Gearing Up for WDSD 2016

World Down Syndrome Day 2016 is almost here!!!!!! This was us from last year...

We are SUPER excited this year about our efforts to make the day the BEST it can possibly be out in the community. It is partially the reason why this blog space has been so quiet the last little while. Trust me, just because it's quiet here doesn't mean that I am not pounding the pavement everyday to advocate and educate our community about DS. And a willing community they are!

WDSD exists to celebrate individuals with Down syndrome by choosing activities that show support and awareness to those individuals. Rocking Socks has become and easy, attainable and VERY visual way to demonstrate this support around the globe. We are seeking to share what it IS to have Down syndrome - something to be celebrated. We are advocating for the inclusion, respect and understanding that individuals with Down syndrome have a great deal to offer their communities. This day occurs on the 21st day of the 3rd month because we celebrate the 3rd copy of the 21st chromosome which is what makes Down syndrome. To read more about WDSD visit: https://worlddownsyndromeday.org/

Over the last 4 years, World Down Syndrome Day has become one of our absolute favourite days of all time. It's a day where the WORLD celebrates individuals with DS. Social media channels explode with support, love and stories of accomplishments. Families share their children and all the pride and love they have brought into their lives. We here at Chasing Hazel are no different.

So far the community support we have received is outstanding. It literally brought me to tears yesterday. My heart is swelling daily as new people message me and ask how they can be a part of the day. We have firm commitments from 8 grade schools - who have pretty much made it a school wide event to rock socks and share a fact a day about DS. A local high school who will also be rocking some socks. The St. Clair College who has taken us in and adopted us as their own. They are planning on being a HUGE part of our day. More details to follow. Over the weekend the number only grew with more schools and other local organizations reaching out wanting to be a part of the celebration. So as of now there are over 20 different places committed to Rocking Socks for WDSD.

We would be honoured if you would...

Rock Your Socks

with us on this very special day. Be sure to tag your pics so I can share them all over the place!!!!!

#chasinghazelwdsd2016

Leave a comment on this post or email me if you are interested in joining the celebration!!!

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. 

NDSAW #5 - Ruby's Rainbow

Have you heard of Ruby's Rainbow?

Ok well watch this video and then we can discuss:

CLICK HERE TO WATCH VIDEO

Click link above if you are having trouble viewing the video :)

Ok so now you know how fantastic this organization is. Providing adults with Down syndrome scholarships and opportunities to go to college that may not have otherwise existed. In Liz's words, she feels she is providing them with an opportunity to "nourish their souls" I love everything about this.

The thought of Hazel finishing high school and having nothing else to look forward to or work towards is not an option in my mind. She WILL be a college student at one point in her life. All I can do as a parent is provide opportunities and open the doors. You will never hear me say that she "CAN'T" I am trying really hard to let her become the best person she can become. Sometimes that may be a little more difficult because society doesn't see her the way I do. Ruby's Rainbow is helping to change perspectives and expectations by giving individuals with Down syndrome an opportunity to attend college programs and become college grads.

The beauty of it all is that we GET to watch. We GET to see them succeed. We GET to be proud. And most importantly we GET to see change happen.

With every fist pumpin'-celebratory jumpin'-arm raisin'-tear sheddin' student that reads an acceptance letter or becomes a scholarship recipient the BAR IS RAISED.

People with Down syndrome are intelligent, capable, motivated and mostly EXCITED to be a part of the world. They know what they are up against and they go up against it anyway. They succeed and are grateful to have been given the opportunity. Let's try and make this the rule rather than the exception. Go to Ruby's Rainbow. See what you can do to help.

Thank you Liz who started Ruby's Rainbow. She is a charismatic woman who's heart is touching so many families.

Also, wanted to let you in on a little fundraiser going on where ALL proceeds are going towards Ruby's Rainbow:

Here is the website Reeve's Tee's that is hosting the fundraiser. Please check it out if you have a second. 

Thanks for you support everyone!!!!

NDSAW #4 - Brothers

Will, Hamilton, Cadman all live together in the same house. They are brothers!!!! This mama no doubt has her hands full, of cuteness!!!! I have been following this lovely family since they adopted their two youngest sons. Then I came to find out they had an older son, Will, with Down syndrome too. Love it!!!!

I happened across this post on IG during DSAM and thought I would share. This is straight from Amber's IG page @akdavis333. Head over and check this sweet family out, you won't want to miss out on these boysssssss!!!!

I love these words so much!!! Worthy indeed Amber. Thanks for sharing!!! 

NDSAW #3 - JAX

This little nugget Jax is such a handsome young lad. He makes me smile A LOT!!!

Him and his mommies are some of my favourite people in this community. They are hosting a fabulous fundraiser this week and ALL PROCEEDS GO TO THE CANADIAN NATIONAL DOWN SYNDROME SOCIETY. What an amazing and generous idea to support and advocate. Well done!!!

Please head over to their blog (link below) to find out how you can purchase one of Stephen Underhay's exclusive Canadian prints. You only have until the 7th. Check it out!!!! Here is the link to Steven Underhay's website.

http://www.stephenunderhay.com

Here is the link to their blog post for more details:

http://downwithjax.com/2015/11/01/drumroll-please/

Changing the Face of Beauty

There's this wonderful campaign going on right now called... 

Changing the Face of Beauty 

At the beginning of 2015, Katie Driscoll set out to find 15 companies willing to use models of all abilities in their advertising. She has now secured over 100 companies (Bellalulubaby is one of them!!). This campaign is gaining a great deal of attention and momentum. I could not be more proud of this woman that I have never met. It is probably one of my favourite movements right now. This needed to happen, it was necessary. Our community needs to see how diverse we are as a society. How we all live together, stand together.

Creating inclusion in advertising only makes sense as one of the next steps to create awareness, acceptance and equality in our society.

Please hop over to Katie's Facebook page HERE and website HERE to read more about this beautiful campaign and see how you can get involved. This pic was reposted from Katie's, Changing the Face of Beauty IG page. The caption for this photo reads:

My inspiration. The face that reminds me that being included in our visual world matters. Katie

Here is the link to the article I wrote that expresses why I believe it is important to shift our focus to INCLUSION in all aspects of advertising. Please head over to the CTFOB blog to read my thoughts:

http://changingthefaceofbeauty.org/a-guest-post-from-chasing-hazel/

It's the right time. It's the right place. Let's do it!

Thank YOU Katie for dreaming this up and making it happen. You are an inspiration to me and words will never amount to the appreciation and gratitude I have. I know you are making this world a better place for my daughters. You are creating an opportunity to change feelings of inadequacy into to feelings of acceptance and LOVE. 

 Amen to raising a child with special needs in the year 2015. 

Please go to Changing the Face of Beauty Facebook page and website to see how you can help be a part of this movement. 

Occupational Therapy - What's in the Bin?

How about we start off 2015 with an old (really old) Occupational Therapy post? I promise to return with a full update and account of the girls Christmas.  

 

As Hazel grows and masters old skills, we change the activities we do in Occupational Therapy. Here are some of the toys that are in our OT bin right now.

Hazel really does well when sitting to do these activities are part of her regular routine. We try about 3-4 days a week minimum. Sometimes we sit for 5 minutes, some times for 20. Sometimes we do all the activities, sometimes we do one. I really try to make it a fun experience for both of us. That being said, sometimes I take her out of the chair immediately after I put her in. You gotta know when to fold em'.

Hope this helps!!! Any DS parents out there that wish to share their ideas, I would love to hear them!!! Post a comment or email me!!!!

Gift Guide for Therapy Toys

Seeing that it's Christmas time, I thought I would put together a gift guide. I can't believe it's well into December already!!! We, fortunately, are done our holiday shopping. I'm feeling very thankful to have this month to spend just enjoying our family and friends. May your cup runneth over this holiday season. And I probably mean with eggnog and rum, but love and peace works too.  

For those of you who still have some last minute shopping to do, I thought I would try to help. Hope these toys will work for someone on your list. Here are some of the toys that we have been using during therapy time with Hazel. These are mostly Occupational Therapy toys.

, 

Buying toys I always look for 3 qualities.

1. Developmental skills

2. Longevity

3. Fun

Keep this list in mind when buying for the kiddos on your list this year. These toys are not only great for children with Down syndrome but any child. These are skills all children will need to practice and toys that they will enjoy!!!

Lacing Beads

We started with the wooden spools and the big beads in the first set. Then we moved to the string lacing set. I did take some electrical tape and reinforce one end of the string to make it easier and more firm for Hazel to grasp.

Play doh

So many things you can do with this inexpensive toy. Also, make your own and it's even cheaper. We hide little objects or animals in the Play doh and Hazel digs them out.

Puzzles

Large peg puzzles are a great way to start and move onto the smaller pegs. We also use the puzzles that the doors open (hide and seek barn) and the latches board.

Lift Flap Books

ANY BOOK with lift flaps will do. Helps children to learn to isolate their finger to manipulate objects.

Duplo Lego Sets/Mega Blocks

Love these for pulling apart, building, and pretending.

Blocks

These are the best!!! Can be used for building, stacking, spelling. These will be around for a while.

Colouring/Crafts

We try to get Hazel to do this often. Practice with grasping the markers, working on her grip.

Sensory Play

We have not yet attempted this sensory activity yet. Hoping to get this from Santa!!! It was recommended by our Occupational Therapist as a great sensory play toy.

Pretend Play

Baby dolls, kitchen set, cupcake making set, the list can go on. Use whatever toys your child is interested in. We use a lot of Little People toys.

Slots

We use so SO many different toys for this skill. I feel like it takes a multitude of toys to master this skill. Each toy offering a different way to turn your wrist and put the item in the slot. We use buttons in a peanut butter jar, coins in a small plastic container, the fisher price pig, and on and on.

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.

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!

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.

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.

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.

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.

Hand Strengthening - OT & Down Syndrome

Down Syndrome Awareness Month continues. I thought I would share an OT post. Hope it's helpful. We do Occupational Therapy (OT) with our daughter Hazel. Click here and here to find out more about what OT is and what we do here in our home. It's important to note that I AM NOT AN OCCUPATIONAL THERAPIST. I am just a mom who works closely with one and listens to everything she has to say like it's the bible. I strongly encourage you to speak to your child's OT before trying any of these activities to make sure they are a good fit for your child.

 

Sometimes children with Down Syndrome experience low muscle tone. One area this can affect is their hands, making it difficult for them to manipulate objects.

I always hesitate to add an age to these posts because every child develops individually. We have been doing this one for a while and will continue to do so as she grows. As she gets stronger, I will find more challenging objects for her to pull apart.

2 OT activities we do that target Hand/Finger Strengthening.

1. Pull Apart Toys

Here are a couple of things we use. We also use MEGA blocks, bristol blocks, snap beads and pretty much anything that links together. Some are easy to pull apart and some a little more challenging.

2. Play doh

I hide objects in the play doh and she digs through to find it. She also likes the feeling of it so she squeezes it and manipulates it with her hands.

There ya go!!! Too easy.

Down Syndrome Awareness Month

 

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.

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.

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!!!

"Up About Down" Buddy Walk

 

It was a beautiful weekend for a walk. The sun was shining and smiles were not in short supply.

Our local Down syndrome community, Up About Down, got together this past weekend for their annual "Walk" in support of Down syndrome. Up About Down:

• is committed to enhancing the quality of life for those with Down syndrome and their families
• raises money for the local association so that they can provide events and activities for individuals in the community that have Down syndrome or the support system of those with DS
• raises awareness about DS in the community

To read more about Up About Down click here to visit their website. Also, you can check out the Up About Down Facebook page and give it a "like" so you can follow along with future events honouring Down syndrome.

This was our 1st year attending. The event was a huge success!!! The walk raised over $10,000 for Up About Down. We are really looking forward to being a part of this community in the years to come.

A very special THANK YOU to our friends and family who came out and walked with Hazel. I have said this a million times but it takes a village and we truly appreciate you coming out to stand with us. Y'all only make us stronger. Thank you!!!

3-21World Down Syndrome Day 2014

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.

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.

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

THANK YOU!!!

Occupational Therapy - What's in the bin?

  When Hazel and I do OT (Occupational Therapy) I like to have her sit in her high chair so that she gets used to more of a structured activity time. We are kind of always doing OT when we play just by doing puzzles, snap beads, pull apart activities, eating, dressing, reading etc. But I find that it's easier to introduce new skills and activities when her and I can both focus on one thing at a time. Once she has mastered the skill I take the toy and put it in "gen-pop" (general population with the rest of the toys).

Also, I try to give her as many different ways of doing the same thing that her therapist and I can think of (most of these ideas are her therapists. I just try to find things around the house that reinforce the concepts). For instance, building blocks. She has several different shapes, sizes and colours that she can practice with. Specifically, mega-blocks, bristol blocks, counting blocks, ABC blocks etc.

Here is what is in our OT bin at the moment:

We work on all these activities together. We try everyday but more realistically its probably 3 to 4 times a week.

We use the containers to put the toy into that we are done with. It's important to offer her a place for them so that she doesn't throw them everywhere. OT can be very messy....Yikes!!!

The little people toys are for teaching animal sounds or to use while we read books with the corresponding animal. Girlfriend likes props!

Play-doh for hand strengthening and putting pegs into. Sometimes we sing songs and make it into different shapes. For example, "Patty Cake". We roll it, pat it, and so on.

The textured surface for colouring just makes it more interesting because of the sounds when she colours.

As always I encourage you to share "what's in your bin?" I love to hear your ideas, thoughts, comments, questions. Please leave a comment!!!

Down Syndrome - Our Top 10 Therapy Toys/Tools

I have always been interested to hear what types of therapy activities parents are doing with their kids with Down syndrome. There is such a vast array of options out there and I love to learn and experiment with Hazel. I like to have ideas to discuss with her PT (physiotherapist), OT (occupational therapist) and SLP (speech and language pathologist). One thing I have learned raising a child with special needs is that it truly does take a village. This post was inspired by my love for learning new activities to try and help my girl reach her full potential. I'm hoping this gives you some ideas to bring to your next therapy session to find out if these activities might work for your children.

Please feel free to share your ideas and activities in the comments of this post. I would love to hear from you.

 

1. Big Ol' Piece of Foam (PT & OT)

A piece of very firm foam that's about 2 feet x 2.5 feet. We used this for almost everything (kneeling, sitting, weight baring on arms, reaching, playing and standing). I know this could be tricky to get but ask around I am sure you will find it somewhere.

2. Mirror (PT & Speech)

We used this to encourage Hazel to sit, balance, reach, and TALK TALK TALK. She loves looking at herself and hearing her voice.

3. Baby Signing Time (Speech)

These DVDs are great for introducing common signs to your toddler. I find that as long as I use them in her day-to-day routines she learns them in context. They are an excellent tool to teach me the signs so I can use them to communicate with her.

4. Flap Books (OT & Speech)

5. Large Peg Puzzles (OT)

6. Pegs (OT)

7. Blocks (OT)

Stacking anything is the idea. It doesn't have to be blocks but this is what we use. We also use nesting cups, books etc.

8. Piggy Bank (OT)

Anything that has a slot and something to put into the slot is a winner here.

9. Push Toy (PT)

We used this toy for the longest time. We started with reaching, then kneeling, then standing, then walking. It really is a great investment.

10. Exercise Gym (PT)

We used this for standing and shifting weight on each leg. Then we used it to get her to cruise around the outside when she was bigger. Also, we used it for pulling to stand. We used this toy for a long time so I think it's definitely worth the investment.

So these are 10 of our favourite tools to use in therapy. To read more about what else we do check out my older posts here.

Also, don't forget to take a second to share your ideas or activities that you do with your children in the comments of this post. Also, feel free to ask any questions you may have!

Wishing you all success in your current and future therapy ventures!

3 Speech Therapy Activities - Down Syndrome

One of the therapies we do with Hazel is Speech Therapy. Sometimes children with Down syndrome experience challenges with their speech development. In order for us to help Hazel to be prepared to face these challenges, early intervention with speech therapy has been our biggest tool. 

Down syndrome aside, I think that it is important to talk to your kids as much as possible, especially during daytime routines. Repetition and being able to anticipate routines helps kids to understand what is about to happen and eventually comprehend the language being spoken. We talk to Hazel constantly. I feel like a sports announcer at home a lot of the time. Announcing every activity before we do it.

A couple of examples…

• “Let’s go and eat Hazel. Are you hungry?” She signs, “eat” or says “mmmmmmmm” (or both)

• “Would you like to read a book?” She signs and says, “book”

• “Would you like to get up?” She says “up”

I really just try talking to my girl all the time and exposing her to the language so that she can start to understand and try to imitate. It's no different than what most of you do in your homes.

 

1. Imitation

When we started this, I tried to get her to imitate as many sounds as possible. Examples would be, “ma ma”, “bah bah”, “na na”, “ta ta” and so on through the alphabet. She tried her best to repeat after me and I would clap and tell her she was a good girl no mater what sound came out of her mouth. As long as she tried I was happy.

We also worked on attaching a meaning to that sound. Some examples:

• Bah - Bye Bye
• Baa – Bubbles
• Na Na – Nonna or Nana
• All Dah – All done

We still work on imitation, but now I try to get her to repeat full words. She tries and I clap and make a huge deal. It really is quite the production. The more I repeat, the more she tries to say it back. I also try to sync it to signs whenever possible.

2. Reading

Read. Read. Read. All day, every day.

I feel like I read the same books over and over and OVER. Hazel has definitely decided which ones are her favourite and she will sit all day and listen. Now she is starting to make sounds that she remembers as we go. She sits and reads books to herself ALL DAY. Turning the pages and pointing to pictures and words. I ADORE watching her.

For example:

• We do alphabet sounds with some books, and I try to get her to repeat.
• While we are reading books we practice animal sounds.
• I try and get her to point to different things on the page (Where’s the ball? Where’s the pool? Etc.)

3. Singing songs and signing along

This is by far Hazel’s absolute favourite thing to do. I sing just about any song I can think of and just make up signs to it. Anything will do as long as I am consistent. While I sing I pause for a moment to let her try and show me what's next. In the beginning it really helped her to focus and try to come up with the next action. She knows so many now and loves it. It is really adorable to watch too!!!

Some examples of songs are:

• Itsy Bitsy Spider
• Wheels on the Bus
• Five Little Ducks
• Row Row Row Your Boat
• Twinkle Twinkle

She knows each song so well now she's trying to sing along. Also, she is able to communicate to me which song she wants me to sing to her. This really has been a great speech tool, in that she has learned to communicate and sign along. Try it with your kids, it's the cutest!!!

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