Dear Me,

In those first few days after I gave birth, I cried oceans of tears. I was devasted. I felt lost. I didn’t know where to put myself in my motherhood, and the special baby that I was given challenged my beliefs, my ideals, and brought me to my knees in my faith.

I look back on that time now and feel a tremendous amount of guilt. I look back on that time now and realize I wasted so much time and energy worrying about things that didn’t even matter.

I thought about my last post for Down Syndrome Consciousness Month for a long time and while many of my co-parents in our organization ended the month with a prayer of thanksgiving and with gratitude for the DSAPI for bringing us all together, I felt that I wanted to end the month long celebration with a letter to myself.

I would give this letter to myself on that very first morning after Gelli was born. It was the morning that Nino and I decided to name our daughter Evangelina. 

Evangeline means God’s Gift. 

Dear Me,

Dry your eyes. Take a breath. Your daughter will be fine. In fact, in three years time, you will be amazed at just how far she has come. Do me a favor? Hug your husband. He’s holding it all together for you and for the kids. When you got married, you knew there might be challenging times in your marriage. This is one of those times. While you question your faith, he is staying the course and towing the line. He will give you the time you need to adjust to the diagnosis of Down Syndrome and the idea of what that will entail for your family. Just remember, to give him some time and space too. There might be times when he will need you to be strong for him as well. That’s what your marriage has always been about because together, you make a great team.

I can see that you are overwhelmed. Your mind is racing, your eyes are swollen, and you are all over the place. Stop thinking about Gia’s future wedding and how her sister will stand as her maid of honor. For now, take it one day at a time. You’ll like it much better this way. Actually, one of the gifts your new daughter will give you is the ability to be absolutely present and “in the moment.” This is something you have been working on with your yoga and your reiki, but you have yet to master it…you will master being in the moment and when you do, you will realize it is because of that extra chromosome that you are so worried about, right now.

It’s time to find your breath and go back to your center. Take a step back and try to see the big picture. The big picture includes a beautiful new baby girl who is actually, the perfect fit for your family. In the beginning you will worry a lot. It’s in your nature. I know. You come from a long line of worriers…but, what I want you to see is the beauty in the gift you have been given. They say that parents of children with special needs experience a huge shift in perspective…if you are ready for that shift, then STOP what you are doing right now, AND LISTEN.

You are wasting your time and your tears. Don’t over indulge, and don’t overthink. Trust that He had a plan when He allowed your daughter chose you. Trust that He will provide ways and means for you to grow through this experience and become the mother you never knew you could be. It will be an adjustment, but what you will see is that you will meet other parents just like you. You will learn from them. You will share laughter, tears, joys, and triumphs for small milestones that you took for granted before. You will pray with these very same parents for the continued health of their own angels. You will walk with them…side by side…because you already know that there is strength in numbers.

Your daughter will teach you things. She will open your eyes to see how strong your own mother is. Your mother will support you silently. She will be a source of strength for you, and you will love her even more, for how she will support you and how she will love her new granddaughter. Your baby will also show you the depth of love your sister can have for her very special god child. And your friends? You’ll figure out who your true friends are…because your daughter will show you. You will finally understand that you only need a few TRUE friends to be happy and to feel supported.

You absolutely must listen to your friend, Dale. Remember her words when you called her from your hospital bed, just hours after you gave birth. 

“Honey, look at the tremendous gift you have been given. She is perfect. She is pure. You must only look at her soul, and you will know that God has given you the most wonderful gift of life through her.”

Go out and buy the book that she told you about. The one written by Dale Evans Rogers… 

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It will change you. You will see things clearly after you read this book. You won’t worry as much, and you will realize that although you feel you have been brought to your knees in your faith, it’s because of all of your questions, that God gave you exactly what you needed to strengthen your faith more than you ever thought previously possible. 

You will find your way in all of this. Your daughter will help you. She will make you a better person…just like each of your other children before her…

But don’t wait too long to settle into your new motherhood…because it will fit you perfectly. 

Promise.

Love you,

Me.

Early Intervention Seminar

For those of you have been paying attention, I have been posting every day here on the blog, something that is relevant to Down Syndrome for the entire month of February. I’m not gonna lie. It’s really difficult to come up with a relevant post EVERY DAY for 28 days in a row, but with the help of my friends I managed to do it.

I have been lucky enough to have some very wonderful people who were willing to share parts of themselves for my cause. My “guest post” tab will be growing and I’m honored that so many people put themselves out here on Momma ‘N Manila…not just for me and Gelli, but for all of you as well. 

I hope that I have been able to share at little bit of my parenting journey with Gelli, and that it has increased your understanding of what Down Syndrome is about. I know that with understanding comes acceptance, and with acceptance comes inclusion. And in the end…I just want Gelli to be included…

Sharing my journey with all of you would not be complete without sharing the organizations which have provided wonderful opportunities for me to grow in my parenting and love and support of Gellibean as well.

Once such organization is DSAPI. After I had searched the internet for the books I wanted to purchase to help me parent my daughter, I skimmed the blogs of mothers who had children with Down Syndrome. After I skimmed the blogs of parents abroad, I searched for an organization here in the Philippines. Through the DSAPI website, I found their Facebook group. I scanned the very active Facebook group for ideas of what to expect in my joureny and stories that I felt I could relate to. 

At the time, Gelli was probably no more than a month or two old. I saw that there was an Early Intervention Seminar coming up on the calendar. As an educator, I knew and understood the value of Early Intervention for children with special needs, so attending this seminar was vital for Evangelina to get a head start on reaching her goals and milestones as she would grow. 

Truth: Nino didn’t see the need in attending such a seminar when our daughter would be less than three months old at the time of the seminar. 

Nino supported me in those first few weeks that I found our daughter’s diagnosis so devastating. He did not falter in his love nor his faith. But, in that moment, I knew that he might not have been ready to join a group which I knew would be a valuable resource to us as parents. I remember telling him that he didn’t have to go, if he didn’t want to…but that I was firm on attending and if he wasn’t interested in attending, that I would attend for both of us and our daughter because I felt it was important.

Of course he saw the value in attending the seminar with me after we talked about it some more. He accompanied me despite his reservations and apprehensions.

Attending the Early Intervention Seminar was the first step in putting Gelli on a program that would be the foundation of what was to come. The talks, movies, slideshows, and sharing of other parents, gave me a concrete place to start with my daughter so that I could provide experiences and opportunities for her to reach her full potential. The therapists, doctors, and parents, provided answers to questions we both had. They paved the way for Nino and I to explore different ways we could help our daughter achieve.

I remember EIS for the first friends we made in DSAPI…Tony, Agnes, Elmer, and Adette. I knew that I would have people in my corner forever, when I met Shereen and Elaine, as we shared our stories in the small group break outs. I remember the hope I had in my heart when I saw sweet Adeline Lois standing with her parents Luis and Sani; giving testament as to why early intervention is so important and how it helped Addy in reaching her own milestones.

And for all of that…I am grateful.

The first EIS of the year will be taking place very soon. If you are a new parent to a child with Down Syndrome (or you know someone who is), here in the Philippines, and you can make it to the seminar, I am sure you will come away with the very same tools that I did. EIS will equip you in raising your child and creating an understanding that will provide for many aha moments in your parenting, that will guide you on the new journey you are embarking on.

Feel free to contact the DSAPI office for more information on how to register for the seminar.

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Click on the photo for a link to the event page :-)

The Down Syndrome Association of the Philippines, Inc. (DSAPI) is a non-stock, non-profit organization, founded in 1991 by a group of dedicated and committed parents and concerned physicians. It aims to offer support to families who have a child with Down Syndrome and to initiate, develop, promote, encourage and support programs and projects concerning Down Syndrome. DSAPI believes that the initial reactions of new parents that typically bear disappointment, sorrow, fear, guilt, confusion and anger can be replaced with positive attitudes of warmth, love, understanding and hope.

DOWN SYNDROME ASSOCIATION OF THE PHILS., INC. (DSAPI)
2nd Floor, 6372 Agrifina Building
Camia corner Meleguas Streets
Guadalupe Viejo, Makati City, 1211 (near Rockwell)
Contact Numbers: (63-2) 895-36-06 / Tel/Fax: (63-2) 895-96-42
E-mail: dsapi@hotmail.com
Yahoo Groups:http://groups.yahoo.com/group/dsapi/
Office Hours: Monday to Friday from 8:00AM – 6:00PM
Facebook:http://www.facebook.com/groups/53343128860/

Best Buddies Amazing Race

So our Best Buddies club has just finished up hosting their second event on campus.

I posted a photo stream of our first event here :-)

I’ve shared about what Best Buddies was about here :-)

But for those of you just tuning in it’s like this:

Best Buddies fosters inclusion and friendship by pairing typical kids with kids with IDD. 

What’s the Best Buddies mission?

To establish a global volunteer movement that creates opportunities for one-to-one friendships, integrated employment and leadership development for people with intellectual and developmental disabilities (IDD).

We do this through 8 different programs.

  • Middle School 
  • High School
  • College
  • Promoters
  • Citizens
  • e-buddies
  • Ambassadors
  • Jobs

In DLSZ we start our buddies as young as Grade 7 and continue all the way through Fourth Year. I am really pleased with the way our Best Buddies Club in DLSZ has developed. Students who want to be paired up will make the commitment to be with their buddy for a whole school year. Together with Ms. Mau and Ms. Juay, we pair students up according to their interests. 

The support from DLSZ has been incredible and often times, when I think about it…I get a little emotional. I can see that through the friendships the kids are forming now, with the support from the faculty, staff, and even Brother Bernie we are making the world a better place one friendship at a time.

Just check out these beautiful moments made possible by the magic of Best Buddies.

Thank you Mike and Millie from Lightworkz Photography for covering our event and always being so generous with your time and expertise.

Thank you Mike and Millie from Lightworkz Photography for covering our event and always being so generous with your time and expertise.

When the students arrived, they registered, and were assigned a team color.

When the students arrived, they registered, and were assigned a team color.

Thank you Gatorade for sponsoring our drinks and reusable water bottles!

Thank you Gatorade for sponsoring our drinks and reusable water bottles!

Before we got started on the challenges, we asked each of the teams to complete the questionnaires to get to know their buddy better.

Before we got started on the challenges, we asked each of the teams to complete the questionnaires to get to know their buddy better.

The DLSZ Best Buddies came up with questions that would help the Buddy pairs get to know one another better.

The DLSZ Best Buddies came up with questions that would help the Buddy pairs get to know one another better.

Station 1 Tasks the Buddies to find 3 printed Best Buddies Logos around the campus and take pictures together.

Station 1 Tasks the Buddies to find 3 printed Best Buddies Logos around the campus and take pictures together.

Challenge accepted and completed.

Challenge accepted and completed.

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Station 2 has the Buddies complete a series of tasks together on the playground. Photo Credit: Best Buddies Manila FB page

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Station 3 tasks the buddies to go Fishin' for a Mission.

Station 3 tasks the buddies to go Fishin’ for a Mission.

 

Buddies have to fish 5 magnetic fish out of the pool with their fishing poles and then put the Best Buddies Mission Statement in the correct order. 

Station 4. Build a Buddy.

Station 4. Build a Buddy.

Challenge accepted and completed.

Challenge accepted and completed.

Station 5 challenges the kids to use a plastic spoon and fill up their cup with marbles. 

Station 6 has the buddies revisit the questions that they answered earlier about each other by quizzing them on what they learned about their new friends. 

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Congratulations to Team Red for snagging First Place!

Congratulations to Team Red for snagging First Place!

Congratulations to Team White for taking home 2nd Place!

Congratulations to Team White for taking home 2nd Place!

Team Yellow took home 3rd Place.

Team Yellow took home 3rd Place.

Team Green took home 4th Place.

Team Green took home 4th Place.

Team Blue completed all the challenges together closing out and collecting all six flags to clean up in 5th Place.

Team Blue completed all the challenges together closing out and collecting all six flags to clean up in 5th Place.

Congratulations to all of our Buddies who finished our Challenges and came out of them knowing their buddies better!

Congratulations to all of our Buddies who completed the Amazing Race!

Thank you to Planet Sports for sponsoring our FIRST, SECOND, AND THIRD place prizes. Thank you to Gatorade for providing our drinks and refreshments during our challenges. Thank you to Ms. Chie of Zaide for always making sure our buddies are fed well after our activities.

Thank you Jack and Jill for providing the snacks for all the buddies to take home in their loot bags.

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Thank you Mike from Lightworkz Photography for documenting our entire activity, and Millie from Not Your Ordinary Mum for all your help.

But more than that…Thank you to the entire guidance department for supporting our activities, putting them together creatively, and genuinely caring about the kids who we are bringing together for the awareness and inclusion of people with Intellectual and Developmental Disabilities.

Thank you Ms. Marianne, Ms

Thank you. Without all of your support, none of this would be possible. Namaste.

 

 

Weekend Activities in Metro Manila

The weekends are usually the time we set aside for our family to bond! This weekend is so jam packed with so many different activities not just for the us to attend as a family and walk around leisurely, eat, and shop…but also for me as a mom and a parent.

Check out these places to go to and things to learn all here in the Metro.

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I always find the science parties that are put together by Mind Museum interesting. This party is the perfect theme for the month of LOVE.

I love bringing the kids to The Mind Museum, and I love that they are a supporter of Best Buddies :-) Thank you Mind Museum!

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Click on the photo to be taken to Mom Pop Up on Facebook to learn more about what vendors will be there!

Rone has put together a bunch of different vendors which make moms lives easier. My favorites on this list? Two Tots and Anthill Fabrics!

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I love that quite a few of the vendors in this Mom Pop Up have causes behind their businesses.

Remember Coach Pia and the SoMoms #BetterMe sessions? Here is your chance to attend a Better Me Session on your own! 

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Click on the photo to be brought to The One Core Facebook Page to learn more about this workshop and how you can attend for a minimal fee.

We never stop learning. Even if I have kids who can achieve good grades and balance sports and extra curricular activities with studying, I can always pick up new tips and tricks from other educators.

Brain Gain Conference Poster

Of all the activities this weekend, I think this is the one that piques my interest the most…the teacher in me wants to hear what these experts can share…most especially for me to apply with Gellibean.

Pregnant? Trying? Have a newborn? Breastfeeding? Be sure to attend the talk by Abbie Yabot at the Bumps, Babies, and Beyond Fair by Mommy Mundo. Abbie was my lactation consultant for Gellibean and I am so grateful for her and the service she provides. 

Bumps, Babies & Beyond

Mommy Mundo has always put together a people and vendors to help Mommas like me. From her very first bazaar years ago when Diego was less than 2 years old she has been the go to source for mommas whether they are planning to get pregnant, already pregnant or holding your baby already.

Summer is fast approaching. Have you mapped out your kids’ schedules yet? Check out Expo Kid to find ways to keep the kids busy, learning, and productive.

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 And let’s not forget the wine….

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Because we all know…after attending all these events with the whole family…we will need wine…LOTS of wine… hahahahahaha.

Breast Feeding your child with Down Syndrome

I miss nursing Gelli. 

I thought it would be a good idea to write about breastfeeding Gelli because I know it’s not always easy to commit to nursing if you don’t have the support system around you to encourage you on your path to giving your baby the best.

I just met Tania through a lunch that another Mommy invited me to with other moms of kids with Down Syndrome. The lunch itself was really quick because I was in a hurry that day, but I was able to make some new friends and I enjoy the chit chat (and support) in our Viber group. Tani shared that she just wrote about her experience nursing Yago and I asked her if she wouldn’t mind sharing it with my readers as well.

Thank you Tania for sharing part of your journey with us here.

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My breastfeeding journey started in 2008 when I gave birth to my first child, Sabina. As a new mom, I was both elated and overwhelmed and although my mind was staunchly made up to breast feed, it fell under my long list of “to learn’s”. After all I was a newbie mom who had so much information and advise to weed through.

At that time, I was referred to another breastfeeding coach who had her own set of beliefs, practices and methods. Not knowing any better I obediently followed though it was no walk in the park. There were daily struggles filled with stress. I often tried racing out the door sans baby so that I could step foot in the mall, into a coffee shop, restaurant…somewhere, anywhere I could swing a little “me time” only to be called back because the baby was crying and needed more milk. The essence and beauty of breast feeding unfortunately fell out of focus during those times. Looking back, I was simply overwhelmed and Sabina and I had not found our rhythm yet.

Pressure really set in when the milk supplies in the freezer diminished faster than it could be replenished. By that time, self-doubt was nipping at my heels.   After my daughter’s first birthday, I remember telling myself that I made it, that I had met my goal to breast feed to 12 months. It was quite an accomplishment for me, especially since it seemed that I was about to fail many times. With all that I learned, I vowed next time, the experience would be sweeter.

Two years later, in 2010, I gave birth to my second child, Yago. Luckily enough, my friend, Laura referred Zeny and I saw her at home immediately after I was discharged from the hospital. Breast feeding has its own unique challenges but I was faced with an additional challenge. My son, Yago, was born with Down syndrome and we only found out after he was born. Naturally, my husband and I read up on the condition, as we both knew very little about it. My maternal instincts drew me towards subject matters such as feeding a newborn with Down syndrome. As helpful as the Internet may be, it can also be frightening to uncover the multitude of issues, challenges, pitfalls and various outcomes that can be faced but I decided to stand firm and try at all cost. The thought of a weak suck, feeding tubes, respiratory, gastrointestinal and cardiac issues were enough to keep me paralyzed with fear.

During my first session with Zeny, we really hit it off and I felt comfortable and at ease from the very start. When I introduced Yago and told her about my past experiences with another lactation coach, I never once mentioned that he was a special child. Perhaps I was trying to find “normalcy” in things by carrying on as usual; or perhaps I was not ready to share. Looking back, I really appreciate that Zeny was sensitive to both my capabilities as well as Yago’s. Even if I never mentioned Down syndrome, I knew she knew he was special.

Shortly after we met, Zeny invited Yago and I to be part of a breast feeding video that would be launched in honor of World Breast Feeding Day. Naturally, we obliged. Yago and I would be demonstrating the various breast feeding positions for a new born. At first I was a little hesitant. Like most babies with Down syndrome, Yago was hypotonic, which means that his muscles are more relaxed than usual so that he feels “floppy” when you pick up or hold him. But throughout the shoot, Zeny reassured me that we were doing just fine. I also knew some of the other mom’s at the shoot and at first, I felt as if everyone was staring at Yago because of his condition only later to find out that they were admiring him. After all Yago was a baby and who doesn’t enjoy looking at babies? In the end, being part of the video helped me the most. It enabled me to free myself of all sorts of uncertainty about having a special child, to shed misconceptions I had about breast feeding a special child, and most importantly, it helped me to turn outward towards the world once again.

Lactation sessions with Zeny continued until Yago was over 6 months. Although I only direct fed 20% of the time and pumped 80% of the time, Zeny helped to empower me every step of the way. She assured me that Yago and I were doing great together even if he fell asleep at the breast most of the time. Due to the rigorous pumping schedule, my milk supply was at its best. Unlike with Sabina when I felt like I was only producing just enough, we had to purchase a small freezer just to store Yago’s milk. It was definitely a happy purchase, which any mom would be more than glad to do!

In between sessions, I would often call or text Zeny asking for advice and guidance. If there is anything I learned from her, it would most likely be: When in doubt, uncomfortable or on the verge of pain, COLD COMPRESS. This would have become every mom’s mantra to survive happy, productive and long term breast feeding. I’m sure all of Zeny’s clients would attest to this.

Time passed quickly and I continued to breast feed Yago until he was 10 months old. At that point, my husband and I made the decision to start to wean Yago in preparation to have another baby.

Two years later, in 2012, I gave birth to my third child, Paco. Again, immediately after delivery, I saw Zeny and I instantly felt relieved knowing that someone I trusted would get me up to speed on breast feeding again. Paco was a big baby so we worked on different positions that were comfortable for us and by the second session, we were doing a beautiful dance together. This time, I am feeding 90% direct and pumping only 10% of the time and although I am not as dependent on Zeny as I was previously, she is still a source of strength, inspiration and knowledge when it comes to nursing babies and I am lucky to have her.

Two years from now, who knows if I’ll be ready to give birth to my fourth child. But in case I am, it looks like Zeny and I willl see a lot more of each other.

Tania and Yago

Tania Son-Vaca
Mommy, Housewife and Pilates Instructor

To learn more about Zeny visit her website www.breastfeedingjourneys.com

Best Buddies Bingo at DLSZ

Last January, the DLSZ Best Buddies Chapter hosted our very first Best Buddies Bingo Pizza Party on the DLSZ campus. We invited students from the Integrated Movement Academy to join us in an afternoon of bingo, pizza, prizes, snacks and fun.

Setting up for our buddies before they arrive

Setting up for our buddies before they arrive was a breeze with these kids, who are so willing to give of themselves and their time.

The kids signed in, received their loot bags from Nestle, and filled out a raffle stub.

The kids signed in, received their loot bags from Nestle, and filled out a raffle stub.

Because we are a new club, I asked the kids to all contribute one item that they would like to win if they won a raffle prize.

Because we are a new club, I asked the kids to all contribute one item that they would like to win if they won a raffle prize.

Jessica Malca, one of our Best Buddies Ambassadors was excited to get in the game with our Bingo challenge!

Jessica Malca, one of our Best Buddies Ambassadors, was excited to get in the game with our Bingo challenge!

Our event wouldn't have been considered a success without the help of our very generous sponsors. Thank you Chef Anna and Raymond from Pink Wasabi!

Our event wouldn’t have been considered a success without the help of our very generous sponsors. Thank you Chef Anna and Raymond from Pink Wasabi!

It took a little while for the kids to warm up to each other but once they got moving...all was well.

It took a little while for the kids to warm up to each other but once they got moving…all was well.

Thank you to Vico Cham for gracing our Bingo event as well! Vico is another Best Buddies Ambassador as well.

Thank you to Vico Cham for gracing our Bingo event as well! Vico is also a Best Buddies Philippines Ambassador.

Each buddy pair that won a Bingo game received a set of ALL DAY passes to Mind Museum and a Buffet lunch or dinner FOR TWO from Acacia Hotel.

Each buddy pair that won a Bingo game received a set of ALL DAY passes to Mind Museum and a Buffet lunch or dinner FOR TWO from Acacia Hotel.

Thanks Tita K, for hosting our event!  

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Our event was a great success. I think you would agree by the sincerity in these smiles…

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Thank you to our event sponsors:

Mind Museum

Twitter: @themindmuseum

Instagram: @themindmuseum

Acacia Hotel

Twitter: @acaciahotels

Instagram: @acaciahotels

Pink Wasabi

Twitter: @mypinkwasabi

Instagram: @pink.wasabi

Ms. Chie from Zaide 

Nestle Philippines and Milo Philippines

Thank you Mike and Millie from MRLightworkz Photography! All the photos in this post were from them :-)

Happy Walk 2015

So this happened today… 

 

Lolo, Lola, & Ninang are present for #TeamGellibean! #downsyndrome #downsyndromeawareness

A photo posted by Michelle Aventajado (@mommanmanila) on

We started with a quick breakfast in McDo with the fam bam. Then we proceeded to SM NORTH EDSA The Block. Every year we have attended The Happy Walk it has been hosted by SM Cares at They Sky Dome.

We registered all our guests, picked up Gelli's loot bags and said what's up to the lady that makes the magic happen behind the scenes in DSAPI.

We registered all our guests, picked up Gelli’s loot bags and said what’s up to the lady that makes the magic happen behind the scenes in DSAPI.

And then we figured we would go around and take a peak inside The Dome so that I could also snap some pics.

Team Adeline was fully present. We hope Adeline Lois gets better soon!

Team Adeline was fully present. We hope Adeline Lois gets better soon!

Even Nino was excited to see some familiar faces.

Even Nino was excited to see some familiar faces.

It’s so hard for me to balance things when I attend these events because I’m always torn. I want to go around and take photos of everyone…and I want to be in the moment for my Gellibean. So I asked Nino to keep an eye on Gellibean while I snapped some photos…

I love this shot. I wonder how the selfie came out.

I love this shot. I wonder how the selfie came out.

After we said hello to some of our friends, we went back to where the mass was being held.

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President of DSAPI, Elmer Lapena shares a little about our organization, and a little bit about our kids too.

Did I mention that Gellibean was a poster girl this year? #soproud

Did I mention that Gellibean was a poster girl this year? #soproud

Confession: I was thinking of telling my bro in law and sis in law that we should do the wave when Jeremy came by with the Go-Pro, but then I remembered we were still finishing up mass.

Confession: I was thinking of telling my bro in law and sis in law that we should do the wave when Jeremy came by with the Go-Pro, but then I remembered we were still finishing up mass.

After mass we have to get Gellibean ready by changing her shirt so we can all walk together.

After mass we have to get Gellibean ready by changing her shirt so we can all walk together.

AND TEAM GELLIBEAN HAS GROWN BY A FEW MEMBERS...

AND TEAM GELLIBEAN HAS GROWN BY A FEW MEMBERS…

We met lots of other families and I asked them if I could snap some photos of them too...I love the balloon idea that Andie's parents had for him.

We met lots of other families and I asked them if I could snap some photos of them too…I love the balloon idea that Andie’s parents had for him.

Every year SM Cares is so generous with our Happy Walk. I think this will be our last year in The Dome tho...our numbers are growing every year!!!

Every year SM Cares is so generous with our Happy Walk. I think this will be our last year in The Dome tho…our numbers are growing every year!!!

It's so nice to run into other friends who are supporting our cause. Mona and Carl are from the Autism Society Philippines showing their support for our lil ones.

It’s so nice to run into other friends who are supporting our cause. Mona and her son, Carl are from the Autism Society Philippines showing their support for our lil ones.

Note to self...I think next year we can also incorporate a banner...Nicely done Formoso Family!

Note to self…I think next year we can also incorporate a banner…Nicely done Formoso Family!

And it's always good to run into old friends.

And it’s always good to run into old friends.

Remember Lolet and her daughter, Camille?  They came with their own Team Camille this year!

Remember Lolet and her daughter, Camille? They came with their own Team Camille this year!

Thanks Kaye and Alexa for joining Team Gellibean!

Thanks Kaye and Alexa for joining Team Gellibean!

Every year, this DSAPI celebration marks the (almost) end of our month long campaign for awareness. Representatives from DSAPI are all over the metro with interviews, write ups, and tv appearances to educate the public about our children.  The Happy Walk is where we share our happiness and love not just for our children but for our whole community. It’s where we count our blessings, thank our sponsors, and rock that extra chromosome. We really know how to have fun doing it…    

 

#Gellibean jamming to the sounds of the Air Force Marching Band. #PAF #downsyndrome #downsyndromeawareness #HappyWalk2015

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Don’t ya think?

Guest Post Occupational Therapy with Teacher Pat P.2

I’m so happy that Teacher Pat was willing to share her knowledge of how she works with her clients/students  and even adapt some of the therapies she uses so that Moms and Dads can try them at home with their own kids.

In this guest post, Teacher Pat will  share ways she works on gross motor skills with Gellibean, and simple ways anyone can try these same therapies at home too. Teacher Pat’s original post had a plethora of information. Because I thought it best to break up the information into two separate posts, I am including her introduction to her original piece here again.

As an occupational therapist, I help my clients by making it easier for them to perform their occupations. I teach my clients the skills needed to complete a task through practice and repetition. In this case, occupation does not only translate as work to be paid for or a job, rather, occupation is defined as the activities which are important for my clients. For children, primary occupations are play, school, and self-care activities (taking a bath, dressing up, eating, toileting, etc).

I have been working with Gelli for a long time now, and I am so proud of her achievements. I have seen her improve, and seeing that smile every Monday morning makes my day.

During our sessions we target the following skills needed for her occupation:

Gross Motor (Whole Body) Skills:

  • My number one choice for gross motor activity is crawling: crawling on all-4s or tummy crawling. Crawling uses both sides of the body (left and right) which in turn, improves the connection between the left and right sides of the brain which is important in development and learning.
  • Jumping in place and forward. Give needed assistance. What I do first is have them bend their knees for easier and higher jump.
  • Sitting on lap or exercise ball then tilting them in different directions: left, right, backward, and forward. This will help improve trunk muscles for postural control.
  • Sit ups to reach for a toy. This also improves core and trunk muscles.

After working with all of Gelli’s therapists, I have learned that yes, it is important to crawl before you can walk, and that you should know how to walk before you can run. In the greater scheme of thing, typical kids might not have such an issue if some of these developmental milestones are somehow skipped or not totally mastered. But, this is why we have such a great team of therapists who come together to help Gelli be the best she can be. 

We are grateful for Teacher Pat, Teacher Geline, and Teacher Danica. It’s because of their patience, understanding, and guidance that we can see Gelli is growing up to be the strong, confident, talkative little girl that we know and love.

 

 

Go, run! #gellibean even waves mid stride to say good bye.

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Guest Post: Occupational Therapy with Teacher Pat

Gelli’s first occupational therapist was Teacher Raina.

When Teacher Raina told us she was moving to Vietnam, my heart sank. She eased us into the idea of her moving. She explained her decision to move awhile before her scheduled date of departure. (It’s like she already knew that we might have some problems with change.) And when her date drew near, she began showing up for a tandem therapy session with Teacher Pat. 

One of Gelli's first therapy sessions with Teacher Raina.

One of Gelli’s first therapy sessions with Teacher Raina. Gelli first therapy that we focused on was Occupational Therapy. Physical and Speech Therapy followed later.

Teacher Pat is firm. But I believe all of Gelli’s therapists have to be firm. They set the groundwork for so much of what we do with Gelli on a daily basis. In fact, whenever we have a new yaya for Gelli start to work with us, I make them sit in on at least two sessions with each of Gelli’s therapists. Everyone has to be on the same page in taking care of her, setting limits, and use of language. We don’t want baby girl to be confused.

I have asked all of Gelli’s therapists to put together some helpful hints of ways to using the same techniques she uses during Gelli’s therapy sessions, in case some of my readers would like to try implementing these same therapies at home. After all, we know that our kids are always learning, and we can play with them in a way where we can make therapy fun too.

Teacher Pat has passed on quite a bit of information and I will try and break it up into a way that makes sense for us. I figured that I would break up what she wrote into two parts. We even talked about her contributing a monthly piece where she can explain what goals we are working on, and ways to reach those goals at home and through play.

Thanks Teach!

As an occupational therapist, I help my clients by making it easier for them to perform their occupations. I teach my clients the skills needed to complete a task through practice and repetition. In this case, occupation does not only translate as work to be paid for or a job, rather, occupation is defined as the activities which are important for my clients. For children, primary occupations are play, school, and self-care activities (taking a bath, dressing up, eating, toileting, etc).

I have been working with Gelli for a long time now, and I am so proud of her achievements. I have seen her improve, and seeing that smile every Monday morning makes my day.

During our sessions we target the following skills needed for her occupation:

  • Behavior (including attention span)
    • Following instructions
    • Persevering through challenging tasks without having tantrums
    • Fine Motor Skills
    • Cognition such as understanding, thinking, memory, naming concepts, and recallFine motor (hand) skills such as strengthening her fingers and manipulating and grasping objects of different sizes

Here are some easy tips and activities that I do with Gelli to improve the skills I’ve mentioned above that moms can do at home too:

Behavior

  • Limit distractions and clutter in the area.
  • Play with one toy at a time. Have your child pack away if they want to play with another toy.
  • Encourage your child to persevere and finish given activities. When tantrums occur, give needed assistance and at least make him do 1 or 2 more rounds before packing away.
  • Be generous with simple praises such as high-fives, “good job,” “well done,” and even just a big smile to encourage them to do it again.
  • Exchange free play with some games or activities that parents choose may it be obstacle course, flashcards, playing with puzzles, etc as long as there are things or steps that the child should follow or listen to.

(Side not from Michelle: As a teacher one of the most valuable lessons I learned was the fact that you can always empower a student, or in this case your child by giving her two choices. Of course, the two choices are what you would like them to choose anyway.)

For any activity, (even eating) I always give two choices.

For any activity, (even eating) I always give two choices. Teacher Pat believes in this philosophy, as well. 

Fine Motor (Hand) Skills

  • Give activities that will use your child’s fingers and exercise the hand muscles. Scrolling or pressing the iPad does not count. Children should really hold and manipulate objects to strengthen those fingers (plus develop cognition, imagination, and play skills).
  • Stringing beads.
    • Bigger objects are easier to work with then progress to smaller objects when your child can hold bigger objects with ease.
    • If you have a spare shoelace you can make a knot at the end, and buy bigger beads in the toy store to start.
    • Make a necklace, bracelet, etc. that your child will find fun. With imagination, those beads can also transform to a car, train, or a snake. 
    • This also improves hand skills as well as hand-eye coordination as your child will have to look at the consecutive holes to lace the string.

(Side note from Michelle:  I have found painted wooden beads complete with string and net sack from a vendor at the St. James Bazaar. She is known for Montessori based learning toys.)

  •  Toy stores offer lacing toys but you can make one at home by punching holes through a folder and having your child lace through it.
  • I usually incorporate this in conjunction with a task where my students would have to open the clothespin to get a flashcard. You can do that at home too or just let them put it anywhere (sides of boxes, string, bedsheet, etc).  Hint:  Choose a clothespin that is not too hard to open so as your child can do it by themselves.

 

 

#toddler #therapy #tip Keep old perfume bottles for the little girl to play with. #finemotorskills

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  • Put together toys such as lego or pop-locks.
  • Play Doh-You can purchase a ready made kit with items like a molder or cutter. But you can also just get one plastic container, have a jumbo pencil and use the pencil as a rolling pin. Make your child copy you by rolling, pressing, and pinching the Play Doh. You can also flatten the Play Doh and us it as a paper so that your child ill enjoy pre-writing tasks and this also strengthens pencil grip. Draw anything you want on it: lines, shapes, flower, etc. and make your child copy it or trace over it. You can also bury small coins in the Play Doh for your child to find as it involves pinching and pulling the clay.

(Side note from Teacher Pat: Can I just say I love using Play Doh for my students? I enjoy it as much as they do. There are so many things you can do with Play Doh!) 

Store bought packs of play dough have lots of options.

Cognition:

  • Lessen choices first to make it easier for your child and to lessen visual distractions.
  • Memory games. An easier activity that you can do is point to a picture that you want your child to get then have him run to the opposite side of the room and get the picture that you ask.
  • Introduce names of objects, colors, and shapes as much as you can.

 

Check back tomorrow for part two of Teacher Pat’s Guest Post. She really put together a ton of information, tricks and tips for all of you. I figured breaking up the post into two parts would make it less overwhelming for all of us.

 

Welcome to Holland

As part of my collection of books that I first ordered when Gellibean was born, I was sure to order The Road Map to Holland, by Jennifer Graf Groneberg. When I searched for books on Down Syndrome on Amazon, this is one of the first memoirs that will come up. I didn’t have anything to go on at that time, so I ordered all the top picks and top search options from Mr. Google.

Road Map to Holland was one of the first memoirs written by a mom to a child with Down Syndrome. It was published in 2009 and shares the author’s struggles of not just with having a child with DS, but also with the fact that she had three children under the age of four. Parenting is never easy and Jennifer shares the good and the bad with a myriad of details that many mothers can relate to when going thru their days. 

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Keep in mind that Road Map to Holland was groundbreaking in the sense that she not only shared her disappointment with her son’s diagnosis, she worked her way through it having the revelations and shifts in perspective that many of us can relate to as “Special Mothers.” Previously, many of the books that parents could find for help with Down Syndrome, were clinical and not written from a parents perspective.

I wanted to take the time to share the poem by Emily Perl Kingsley which is the inspiration for the title of Jennifer’s book. It’s not a tear jerker like “The Special Mother,” by Erma Bombeck, but it is quite valuable in helping us put things into perspective. Holland is a beautiful country after all, isn’t it?

WELCOME TO HOLLAND

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this……

When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”

“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”

And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss.

But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.

by
Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved