them. It helped us tremendously to know you were all behind Hazel when she was going through her heart surgery. Thanks everyone!

Strength & Love

March 21, 2013

Happy

WORLD DOWN SYNDROME DAY!!!!!!!!

First off, I want to say how extremely honoured I am to know what this day means now. We are so proud to be a part of this day and celebrate difference and perseverance.

Over the last year we have met so many wonderful people. We have worked hard and overcome challenges. We have changed our ways of seeing and accepting others (all "others" not just individuals with DS). We have welcomed a warmth and a light into our hearts that will keep us cozy forever. We know that challenges will await us, but we also know that there will be a overwhelming amount of pride for our girl in the future.

Today with Hazel, there will be an underlying thread of gratitude in every kiss and a deep appreciation for the perspective she has given us in every hug.

Onward...

This is a very exciting day for the DS community. It is a day dedicated to raising awareness and education about individuals with DS. The following is from the World Down Syndrome Day (WDSD) site. I copied their description here so that you could read what they have to say without going anywhere else, but please take the time to visit the site when you have time.

I particularly LOVE the paragraph about the "internet being a powerful tool for raising awareness."

It allows us all to do our part through various social media. Anybody can help to celebrate WDSD, if only by tweeting 1 tweet (or Retweeting a tweet) that you find interesting or important. Or by sharing a link on your Facebook pages. Even just a simple status update that calls attention to the cause. Oh, yes - and you can even share on Pinterest.

WDSD states:

"21 March 2013 marks the 8th anniversary of World Down Syndrome Day, a global awareness day which has been officially observed by the United Nations since 2012. Each year the voice of people with Down syndrome, and those who live and work with them, grows louder. But there is still so much more we can do.

Down Syndrome International encourages our friends all over the World to choose your own themes, activities and events to help raise awareness of what Down syndrome is, what it means to have Down syndrome, and how people with Down syndrome play a vital role in our lives and communities.

The internet is a powerful tool for raising awareness and we encourage people to celebrate World Down Syndrome Day through your own websites, blogs and social networking sites. However, we want to create a single meeting place where everyone can share their experiences and advertise their activities.

Join our cause to create a single global voice for advocating for the rights, inclusion and well being of people with Down syndrome on 21 March."

Today I thought I would list my Top 5 favorite blogs that raise awareness for DS. I know I have listed some in the past but I wanted to make it really easy for you all to do some educating or to spread the word and raise awareness yourself. Click on the images to take you the blogs. Happy reading!!!

1. A Perfect Lily

2. Enjoying the Small Things

3. Little Olsen

4. The Future's Rosie

5. Noah's Dad

Chasing Hazel readers have always been so loyal and supportive. We could not have gotten this far with out you!!! Thanks so much in advance for your continued support in helping us to advocate and create positive discourse about Hazel's future.

So please, if only for today, TWEET, SHARE, LIKE, and PIN away about Down Syndrome. Do your part to spread the word and educate.

Peace, Love and Acceptance

A reflection on Judgement

I have chosen to do a post today about Judgement, in honor of Non-Judgement week. Visit The Conscious Perspective for more deets on Non-Judgement week.  

A wise man once said to me: "Never judge a mother - unless you know for a fact what she is going through - you are not allowed to judge." Brilliant!!!

Now that I am a mother and I have done things that are very questionable in the name of sanity, I 100% agree with the above mentioned quote. I have done things that I never thought I would.

I specifically remember a day at the mall with Hazel and my mom. At said "day-at-the-mall" there are vivid memories of me in a side hallway on my hands and knees trying frantically to make a bottle. While my mom tried to change a dirty butt diaper with Hazel in her stroller.

Yeah I said "stroller!"

We did not walk to the "family bathroom" and use the "change table" because I LITERALLY could not imagine walking all the way back there with a screaming, hungry, dirty baby. We were close to a somewhat secluded hallway in a busy, public place so, it was as good a place as any...right? We all got out pretty much unscathed, except for my dignity - but I mean - whatever. Being a mom means sacrificing your dignity...doesn't it? Please tell me it does for you too!!!

Anyway, my point is DON'T JUDGE ME!!!!

Yes!!! I changed my kid in a totally inappropriate place AND I didn't "take my screaming kid home" - but I do acknowledge that I shouldn't have done the former and should have done the latter.

Needless to say I don't judge mothers EVER - for any reason!!! That day I couldn't bring my kid home because my house was under heavy construction. That little episode took place after a day out of the house with a baby trying to keep ourselves occupied and sane. Clearly we only accomplished 1 of the 2. You just never know what is happening in someones life so please try not to judge!

On a more serious note:

Part of the reason I started this blog was to rectify or aid in the inaccurate judgements or perceptions of those with Down Syndrome.

One of the blessings that Down Syndrome has brought to my life is realizing that judgement often times comes from ignorance.

People judge that which they do not know.

By educating ourselves, listening to people bias free and keeping an open mind we accept things that are different. We gain perspective and embrace the things that we had no prior knowledge about. Human beings have a great deal to teach us, but we must be receptive and open to the lesson they offer (even though we might not agree with their thoughts or opinions on the subject.)

I hope that reading about Hazel helps you to accept her differences and celebrate her victories, just as you would with any other child. I also hope that her message helps readers to shift prior assumptions or perspectives of those whose live with Down Syndrome. Please continue to educate or advocate any chance you get!!!

That's so "Retarded"

This is going to be rough to read...please don't leave me. Hear me out and know that I have said the R-word. I am not judging you. I am simply trying to continue in my mission to advocate and raise awareness for Down Syndrome. Also, if you notice that this message does bother you, I assume you are one of the people who say it. I KNOW you are good people, just please think about what you are saying.

Look, I know you aren't referring to my daughter when you say the word "retard" or "retarded" so you don't need to be defensive.

I know that it's a habit.

It's happens to be ingrained in our vocabulary as an acceptable word. I don't know what happened or when it became mainstream to categorize, stereotype and use this word to describe something or someone that seems "stupid."

I mean...I tell people that my daughter has DS and they still use the word (like in the same paragraph of conversation). Honestly, I know you aren't referring specifically to my girl but someone, some day might.

Put yourself in my shoes.

Hazel hears this term being used, maybe not referring to her, and comes home from school and asks me what it means. What do I say? How do I answer? How do I protect her from being offended, hurt, becoming insecure, learning that others think that something is "wrong" with her, or worse she learns or believes that she is LESS than someone else. I'm not trying to be dramatic, but imagine that your kid is called like the worst, most offensive, name that is directly related to some characteristic that they actually possess. It's a little different than just some innocent name calling, right?

Remember as well that it's one thing that kids say it, but another thing entirely when an adult says it. You should know better, right?

The major problem that I have is that if you are here - on Chasing Hazel - reading this, chances are that you probably try your best to not say the R-word. If you do happen to say it, you are probably very conscious of the fact that you said it and realize that you could have chosen a different word.

That is, LITERALLY, all I ask. That you think about it, consider why you chose that particular word and maybe try to bring attention to the fact that it could be very offensive to someone who might not be considered to be as "intelligent" as another person based on the simple fact that they have an extra chromosome.

Moving forward, please don't feel guilt about what has or hasn't been said in the past, and just simply try to choose a different adjective to describe something. There really are so many other more intelligent ones to choose from.

Thanks for reading all the way down here and sticking with me. Know that if I hear you say the word I do not get angry or offended. I send you love and hope for that might be the last time you ever say that word.

Here are a few relevant posts that have been written to raise awareness about "ENDING THE WORD"

From Catharsis - "Just Another 'retarded' post"

Unfortunately, what people don’t realize is that intent and perception have nothing to do with one another.  One may not intend to hurt another with his choice of words, but the reality is others may perceive the words as hurtful because of the way they’re used.

To read more here is the link:

http://www.findcatharsis.com/2013/02/just-another-retarded-post/

From Shannonigans - "R is for Reason. Let's show we have some"

You can actually carry it and pass it to people and and not even know you're doing it. If we want to eradicate this word and the disease that it is leached onto, we have to make sure our childrens' comfort zones and social circles expand well beyond that which they see in a mirror. We have to make sure that they know other children, ones who aren't abled as they are, ones who aren't colored as they are, ones who don't dress or eat or pray or talk as they do.

Click the link to read more:

http://networkedblogs.com/IYz7T

Happy "END THE WORD DAY!"

PT & OT 9-12months (for Hazel)

First, I MUST share this video. It's the John McGivney Awareness Video, the facility where Hazel's therapists work. LOVE!!!  

Click here if having trouble viewing 

Amazing, right?

Ok...moving on...

This post is a medley of old and new(ish) Physical Therapy (PT) and Occupational Therapy (OT). I am working on a new post of activities from 12 months and up.

YIKES!!! Time fly's...Hazel grows and then we start new activities.

Hazel started to do these activities when she was 9 months. She is still working on some and has mastered others. As with all of my PT and OT posts, these activities have been approved by Hazel's therapists for Hazel, please check with a therapist in your local community before trying any of these activities with your children.

Occupational Therapy

1. In & Out

Hazel is working on putting objects in a bowl and taking them out. We use any big bowl available. I think maybe a metal one would be better so that when she drops something in, it makes a louder noise. Sometimes when I am feeling brave, we use a huge metal pot (side note: holy it's loud!!!) Any little toys work to drop in, links, cubes, pegs, balls. Hazel often has a hard time hearing anything drop in because she is constantly talking and babbling while playing. What is that saying - "you can't talk and listen simultaneously" - wait...did I just make that up? Oh, either way, you know....

She takes toys out of her bin, not so much put them back in. That's my job. I think she just wants to make sure my position as maid is secure. She's so kind and thoughtful.

2. Drinking/Eating

We are always working on eating and drinking. Hazel practices drinking out of a cup and a sippy-cup everyday. We try to encourage self-feeding by giving her pieces that she can pick up herself and put into her mouth. Her pincer grasp is not finessed enough for her to pick up really little objects like Cheerios, but she does well with penne noodles, crackers, bread and bananas (to name a few). Poor girl still has no teeth, so taking bites is difficult. When she gets the pieces into her mouth, she can't bite a piece off. Frustrating!

3. Rings

Put them on. Take them off. Put them on. Take them off. Put them on...

So that's that one.

Oops...that's cheating! You can't just dump them all, Hazel!!!

Oh yes...bang them together is another game she likes to play.

Physical Therapy

(these activities are not all we do, just some)

1. Weight Bearing on Arms

This one is a precursor to crawling. Here is one of the positions that works for getting her ready to push herself up in a 4 point. It is also encouraging her to weight bare on her arms. We try to get her to go from one side to the other. I find it easier if you hold a toy out for her to see, however, it feels like I need another hand to support her and hold the toy. You have to find what works for you.

When I move the toy in front of her, she follows along with it and sits looking forward and then I drag it to the other side and she leans to reach it. It's a tricky one!!! This was also great for getting her comfortable with putting herself in the sitting position. She would push herself back into a sit.

She would often shift her weight and would be in a 4 point stance for a couple of seconds, which was great to get her used to the crawling position.

2. High Kneel

This was my favourite PT activity (now she does it all the time on her own while she's playing)

It is easy and efficient for mommies and very effective in teaching backing in to a sit. It is also perfect for strengthening her arms by encouraging her to weight bare on them for a extended periods (by this I mean about a minute...maybe more if she was really into the toy that day). When backing into a sit she just pushes off the toy with her arms, leans to the side and goes down.

I would often switch up the tools we used to get her into a high kneel. Here she is leaning on a pillow or nursing pillow that is on top of the foam piece we have. Works perfect. Sometimes I would put her mirror in front of her so that she would stay there and talk to herself for a while.

At some point, she started going into this position and rocking. Crawl prep...

3. Crawling

Turns out this is the best PT there is. So, we just encourage her in which ever way motivates her that day to crawl around the house. Under the advisement of her therapist, we are not working on walking with Hazel. She is gaining so much strength in her arms, legs and core by crawling that we are just content to keep her doing that.

Speech Therapy

1. READ! READ! READ!

Lots and lots of reading. The same books over and over. We make sounds of animals, we point to the text. We start again...

Girlfriend is obsessed with books. She will sit forever with me and read. I LOVE IT!!!

Sometimes, she can't decide, speech or OT??? Decisions...

  

We have since added a bunch of new activities to our daily routine. I will share in a later post. Hope this helps to give some ideas!

Happy Days...

Hindsight

(I have had this written for a while, for some reason, it was hard to part with)

If I knew then what I know now...

Celebrating and reflecting on our year of growth, both hers physically and ours mentally, has been emotional. We are the same people we always were, but the lens we see through now create a vision much different than what has been seen in the past.

We see hope, joy and endless possibilities for us all.

We have been active agents in observing how one little baby can conquer so much. We have redefined beauty in our lives and embraced difference in all that it offers. We have accepted our challenge as parents and have never felt more fulfilled to have been given the opportunity to truly abandon all that was familiar. Both in terms of becoming new parents (cause that's hard enough) and also in recognizing that Down Syndrome is just that, an extra chromosome that happens to be part of our baby's genes.

Whatever...we got this!!!

 

(rock our world indeed)

We have made it a priority to steer clear of Baby Center milestones and just celebrate what IS. We find solace in the fact that Hazel will do all the things she is supposed to, in her own time. Just as all children do, when they are ready.

 

That is not to say that we don't work with our girl, support her and provide her with every opportunity there is for her to succeed. It's just that we do it with ease and at her pace. Just as any other parent, we have a deep desire and a vested interest in helping her to grow and be happy.

We will do almost anything to see this smiling face...

The pictures of this time around her heart surgery are difficult to see, but they are a perfect reminder that our girl is a fighter. She makes us so proud everyday.

She comes out on top.

She surprises everyone with her will and determination to meet milestones with grace and contentment.

There is NOTHING more beautiful than these almond shaped eyes. All the time - everyday - they put butterflies in my stomach.

She is silly, fun, stubborn, ambitious, expressive, happy and sometimes mad (if you can believe it - she yells a lot...seriously it can be rather offensive).

She has grown so much in 1 year. WE have grown so much in 1 year. I was excited about the future the moment we stepped foot into our home with a new baby girl.  She has delivered in every category. At this point, I have no words for what the future might bring. I am almost giddy about it.

Waiting so long for her to join us is not lost on us. We still have a hard time believing that she is ours. We still appreciate every moment of her life. I look in on her every night before I sleep. I am so overjoyed that she will be there in the morning when I wake, and every morning, with a smile on her face ready for a new day.

It has been quite a year. So many challenges, so many battles. Yet at the same time, I have never experienced such strength, love, pride, joy and PEACE. Most importantly - PEACE.

My wish for all of you....to find PEACE. I find it here, with her.

I can't wait to see what is in store over the next year. I know our learning and growing as people, as a family, has just begun.

If I knew then what I know now...

I would have been beside myself with excitement about the future. I would not have been as scared and worried about the challenges that may have awaited us (although part of me still is). I would have started to compartmentalize the overwhelming amount of pride that I have for my girl (sometimes I feel like I am going to explode with it). I would have prepared myself to receive love in a way that is unconditional and pure. And I would have been ready to surrender to the all-consuming LOVE that I have for my girl.

You know what they say about hindsight...

Love & Peace

Visting young minds...at the U

There are some photos. They aren't great but, at the very least, they prove we were there. We very much enjoyed our experience as guest speakers in this class at the University of Windsor. It was a great platform for us to further raise awareness and educate others about people with Down Syndrome. Now...I will tell you all what I told them, a disclaimer of sorts (I believe there were a few disclaimers before the chat started):

I am by no means an expert on Down Syndrome, I am only an expert on Hazel. We set forth to share information that could be helpful to those who are interested in learning more about DS. This information is solely based on our personal experiences with Hazel, and what we have learned so far.

The students were very interested to hear about some of the challenges Hazel has had to face with her health. After elaborating on Duodenal Atresia and her VSD, SHOCKED is a more accurate description of some of the facial expressions I saw as I scanned the crowd.

We went on to discuss the milestones that she has mastered and the ones she is working on next. More importantly, we talked about their futures. The future doctors, occupational therapists, physiotherapists, nurses, teachers and where ever else the wind may blow for these students. We tried our best to give an accurate description of what we expect as parents in any of these fields when dealing with a baby that has special needs.

We tried to create an environment of empathy and compassion, hope and positivity. All qualities that are important to me as Hazel’s mom. These are all qualities that Hazel’s therapists have. We went through some specifics about Hazel’s therapy.

We tried to foster thinking “outside-the-box” and being “open-minded”, when assessing a child that is a little different. Not all children with DS are the same and accomplish the same things at the same time. Just as with any child.

We cautioned the consumption of negative information about DS that can be found on the Internet. I tried to give some positive, helpful resources to help them to educate themselves and others.

I explained OUR role in the DS world – to ADVOCATE and EDUCATE and ultimately, aid in societal ACCEPTANCE!!!

I have to share 1 part of the presentation here with you all. You are all such faithful, loyal, accepting supporters of Hazel.  You will SO get this about her…

(this is actually on the PowerPoint presentation)

So…Is our girl WEAK?

After facing:

• Down Syndrome
• Surgery at 28 hours old
• Failure to thrive
• Congestive heart failure
• Open heart surgery at 5 months old

Low muscle tone maybe…but WEAK is not in her genes!!!

Thank you so much Professor Martindale for providing and allowing the opportunity to celebrate our daughter and educate those that may just be part of her successes in the future.

Grateful for this experience,

Enjoy your Monday

How about a Group Hug...

Here's a Group Hug for Family Day from Hazel's cousins. I think Group Hug Apparel is at the Devonshire Mall today. Be sure to get your t-shirts and e-mail us pics to post on the blog.

E-mail to chasinghazel27@gmail.com with subject line Group Hug.

Would love to post any of you who want to raise awareness and support those with an extra chromosome!!!

Enjoy your families today!!!

First Group Hug

YAY!!! Thank you Amy, from Unwind Massage Therapy, for sending in the first picture of Andrew's t-shirt in action.

Be sure to send me a picture of your Group Hug Apparel t-shirts and I will post it on the blog.

Love this local community support!!!

Group Hug Apparel

Do you have your Group Hug Apparel t-shirt yet?

It was such a pleasure to meet Andrew and his mom, Karen. They were selling t-shirts to raise money for a little girl in need of a heart transplant. Hazel instantly fell in love with Andrew. She immediately outstretched her arms to him and was trying to kiss him on the mouth. It was pretty cute.

Their booth was set up at Colasanti's, a local Tropical Garden. So we went out to get our Group Hug Apparel ON... (literally - we put it on while we were there).

Part of Andrew's inspiration to sell t-shirts is to help "sick kids." Andrew knows what it's like to have a heart surgery or two and wants to help kids in any way that he can. He says that it is "important to help people."

This video tells a little bit of their story, including a history of why they started Group Hug Apparel. Every time I watch the part where Karen says that she is proud of Andrew, tears well up in my eyes. It is an overwhelming feeling to know that your child can accomplish so much, even though the odds may seem stacked against them. You make us all proud, Andrew!!!

Also, if you have a Group Hug shirt and would like to send me a picture of you wearing it, I would love to post it on the blog. You can send it to chasinghazel27@gmail.com, with the subject line "Group Hug". Also, I know Andrew always wants to see where his shirts ended up. Feel free to jump over to his Facebook page and "like" it and share your pics with him.

Congratulations Andrew on all your accomplishments!!!

Click here if having trouble viewing 

Embracing difference is so empowering.

Acceptance & Peace...

Little N3lla's Triple Crown

I wanted to share something with my Chasing Hazel family. If you have been reading a while, you might remember my mentioning Kelle Hampton (once or twice, or three times - whatever don't judge me). She has been a huge influence in the Down Syndrome community since the birth of her daughter Nella. Her charisma and passion for raising awareness for individuals with Down Syndrome is admirable.

If you have not yet visited her blog, wait until you have some time, grab a coffee (or whiskey tea - whatever- I won't judge you) and enjoy.

For now, Nella is trying to raise money for the National Down Syndrome Society.

Every year for her birthday, Kelle celebrates by reaching out to her readers and asking them to support the cause. Over the past 2 years, they have raised over $200, 000. This year they are at it again with a new goal. They would like to have a grand total of $300,000. Anything helps!!!

Click HERE to find out more about how you can help support...

N3lla's Triple Crown

Nellas triple crown from ETST on Vimeo. 

Gratitude & Peace