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.  

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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.

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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'.

 

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lacingbeadsOT

TurncapOT

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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.

 

Giftguidetherapy1,
 

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.

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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.

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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.

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Lift Flap Books

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

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Duplo Lego Sets/Mega Blocks

Love these for pulling apart, building, and pretending.

buildabakeryMEGA BRANDS INC. - New Fall 2012 Products

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Blocks

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

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Colouring/Crafts

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

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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.

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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.

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littlepeoplebus littlepeoplefarm

 

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.

 

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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.

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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!

 

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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.

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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.

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

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

 

 

Hazel LOVE

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

HazelLove

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

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

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.

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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.

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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.

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There ya go!!! Too easy.

 

Down Syndrome Awareness Month

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

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

CHANGING.

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

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

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

When you celebrate her accomplishments with us...

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

YOU ARE INVITING KNOWLEDGE ABOUT DOWN SYNDROME INTO YOUR HEART.

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

Oh - I hope A LOT!!!

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

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

I do it for Hazel.

DSAM

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

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

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

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

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

Happy Friday!

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

 

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

I do, I swear!

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

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

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

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

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

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

Let's work together!!!!

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

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

 

"Up About Down" Buddy Walk

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

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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.

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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!!!

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3-21World Down Syndrome Day 2014

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

 

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

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

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

She likes...

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

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

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

Then there is a day like today.

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PicMonkey Collage2

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

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

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If having trouble viewing click here
 

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

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THANK YOU!!!

 

Occupational Therapy - What's in the bin?

Otpinterest
  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:

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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.

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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.

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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.

mirror

 

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.

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4. Flap Books (OT & Speech)

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5. Large Peg Puzzles (OT)

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6. Pegs (OT)

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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.

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8. Piggy Bank (OT)

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

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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.

pushtoy

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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.

 

exerexer

 

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.

 

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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.

Melissa Riggio Shares Her Thoughts

resource
 

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!

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

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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.

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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...

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  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!!!

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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?"

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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.

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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.

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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.

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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.

 

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

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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.  

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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.

 

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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.

 

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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.

 

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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!!!

 

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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.

 

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

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

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