Three's a Charm

New BLOG!

2011-06-27T11:56:00.000-07:00

Please come join us over at our NEW blog...it's about time we realized we are now a family of 6!!!!

Promise to have some fun updates this week!

Annual Check-up!

2011-06-14T23:33:00.000-07:00

It was time for our annual check-up and we are happy to report that we are growing and thriving! Only 3 pounds separates the two of us (despite being almost exactly one year apart!) so we are often mistaken for twins. We LOVE each other so very much and get into constant trouble around the house! Thank goodness one of us is in school almost every day otherwise mama would be going crazy by now chasing and cleaning up after the two of us.

Mama says she PROMISES to be better about posting! Life sure is busy with 4 rambunctious and very busy kiddos! Having three boys ages 8, 6 and 3 is a handful and add one feisty 2 year old princess and well...we have a FULL house.

Check back in again soon! So many new things going on with the Sanchez Six (yes...mama and papa round us out to 6 silly Sanchez family members!) Stay tuned for a NEW blog that combines Saving Sofia and Three's a Charm...it's about time!

So Far So Good!

2011-04-11T20:32:00.000-07:00

Here is Joaquin moments before surgery. He was in SUCH a good mood and as charming as ever. FULL of grins and giggles. Surgery went smooth and quick. Both eyes were done and now we let it heal and wait and see how successful it was. They sent him home without any special medication and no patches or guards so I'm a nervous wreck about it. The only precaution is for 2 weeks we need to keep him away from playground sand and putting his head underwater. His eyes are really swollen, sensitive and totally red. I can barely look at his eyes without it totally hurting me and making my stomach turn. We know that this was a procedure totally recommended by his doctor/eye surgeon and that there are many benefits to doing it but there is a teeny tiny part of me that feels like I am messing with my boy and his beautiful eyes. They are one of my most favorite things about him. His beautiful eyes are the windows to his soul and I just don't want to do anything to hurt him or those precious peepers. I can't tell yet if the surgery worked. They look pretty good but it's really deceiving with all the red on the eye. We will know in 6 weeks. We have a quick post op appointment tomorrow morning and then in six weeks we go back to evaluate the results.

Thank you everyone in blogging land, text, facebook, phone and in person for being so supportive. We love you all. Now back to snuggling my boy and helping him heal!

Eye Surgery on Monday

2011-04-08T14:56:00.000-07:00

Joaquin is scheduled to have eye surgery on Monday and check in is at 6:15am at UC Davis Medical Center. We are hoping and praying that the surgery to correct his strabismus is successful and that he has no complications and that this will be the only surgery for his eyes that he'll ever need.

We welcome prayers and good thoughts leading up to the surgery and on the day of surgery! We hope he heals quickly and that his eyes are straight therefore giving him better depth perception. We have every confidence in his eye doctor/surgeon. It is an outpatient procedure and he will be able to participate immediately in all his activities except for playgrounds with sand and underwater activities for 2 weeks.

PRAYING all goes well!

Happy World Down Syndrome Day! 3-21-11

2011-03-20T19:44:00.000-07:00

All these beautiful children I am happy to know and love...the babes of the Sacramento Area Sisterhood. This is a preview to a DSIA 2012 Calendar fundraiser and photos were taken by the talented team at Benton Photography. Enjoy!

Celebrate that special extra chromosome!

My Favorite Face

2011-03-08T20:56:00.000-08:00

Photo taken by Michelle Marrone (dear friend and photographer)

This face and this smile makes my world. This is Joaquin in his true form...giving love. Oh how blessed we are to have him in our lives.

Our Little School Boy

2011-03-08T20:24:00.000-08:00

Joaquin has been in preschool now for a little less than a month and I thought I would share an update. He is THRIVING in school and I don't know if it's his age now or his going to school or what it is but he is soaking up the world around him. He is obsessed with letters, numbers, picture cards, manipulative puzzles, throwing/catching/kicking balls, and anything musical.

He will recite the ABC's on his own with very little to no prompting. He grabs magnetic letters off the fridge and 8 out of 10 times he accurately identifies the letter. He wants to count things all the time. He LOVES books and asks to read books more than any other activity. He is using scissors on his own. He is potty training. He is exploding with his language. He is so HAPPY.

He now asks for the bus when he wakes up and wants to put his backpack on and get out the door to wait for the big yellow school bus. He gets on and just SMILES now. He loves it. We blow kisses to each other and it's the cutest, sweetest goodbye I have ever experienced with any of my children.

I have no doubt that this is the absolute BEST thing for Joaquin. I'm so grateful for our school system and for the teachers and for the therapists, friends, and family that have helped prepare Joaquin for this next BIG step in his growth and development and independence.

I found out today that he is starting OT and PT at school every week in addition to the ST he gets twice a week and all of these therapies will be "pushed in" to the classroom setting. Our team would like to do another IEP in May to prepare and revise his plan for the Fall. Joaquin will be starting full immersion preschool this Fall with all the other incoming neighborhood 3 year olds two days a week at our home school down the street. On the other days, he will continue to take the bus to attend his Special Day Program where he will receive all his intensive therapies to continue to help him thrive in "typical" preschool. So all in all, I feel like I've hit the lottery with this team of teachers and therapists and professionals. They care....they really truly care and love my child. We are so blessed. I'm going to stay positive and believe that there is every chance that our experience will continue to be positive. I know it's a long and difficult and challenging road ahead but I feel like we've got a terrific start!

The Wheels on the Bus

2011-02-08T13:32:00.000-08:00

And he's off...to preschool. Oh my goodness, a mixture of emotions bottled up inside. Pride, excitement, hope, joy, nervousness, sadness, fear. All of them at once bubbling up to the surface. Proud of my big boy. Excited for this next new step. Hope for a wonderful first experience with school. Joy at seeing his smiling face. Nervous about letting go. Sad seeing him get worried. Fear for all the unknowns.

We talked all morning about the bus and sang one of his favorite songs "The Wheels on the Bus". We got his backpack ready with some pull ups and wipes. We got a nice big brunch inside his belly and got dressed for the morning. The bus arrived promptly at 11:00 and as the wheels went round and round toward us Joaquin yelled out "BUS!" My voiced cracked a bit and tears welled up inside my eyes but I kept it together. I think it helped that I had to rush to pick up Mateo at 11:10 from Kindergarten and had Sofia to take care at the same time so those things served as great distractions.

Hector followed the school bus to pick up two other preschoolers and then followed the bus the 1.5 miles to Joaquin's school (he felt like a stalker!) I was able to get there in time to see Joaquin being walked to class with one of the main teachers Miss Kelly (who is a DOLL!!!) and she had plenty of hugs and snuggles to give him when they greeted. It was only when he saw me that he gave us his sad face so it was then that I realized I needed to let go and let him grow from this experience without me distracting him.

I pick him up at 2:20pm so we'll see how it went. We decided not to go into class with him because everytime Joaquin saw us he got a little sad. PRAYING he has fun today and that he enjoys school and that the classmates and teachers love him as much as we do.

I'll try to upload the video of him getting on the bus later! SUPER windy day here today. He almost blew over a few times with the backpack on his back! My teeny tiny sprite.

THREE!!!

2011-02-07T21:18:00.000-08:00

I'm THREE now and I'm starting preschool tomorrow. A yellow schoolbus is going to pick me up and I'm going to take my backpack and spend three hours away from home with my new school family. I really have no idea what to expect but I know my mom and dad are really excited and a little nervous too!

Here are some pictures of me on my third birthday last week! I had so much fun but in the middle of the party I came down with a big fever and didn't feel very well. It was still so much fun spending my birthday at a gymnastics center with 31 of my buddies!

I'm a BIG boy now! Watch me grow and learn and soar! The sky is the limit for me!

Increasing Awareness...Powerful Stuff Here

2011-01-14T13:59:00.000-08:00

Tears are still in my eyes watching and listening to this awareness video done by Kelle Hampton.

Check it out HERE!

You'll see a little clip of both my sweet angels! Rock on Nella!!!

IEP Date is Set...Preschool Here We Come!

2011-01-13T18:53:00.000-08:00

Our IEP (Individualized Education Plan/Program)date is set and we are getting ready for it! February 1st at 9AM...the day before Joaquin turns 3!!! Way to cut it close!

We have visited the program we were most interested in and that has been recommended for him by the school district and it looks like a perfect fit right now. It's a special day program preschool that is therapy intensive and has teacher/student ratio or 1:2 right now! He will go 4 days a week for about 3 hours. They work on EVERYTHING from numbers, letters, phonics, speech, feeding self, potty training, fine motor, gross motor, socialization, handwriting without tears, colors, routines, EVERYTHING! They also spend a little time each day with the full inclusion preschool to observe and practice in that environment. The head teacher is AMAZING and ADORABLE...two prerequisites that all preschool teachers I think should have and it helps that she is young, energetic, motivated and highly educated. She has her teaching credential, early childhood education degree and a masters in special education. She runs the program with a great speech and language pathologist and then there is one more teacher's aid in the class. They will work on sensory issues, OT, PT, ST and some oral motor work. He may even take the BUS to and from preschool! WOW!

We have yet to see what more they may offer us and we do plan on asking for a few other things and we will continue to pay for private music therapy but I'm just thrilled with this next step! It's also perfect because we are starting mid-school year so we can reevaluate when the fall comes and see if he is ready for a few days in the full inclusion preschool next door. Joaquin has a few years of preschool ahead so we will work towards a goal of getting into a 5 day a week full inclusion preschool before Kindergarten!

Here is a short video of our littlest boy. And when I say little I mean tiny. VERY petite little boy. His sister is going to pass him up pretty soon!

Joaquin Being Cute!

I gave him a pre-birthday haircut today (all by myself!) so he'll be all set for preschool in February! He is such a sweet and funny little boy. He truly is the sunshine in our family!

Happy New Year!

2011-01-08T01:22:00.000-08:00

And what a year it has been!

Please consider visiting Kelle's blog at Enjoying the Small Things and see our sweet boy Joaquin and his darling sister Sofia as one of the MANY beautiful faces of Down syndrome.

Let's start the new year giving back...and in return giving a better future for all children blessed with a little extra chromosome and those GORGEOUS almond eyes.

Three Boys = TROUBLE!

2010-12-15T17:14:00.000-08:00

Eye Update

2010-12-09T22:11:00.000-08:00

We saw Joaquin's eye doctor again last week and received some good news. The patching of his "good" eye is working and she doesn't think he'll need eye surgery after all! WOW! Took me by surprise because she seemed to think it was the ONLY solution for so long.

She said his eyes are straightening on their own and that we should continue to patch his dominant eye 3 hours a day and then do a full eye evaluation in 3 months to see if maybe he needs glasses now.

So we will continue to monitor it closely and patch daily to help our little guy. It would be WONDERFUL not to do the surgery and to be able to fix it somewhat more naturally!

Trick or Treat?

2010-11-02T20:14:00.000-07:00

This was Joaquin's first year walking during Halloween and actually trick or treating! What a joy!

We had so much fun watching him walk up to all the houses and try and figure out just what he was doing there. Most of the time he had a pretty perplexed look on his face (if he wasn't grinning) and just overall seemed to love the freedom to walk all over the neighborhood. He tried to walk into a few people's houses here and there but he quickly caught on to putting his candy into his bag and saying/signing thank you and waving and saying goodbye.

Pretty darn cute!

Sofia stayed home for the actual trick or treating part and the big Super Mario brothers were off and running as soon as we said "GO!"

Saturday at the Park

2010-10-10T11:28:00.000-07:00

All four of our kiddos on the swing set at our neighborhood park!

Wordless Wednesday...Big Boys

2010-09-29T14:16:00.000-07:00

Those Eyes...Again!

2010-09-28T09:15:00.000-07:00

So....I'm needing my blogging family and friends to help me out a bit. Am I being overly sensitive? I think so...

I've noticed lately that I'm a bit more sensitive when people strike a "funny" face for photos and more often than not people love to cross their eyes and stick out their tongue to make this face. I realize lately that the face is somewhat the face of a person with Down syndrome or any other brain injured person. Joaquin obviously has a strabismus so his eyes are crossed most of the time and occasionally his tongue rests on his lower lip when he is overly tired or relaxed.

I realize people...adults and children...mean absolutely no harm in making this face but when I see the crossed eyes I just cringe a tiny bit thinking they are making fun of themselves and looking "silly" or "dumb" but they are doing this by making their face resemble the face of someone with a strabismus. Do you think this goes back to the whole "retard" thing....looking and acting "retarded" to poke fun at oneself.

Just a random thought for the day. Silly I know but just sharing some of the thoughts that I have. It's not like I expect people to stop crossing their eyes when they make a face for the camera or for fun, it's not that. It's just I wonder where that ever came from or started from. I've grown to love and adore my boy's little crossed eyes but yes, we will be doing the surgery to straighten them later this year and we'll see how successful the surgery is for cosmetic and medical reasons. Will having straight eyes help Joaquin to be more mainstreamed and less made fun of in the future? I don't know. Will it help people see beyond his disability if he doesn't "appear" to have DS or doesn't have the strabismus? I don't know. Does it bother me? I don't know. Will this bother Joaquin someday? I don't know.

I think I'm just having one of those overly sensitive days. I'll get over it...

Can I Have One?

2010-09-22T22:08:00.000-07:00

Down Syndrome in the Movies!

2010-09-16T08:17:00.000-07:00

The opportunities and possibilities for people with Down syndrome continue to increase. Here is an article and movie trailer where Evan Sneider, an actor who has DS, is one of the main characters. It looks like it's an intense drama, looking forward to seeing it!

Girlfriend

Tropical Storm Joaquin

2010-09-04T18:00:00.000-07:00

Joaquin is like a walking hurricane these days...into everything. He is so BUSY and so CURIOUS and so full of MISCHIEF! I've been trying so hard to keep up with our house (since we are still trying to sell it!) and every time I clean up one room, I go into the next and it's like a tornado hit. It happens all. day. long.

He is so inquisitive and wants to explore every inch of his environment and that's wonderful...it's just impossible to keep up with him!

Here he is getting caught in the act of something...

A Down Syndrome Disney

2010-08-17T10:29:00.000-07:00

We just returned from a quick celebration trip to Disneyland. We LOVE it there!

We have had the pleasure of going a couple times the last few years but about a little more than a year ago we took the boys (Joaquin's first trip to Disney) and we were so surprised not to see even one baby, child, teen or adult with DS our entire trip. And I was looking! I remember at the time wanting to see a familiar "face" at Disneyland.

I am happy to report that this trip was quite the opposite. So much so that by the end of the trip when we were in the lobby of our hotel and a teenage boy stopped to say hello and we saw that he too had DS, my mom and I were just laughing about it! We saw a few babies, several toddlers and kids, a TON of teenagers, and one adult woman with DS escorted by her niece. I also had the HUGE pleasure of meeting some of my SoCal sisters and blogging friends Denise, Cheri and Lisa and their amazing kiddos!

It seemed that everywhere we turned, we would see another family touched by DS. I was especially touched by one older teenage boy who was there with his family. I saw him kiss and hug his mom and grandma at least a dozen times in the 5-10 minutes I was watching them. I can totally see Joaquin being like this. He is SUCH a love bug. Then the other group that totally had us smiling was a group of about 5 teenage girls. They were there with their moms and the group of them have been friends since the girls were 2 years old and met through an Early Intervention program. They were celebrating their graduation from middle school and decided that Disneyland was the place to do that. The girls were a hoot and they loved Joaquin and Sofia. I had a great conversation with the moms too! In fact, two of the five girls were adopted by one of the moms. Amazing!

It was a LOVELY experience and so completely different from our last trip. This is how I imagined Disneyland to be...people from all backgrounds and abilities enjoying the happiest place on Earth!

By the way, Joaquin did great at Disney. His favorite by far was It's a Small World! He ADORED Mickey. Not at all afraid of him and was totally curious about his "nose", "eyes" and "ears"! Mickey spent a little extra time with our family which was really nice.

We LOVE Disneyland!

From A Sister

2010-08-11T23:01:00.000-07:00

This is from one of my "sisters" and I think she makes a beautiful statement about parenting a child... special needs or not. Here it is. Thank you Susan for explaining this so beautifully!

When a parent hears the news or finds out their child has a difficulty, there is always a grieving period of the loss of what they thought they had and hoped for their child. That can come at any time. Birth, childhood, teenage years, or adulthood. A difficult diagnosis, death, learned addictions, handicaps, different sexual preferences, whatever comes as a big surprise and possibly affects many of the hopes and dreams you have for your child as well as their quality of life, prosperity & longevity, and/or future generations takes time grieving and support while learning how to understand your part in helping the ones you love. We feel really grateful for this difficulty because we have learned so many wonderful lessons from our beautiful little girl who has Down syndrome. She radiates love and in reality it didn't take long at all to see it really isn't all that difficult or different, once we understood. The initial fear of the unknown scared us, but it wasn't hard to find hope. We have been seeing a whole new world of possibilities and have connected to amazing and inspiring children, people, families, professionals, and friends that have broaden our understanding and have instilled in life what matters most. It is such a blessing that such a small little child could open the doors to such a beautiful place that challenges us to want to be better. Who reminds me all the time what's most important in this life- people, especially those you love. All children can offer this gift because EVERY child has the potential to stretch and challenge a parent if you accept the invitation whenever they come, the key is to have faith, learn, love, laugh, and work incredibly hard to assist, mentor, and encourage & support the best out of each of them no matter what level that is and to CELEBRATE all the little miracles and wonderful achievements. Seeing our daughter work hard for everyday life without complaining, with consistent effort having great spirits about her task. Well it makes us appreciate and celebrate all the wonderful little things in life we take for granted. She has the potential to achieve pretty much everything we can with a special thanks to the opportunities in America and those who have gone before us and fought for our kids' rights and for all those who love and support and teach her now- like any other child receives. We are very lucky living in the day and age we do. These children are more alike than they are different. They have a special purpose to teach us "normal" people.

I'm BAAAAACK! Aaarrrgggghh!

2010-08-05T21:09:00.000-07:00

Here's our little pirate again! At least we are having fun with all the cool patch designs!

Those Eyes

2010-07-28T21:20:00.000-07:00

We went to see the Opthomologist again today for a follow up on Joaquin's strabismus. It was a good appointment in that Hector and I didn't allow ourselves to feel rushed and we asked a ton of questions and really got a better sense of what the doctor thinks is going on with his eyes.

The GREAT news is that Joaquin has wonderful vision. He does not need glasses and we can proceed with any reading program and visual activities that we want to do with him. This is a HUGE load off my mind as I have put off some interventions that I wanted to do with him because I was concerned about his crossed eyes.

The BAD news (but it's not really that bad) is that we have to patch again for one more month, patching his right eye (the dominant eye) for two hours a day. In one month we return to the doctor's office and if she feels that Joaquin is using both eyes equally, she will recommend surgery at that time. If she still feels there is an inequality, we will continue patching until the eyes are both being used (meaning there is no dominant eye).

The SCARY news is that it really looks like eye surgery for strabismus is in Joaquin's future. This is really hard for me to contemplate. There are many reasons why. First and foremost, we learned at The Institutes that eye surgery should always be avoided and instead we should work hard on helping to change the root or cause of the problem (the brain injury) instead of the result of the problem (the crossed eyes). Second, I hate the idea of cutting a muscle and reattaching it...especially when it has to do with his EYES! Third, I have sort of come to love Joaquin and his crazy crossed eyes and I worry about the "reasons" for doing this. Is it really necessary or is it cosmetic? The doctor seems to think that there are valid medical reasons as well as cosmetic reasons for doing this. Fourth, there is a 75% success rate for this surgery and the other 25% may need additional surgeries to fully resolve the strabismus. Uggh!

So...we have some time to think. We have at least one month of patching before we have to make any big decisions. In one month, we will see what the doctor says and go from there. We will be pursuing a few second opinions. We may see at least one more Opthomologist and then also consult with a Vision Therapist and an Optometrist. Just a few more things to add to our already full plate but Joaquin is SO worth it.

Such a HAM!

2010-07-28T00:47:00.000-07:00

Have I mentioned how much I love this kid? Oh I could eat him up! And Sofia along with him. I can already tell we are going to have a lifetime of fun with these two!

Apparently Joaquin found Sofia edible too. He LOVES to kiss his sister but I guess one of those kisses turned into a "love" bite and Sofia ended up with some teeth marks on one of her cheeks. I can't say that I blame him. Those cheeks are irresistible but I will be keeping a closer eye on him from now on!

P.S. These beautiful photographs were taken by Trace Grace Photography. Aren't they AWESOME?!?

Álvaro del Bosque

2010-07-20T18:26:00.000-07:00

Most of you know that Spain won the World Cup this month and for those who follow soccer, you know that this is a huge deal for Spain. If you ask Jen she'll tell you how passionate I am about soccer. She is probably glad it is over because I was glued to the TV for a month. The day the World Cup started in South Africa we were in Ukraine getting ready to take the train back to Kiev a few days after we took Sofia out of the orphanage. I was so stressed out because I didn't know until the last minute if I was going to be able to watch the opening match. Mexico was playing South Africa, the host nation. I kept flipping channels hoping I was going to bump into it and 5 minutes before kick off time, it came on and I was in heaven. Every afternoon in Kiev all I did was watch World Cup soccer until early morning, 3 matches every day, and back at home it didn't end until the last day. Mexico got eliminated by Argentina on the round of sixteens, so I switched to Spain as my favorite and I was really happy to see them go all the way until they raised the World Cup, raising the Cup is such a huge deal. In soccer world there is nothing like it and not many people get to do that.

This morning I got an email from my oldest brother Sergio, he is married to Elena who is from Spain, so you can imagine how excited they both are. In the email was an article about the son of Spain's Head Coach, Vicente del Bosque, who has Down Syndrome. I didn't know this about him until today so that made the whole thing extra special, and seeing this picture brought tears to my eyes.

This is a abstract of the original article from El Pais, Madrid's main newspaper:

Of the three sons of Vicente del Bosque, there is one, Alvaro, the middle child, that change his life. Alvaro was born on August 6, 1989, back then, del Bosque was the Head Coach for Castilla. A few days after a test confirmed that Alvarito had Down Syndrome. "At first we cried a lot", I confess that now that I look back I think que gilipollas fuimos, how stupid we were.
For Vicente Del Bosque and his friends, there is no thought: Alvaro is a gift that life conceded him. Yesterday in Monclova, wearing a number 6 jersey of del Bosque and before going into the Palace Alvaro gave a big embrace to his father. Later he was seen joking with Xavi Hernandez, star midfielder, in the champions bus. "My son is happy and radiates happiness. He is mischievous, but he doesn't know evil", del Bosque proudly explains. Del Bosque, convinced that things happen for a reason, remembers that when he use to play for "El Real Madrid", every morning there was a boy with Down Syndrome that use to visit us at the locker room: "I don't remember his name, just that he was a lot of fun and we really liked him, he use to grab my mustache".
They say that Alvaro is a charming young man, but that doesn't take away being critic about his father's soccer decisions, he gets mad when he doesn't play, in his opinion, the right player in a match, and every day he use to tell him that he wanted Daniel Guiza to to make the cut for the World Cup roster, the one that didn't make it and Alvaro was really mad. He took a lot of liking for 2 players during the world cup, Llorente and Javi Martínez, just because he went to a Safari with their families, so he defended them and ask his father to play them.

Meet My New Sister

2010-07-06T19:21:00.000-07:00

Here is my new sister Sofia. We are almost exactly a year apart but we look like twins next to each other. We are having so much fun together already! Mama calls us her little monkeys. I wonder why?

Future Plumber

2010-07-05T10:29:00.000-07:00

LOVE him!

2010-06-25T00:30:00.000-07:00

Can he get any more edible? This photo was taken by a friend on her iphone so it's not the best quality but I just LOVE him and his face and his green eyes. I swear I kiss him a thousand times per day!

Joaquin Stealing the Show!

2010-06-21T22:45:00.001-07:00

Our New Family

2010-06-18T10:46:00.001-07:00

I'm going to have to figure out a new blog title now that we are FOUR!

Any suggestions?

Big Brother

2010-06-16T22:21:00.000-07:00

Joaquin is a BIG BROTHER!

Sofia has arrived and our family is complete with our latest addition! Finally a little bit of pink in the house!

You can read all about our homecoming here and here. Joaquin greeted Sofia with a big kiss! He seems like such a big boy now that there is a baby in the house!

Wah-keen Walking!

2010-06-11T22:45:00.000-07:00

Sums It Up

2010-06-02T11:02:00.000-07:00

This article really sums it up. One of the most frequent questions I get asked when on the topic of Joaquin is "Did you get prenatal testing?" I'm pretty passionate about this topic and I can feel my blood boiling a bit whenever I think about it. This article is so well written. It accurately describes my own feelings and thoughts...so much so I found myself in tears reading it. I just relate.

Check it out here.

There's no such thing as the perfect child.

Over It

2010-05-26T10:56:00.000-07:00

Joaquin has another evaluation coming up for his Early Intervention services so all his therapists are doing their 6 month evaluations on him and letting me know where he falls on the spectrum as far as his abilities or lack of abilities. One of our teachers from Easter Seals was asking me all sorts of questions like how many words does he say and how many words does he sign. I told her "a bunch". She wanted a number. I told her I don't really count them but he has a lot and we are happy with his progress. Again, she wanted a number. I told her I really don't know and I really don't care to count them out. He's behind for his age as far as his typical peers go so why does it matter what number of words he says.

Can you tell I'm over it?

I really am. I love Joaquin. He is amazing. He does amazing things and he does them on his own time. He is progressing and he is improving all the time. I don't see the point in putting a "number" on it. I KNOW the therapists have to do this in order to justify his therapies and I UNDERSTAND that, I'm just over it.

I told the teacher from Easter Seals put whatever number or age range you want, it really doesn't matter to me. I'm happy with where Joaquin is at right now. She was SHOCKED! She said so many parents want to know exactly where their kids fall in the "typical" range and these parents keep very close track of it. I don't. I don't keep Joaquin's therapy notes. I read them and then I toss them. Sorry. I live a lot of my life in the moment and I don't like to dwell too much on things and maybe this makes me a bad parent. But I don't think I am. Joaquin gets over 6 therapies a week and I make sure he gets to all of those appointments and he rarely if ever misses them. I read to him, sing with him, sign with him and play with him all day every day. He is surrounded by his two big brothers every day. He is in our community every day socializing with my friends, his brother's friends and his own friends. He gets loved on by his grandparents almost every day. He's pretty integrated into our lives I would say. And for the most part, besides those 6 hours of therapy a week, he's just my normal child. Sure he's over 2 and just starting to walk, that's ok with me. He's going to walk, run and jump soon enough. Sure he's over 2 and not talking in sentences, but he is communicating and he is getting most of his needs met through his signs and limited words. He will continue to improve on this with time.

Again, I may be in for a huge reality check when it comes time to transition from IFSP's to IEP's but I know my child and I know how to advocate for him so I'll cross that bridge when I have to.

So, when it comes time for these 6 month reports, I just simply get through them, nod my head, make sure Joaquin gets the services he needs and then move on. I do not even care to hear where he falls on the spectrum...I just don't. Like I said it doesn't matter to me. I'm over it.

Ok...thanks for the vent.

Pirate No More

2010-05-20T22:02:00.000-07:00

I called Joaquin's eye doctor today to get some advice on what to do about our patching prescription of 3 hours a day. Ever since we've started patching, Joaquin's good eye has started turning in a lot and his strabismus has gotten much worse. I was fully expecting to hear that we needed to continue or maybe to alternate patching on each eye.

Well, they are giving us a "patching vacation". She said that it's an excellent sign that Joaquin's good eye is turning in now. She said the brain is now switching to using his "bad" eye more than his "good" eye and that his sight has most likely returned in the "bad" eye.

She'll see us again in July and reevaluate. Sigh. Okay.

P.S. Above is a photo of Joaquin with his buddy Sheridan who is having open heart surgery next week, please say a special prayer for him and that he recovers quickly and is back playing with his buddies as soon as possible! And see this very special quilt we had made for him at Monkey Musings. We love you Sheridan!

My BIG Boy!

2010-05-17T10:29:00.000-07:00

Monica & David

2010-05-13T15:47:00.000-07:00

I cannot WAIT to see this documentary. It won Best Documentary at the Tribeca Film Festival. ANYTHING is possible for Joaquin...and Sofia...and all their peers! I cannot wait to see what the future holds for Joaquin and for Sofia.

Monica & David

My Beautiful Boy

2010-05-04T22:13:00.000-07:00

Update on "Joaquini"

2010-05-03T03:16:00.000-07:00

My little angel boy is growing up. He is consistently standing on his own and taking 2-3 steps without prompting. With prompting, he is taking 5-8 steps. He may be walking by the time we return from Ukraine in a week. It's so exciting and I can't wait for him to take this next "step" in his development.

On another (more disturbing and shocking) note, my mom took Joaquin to see the eye doctor last week since we were in Ukraine and didn't want him to miss this appointment. We've been waiting over 9 months to see this doctor. Pediatric opthamologists are few and far between. The last time we had Joaquin's eyes checked, his vision was excellent and he had a strabismus that we were addressing with patching periodically as needed. His strabismus has slowly improved with time and when he started creeping on hands and knees, it was improving even more. He has excellent vision as far as we knew because he can make the sounds and signs of different animals and objects when looking at their pictures and he never runs into things or stumbles and he seems to know and "see" exactly what he wants to. He loves his Signing Times videos and also imitates those while watching the TV and it never appeared that he was using only one eye. So we knew he could "see" and weren't concerned too much. We were just eager to hear what the specialist would say about his improved strabismus and see what else was new with his sight.

Imagine my surprise and shock when I got an email from my mom that the doctor said Joaquin is almost BLIND in his left eye. WHAT?!?!? So the specialist recommended immediate patching of the right eye for 3 hours per day for 3 months to see if he can regain any sight in his left eye. Shock...that's all I felt...shock. When did his excellent vision deteriorate when all we saw was progress?

So my mom has been patching Joaquin religiously since then. What is very interesting is that even when patched, Joaquin can see. He gets around just fine, doesn't bump into things. He watches his programs and looks at his books. He does everything he normally does...so how is that blind?!? We will continue to do the patching and I am VERY eager to go to the next appointment and try and figure out what is going on with Joaquin's sight. I have a million questions and I will NOT miss this appointment.

I feel horrible about all of this. I feel responsible. I don't understand how this happened. I just want the best for my boy and will do whatever I can to help him. So I'm hoping and praying that his sight will be regained in his left eye. These things we take for granted...sight...vision...are so crucial and seem even more so when the challenges are already stacked against my little guy.

Love you "Joaquini"!

Make Room For Pink!

2010-04-24T11:13:00.001-07:00

Diego, Mateo and Joaquin have a baby sister in the making!!!

Can you just imagine the smooches this little girl is going to get when she gets home! I can't wait to see the boys with her. I know Joaquin especially is going to LOVE all over her!

I've Got My Copy Ordered

2010-04-09T22:17:00.000-07:00

Do you?

I'm Down With You

Musings of Modern Mamas

2010-04-08T04:32:00.001-07:00

Both our Three's A Charm blog and our Saving Sofia blog were featured at Musings of Modern Mamas the past two weeks. Check it out! What an honor to be recognized in this way!

Thank you Kaydee!

Wordless Wednesday- Ranch Weekend

2010-04-07T00:00:00.001-07:00

One Step Closer...

2010-04-06T06:04:00.001-07:00

...to becoming a family of SIX!

Check it out...Saving Sofia

The boys are one step closer to having a baby sister!

Sofia...here we come!!!

Wordless Wednesday- Happy Easter 2010!

2010-03-31T10:31:00.000-07:00

Standing and Stepping

2010-03-28T16:10:00.000-07:00

He did it!

He's standing on his own! He has taken one step from that position as well!

Walking is JUST around the corner.

We're so proud of you Joaquin and so excited for this next new stage in your development!

"Joaquin Funny!"

2010-03-23T19:48:00.000-07:00

These are the words of our *almost* 2 year old neighbor Addison when you ask her to sum up our attempt at an annual St. Patrick's Day photo in front of our tree.

It was quite an effort to get all 5 kids still and smiling at the same time and little stinker that he is, Joaquin was the MOST difficult. All he wanted to do was escape and crawl down the street...his new favorite past time much to my dismay. I cannot for a SECOND keep the front door open or my escape artist is literally scurrying down the front porch steps, down the driveway and then down the street. This boy is LIGHTENING fast when he crawls. I really have never seen anything like it. He is SPEEDY!

"Joaquin Funny!"

So Sweet

2010-03-22T15:39:00.000-07:00

On Saturday we attended a local community outreach and support meeting for families touched by Down syndrome sponsored by DSIA.

We left our kids downstairs for music with Music to Grow On and an art session by Maren's Art Studio while we went upstairs for a discussion session just for the parents. I have to say I was a bit nervous leaving my 3 very active and sometimes rowdy boys but when we got downstairs, the first thing I saw was this.

Joaquin had fallen asleep in the arms of J.P., a self advocate and avid golfer...and apparently a baby whisperer. It was the sweetest thing to see.

World Down Syndrome Day 3-21-10

2010-03-21T11:20:00.000-07:00

Happy World Down Syndrome Day....3-21...in honor of that VERY special extra chromosome that seems to be somewhat magical.

We love you Joaquin and everything you have taught us...to appreciate the beauty in all things and to let go of the myth of perfection.

You are a GIFT!

My Son Ate My Calendar!

2010-03-09T09:48:00.000-08:00

You've all heard the excuse..."My dog ate my homework!"

Well, today I went to go grab my appointment book which I often call my Bible because it holds EVERYTHING I need to know to function on a daily basis! I found it on the floor near the dining room table and there were a few remnants of wet and chewed paper next to it.

JOAQUIN ATE MY CALENDAR BOOK!!!

He helped himself to two pages...this week and next week...and now I'm totally LOST!!!

I'd be freaking out if it wasn't so darn funny. Silly...and apparently hungry...boy!

Now off to figure out what I had planned and scheduled for this week and next. Yikes! Just happens to be two very important and busy weeks in our lives right now!

NDSC Poster Campaign

2010-02-28T19:04:00.000-08:00

To cast a vote for Joaquin, go to the NDSC website and scroll down the first paragraph where it says "To pick a poster..." and pick poster #199 if you love Joaquin's! You can also vote for his baby sister Sofia by picking her poster #200!

"R" Word Speech You Don't Want to Miss

2010-02-20T21:37:00.000-08:00

Kevin's R Word Speech

A fellow blogger and friend Lisa at Finnian's Journey recently posted this very touching speech by her oldest son Kevin (13) who plans on presenting it to his student body and their families. I'm so very proud of him and can only HOPE my two oldest boys will follow in Kevin's footsteps and be an advocate for their little brother (and soon to be baby sister) some day.

I love Dan!

2010-02-19T05:16:00.000-08:00

If you haven't "met" Dan, you need to go check him out on his brother's blog titled Dan Drinker. This post and this post are just two of many posts that I seriously get the biggest chuckle over. I cannot wait to "get to know" Joaquin as a young adult (although I'm totally savoring his babyhood!) I have to think that based on Joaquin's personality now that he just might have a similar sense of humor.

I adore you Dan!

Heroes Among Us

2010-02-16T15:59:00.001-08:00

Reece's Rainbow founder Andrea Roberts will be featured in this week's People Magazine, in a section called "Heroes Among Us". The edition will be available Friday, February 19th. This is a wonderful opportunity for others to learn about Andrea and all she is doing through Reece's Rainbow--and to get the word out about the plight of orphans with special needs in Eastern Europe. Please check it out!

A Birth Story

2010-02-04T12:13:00.000-08:00

I stumbled upon a birth story that may quite possibly be the MOST beautiful thing I have ever read. I feel like I was a witness to this birth the way she so accurately and intimately describes it. Maybe it's because her story resonates so deeply with my own story.

Get ready to be completely moved by this....Nella Cordelia

Turning Two

2010-02-02T15:59:00.000-08:00

How is it that my baby boy is 2 today?

What an amazing two years it has been. I love this little boy so much it hurts.

Happy Birthday Joaquin! We adore you.

Chills

2010-01-31T09:49:00.001-08:00

This website I came across today just gave me the chills as I read his foreward. What an amazing project and an amazing man.

Check it out....I'm Down With You

A Little Girl Named Sofia...

2010-01-27T14:01:00.000-08:00

...has stolen our hearts and we are committed to bringing her home.

We're ADOPTING!!!

Please join us on our newest adventure and meet our little girl who will complete our family.

Saving Sofia

Four is the Magic Number

2010-01-26T20:40:00.000-08:00

Here is your riddle for the day....

13 is 8 is 5, 5 is 4, 4 is 4 and 4 is the magic number. Why?
Hint: 6 is 3, 3 is 5, 5 is 4, 4 is 4, and 4 is the magic number.
Hint: 26 is 9, 9 is 4, 4 is 4, and 4 is the magic number.

Now what would this have to do with Three's a Charm?

Finding Home Away From Home

2010-01-18T20:12:00.000-08:00

Awhile back we went to Disneyland with the kids and I remember posting how shocked and sad I was to report that I did not see one child with DS in all of Disney. I was shocked by that.

Well, I'm happy to report, I saw not one but THREE children with Down syndrome on our recent trip to Playa del Carmen, Mexico. All three were very "normal" and happy families and the kids were absolutely darling. Two of the kiddos were babies Joaquin's age or younger and one boy was about 9 or 10 years old traveling with his American family.

It was such a joy for me. Two out of the three families, I wasn't able to make a connection with as they were either passing by or busy doing their own thing. But one family in particular I was able to not only meet but really connect with.

I had the pleasure of meeting Iliana and her parents and we spent some good quality time together. Mom was Romanian and Dad was from Argentina. Their daughter Iliana was born in Romania but was flown quickly to Italy to have heart surgery when her diagnosis was made because, as Dad put it, there was "no way in hell they were going to have her surgery done in Romania." Iliana is now 15 months old and they have a new baby boy who is almost 3 months old who was born in Veracruz, Mexico where they live now.

We spent a lot of time talking about how amazing it is to have a child with DS and we also did a lot of comparing on the services provided for a child with DS in the States vs a child in Mexico or in Eastern Europe. Dad is an international engineer of sorts and moves every 2-3 years so they are really hoping to move to the States in the near future to take advantage of the services. Mom is a psychologist and also had such great and deep thoughts to share about the joy of raising her daughter. We had so much in common as I think all of us parents do when we have a child with DS. I just loved it. I loved meeting them, playing and visiting with their family and watching Joaquin and Iliana play together.

It was like finding home away from home. And I think we'll have these experiences more often than not for the rest of our lives. I really feel fortunate.

Xcaret

2010-01-17T16:30:00.000-08:00

Xcaret is an eco park just outside of Playa del Carmen and it's such a cool place to go with the family...highlights were the bat cave, the floating river, the butterfly preserve, and the turtle preserve. It was our third visit there. We love it!

Here is another family photo on the giant hammock on the beach.

Beach Baby

2010-01-16T09:09:00.000-08:00

The sun, surf and sand really agreed with Joaquin. I think it's safe to say he is a Beach Baby!

Then and Now

2010-01-15T13:47:00.001-08:00

Here we are in Playa at Christmas time in 2005 and then in 2009...one of these things is not like the other?!?! One of these things just isn't the same...and we are so glad about that!

I'm kinda happy to report that Hector and I don't look too much older, right?!?!

Happy 5th Birthday Mateo!

2010-01-14T08:15:00.000-08:00

Turning 5 is a big deal around here. It's always been my favorite number and for some reason age 5 just seems so BIG!!! Mateo turns FIVE today and we will spend the day celebrating him. With two boys over the age of 5 now, it feels like our family is about to head into a different mode. Every year our boys will grow more independent. Makes you want to take a moment and just cherish these years. Thank God I have the ability to be home with my children and savor it all...the hardest job in the world but the BEST job in the world. Thank you Hector for making this possible for our family.

Happy Birthday Mateo. We love you so much!

Changing Perspectives and Expectations

2010-01-13T16:44:00.000-08:00

Check out this link and learn about a Spanish actor who has a degree from a University (and is pursing his second) and oh, by the way, he has Down syndrome....

The Need for Inclusive Education

A Leap of Love

2010-01-13T13:47:00.000-08:00

Here is an article from The Washington Post about an amazing family who adopted three boys with Down syndrome after the birth of their son, Jonny, who also has DS. Their daughter, Maddy, just happened to audition for this season's American Idol and made it through! She is not only a very grounded, compassionate 16 year old girl but she has a gorgeous voice as well. Please read this article about her wonderful family!

A Leap of Love

Wordless Wednesday (Playa del Carmen)

2010-01-13T10:43:00.001-08:00

A Beach in Tulum at Dusk

2010-01-10T17:55:00.000-08:00

First Stop...COBA

2010-01-08T14:09:00.000-08:00

Coba is the tallest Mayan pyramid in the Yucatan and we all climbed it....well, everyone except for Joaquin. But he made it up about 4 steps!!

This thing was TALL and steep and VERY scary.

It took about 3 miles hiking in the jungle to get to the pyramid and the boys were all troopers.

As soon as we got there, Diego started climbing all by himself. I yelled to Hector to go after him after a German couple looked at me like I was crazy and said "Wow, he's brave." I realized then how DANGEROUS the thing was. So Hector went up after him and Mateo followed right behind.

Now, anyone who knows me also knows that I am NOT a nervous parent. I'm pretty easy going and usually remain calm even when faced with potentially dangerous situations. But this pyramid had me sweating. There I was at the base of the pyramid clinging to Joaquin in his carrier and I was literally praying out loud to God to keep the boys safe as they fearlessly climbed to the top. I was SO nervous.

But...they made it! And they made it down. Hector said it was the scariest thing he's ever done with the boys. Diego was thrilled and Mateo was totally cool with it. Mateo is usually my very cautious little guy but he really tackled the climb with absolutely no fear. Amazing!

When Diego said he wanted to go again, I said I've got to do this. I've got to tackle my fear. I have the BIGGEST fear of heights. As I climbed I didn't look up or down. I just stayed as close as possible to the rocks, keeping my center or gravity as close as possible to the stones (I must have looked ridiculous) and eventually I made it. The view from the top was worth it all...nothing but miles and miles and miles of untouched jungle. Gorgeous! I'm so glad I did it.

A Mexican Holiday

2010-01-07T20:00:00.000-08:00

We spent 12 amazing and beautiful days in Playa del Carmen, Mexico. Playa is about 40 minutes south of Cancun on the Caribbean Sea...the clearest aqua blue water that you have ever seen! It was a wonderful vacation for our whole family and we were able to celebrate both Christmas and New Year's there. It was the perfect time to take Joaquin. He is the best traveler in the bunch. He spent his time crawling everywhere, standing up and cruising around different obstacles, playing in the waves and the sand and overall just LOVING the sunshine and the beach.

I plan on sharing different parts of our trip in the next few posts so I can share with you our adventure. And BOY, what an adventure it was!

Our Christmas Tree Angel

2010-01-03T14:40:00.000-08:00

This Christmas I decided to get involved in the Christmas Angel Tree Project at Reece's Rainbow and I hope to make it an annual tradition.

I chose to sponsor Sofia. I absolutely fell in love with this little girl who is in an orphanage in the Ukraine. Her birthday is February 21, 2008. She is almost the same exact age as Joaquin. She is beautiful and I have to say that I can't stop thinking about her. I have always wanted a little girl and the name Sofia was going to be Diego's name if he had been a girl. I sent in a donation and received a beautiful porcelain ornament with her picture on it.

If and when our financial situation should change and afford us a bigger home (or at least one with two bathrooms) and just a bit more cushion to help with the additional costs, I would most definitely look into adopting a child from Reece's Rainbow. I am so inspired by my blogging friends who have adopted or are in the process of adopting from Reece's Rainbow. They know the absolute joy and honor it is to raise a child with Down syndrome. I so wish I could bring Sofia home and it pains me to think it isn't possible at this time.

Happy New Year sweet Sofia. I hope your forever family finds you as soon as possible! We send you our love and will always think of you at Christmas time when we put your ornament on our tree.

Precious

2009-12-10T22:06:00.000-08:00

A must see movie.

A very intense and difficult movie.

I am at a loss for words on how to describe this movie so I will direct you to a wonderful review on The Feminist Spectator.

And how does this relate to my blog and my journey with Joaquin? Well, I had no idea myself until a scene with "Little Mongo" appeared and took my breath away.

An excerpt from The Feminist Spectator's blog:

Precious’s first baby by her father has Down syndrome and has been banished, by Mary, to live with Mary’s mother. Mary, who can’t stand the sight of her, calls the baby “Mongo,” short for “Mongoloid.” The sweet girl is friendly and affectionate, cheerful and placid. When Mary’s mother, wary and suspicious of her own daughter, brings the little girl to their Harlem apartment in anticipation of a city social worker’s visit, the three-year-old’s non-discriminating, innocent affect throws into even sharper relief the cruelty in which Precious lives.

Innocent, non-discriminating, friendly, affectionate, cheerful, placid. Words l love to hear associated with children with Down syndrome. Words I've found to be so true.

All I can really say is, go see this movie. It will move you.

Litmus Test

2009-12-09T20:23:00.001-08:00

I seriously think that Joaquin could be the ultimate litmus test for whether or not a person is truly good or capable of true joy and love.

Case in point...going through the airport with Joaquin in the stroller waving hello and blowing kisses to ABSOLUTELY everyone. And he does this with absolute abandon and at the same time is so genuine about it. Watching people's response to this type of open affection was truly remarkable. I felt like I was the director of some social experiment. People either completely "got it" and were just as open with their affection back to him or people just looked with confusion or disbelief. I really feel bad for the latter.

It was so refreshing to see people give the love back to Joaquin or just to see that their day was made brighter by the smile of a child. Even young children were touched by his enthusiasm. On the other hand, it was so sad to see some people who were so inside themselves or so downtrodden that they were not able to embrace or even acknowledge this sweet boy giving them love.

All I can really say is that it was a joy to be a passenger on Joaquin's love train through the airport.

Christmas Card 2009

2009-12-07T20:06:00.001-08:00

To all my blogging friends who are now my extended family, here is our Christmas card this year. Merry Christmas and Happy New Year!

Fashionisto

2009-11-29T19:33:00.000-08:00

Here's my baby boy looking like a big boy and rockin' his new baby leggings that we won from Knotty Baby Wear on Down Syndrome New Mama's blog. Thank you again girls!

So darn cute! We've had a LOT of fun with them and Joaquin seems to really like them too. We love putting them on with onesies and Joaquin gets a ton of compliments on them!

Breaking Up

2009-11-23T11:08:00.000-08:00

On the day of the Buddy Walk this year, I had the pleasure of walking with a friend of mine Gina and her 36 year old sister Renata who has DS. I had so much fun getting to know Renata better and we became fast friends. We even held hands for some of the walk and it was as natural as can be. She is such a sweet, dear person and is one of my personal heroes as she has overcome many health issues (unrelated to DS) and the fact that she had DS may have been one of the contributing factors to her ability to survive. More on that for another post.

During our walk, Gina asked Renata if she could share the story about her recent breakup with her boyfriend. She went on to tell me that Renata had had a boyfriend (who also had DS) for a couple of years (they worked together) and recently her heart was broken. Her boyfriend had broken up with her. And here is where you have a smile a little bit. Even Gina and Renata can laugh about it now. Her boyfriend broke up with her...not for another woman...but for a man!!!

Renata went on to say that yes her heart was broken but mostly that she was caught off guard by his announcement. She also said "I'm over him!" and said she wishes him well in his new love pursuits.

So...another example that yes, people with DS are more alike than different. Sounds like some good material for a Maury Povich episode to me!

Our Fragile Emissary

2009-11-22T19:40:00.001-08:00

Our Fragile Emissary

With modern screening and such
they wonder why
you're here, on this earth
in our home
and in our arms,
after all, anyone
with any sense would have resolved
this problem of you
pre-birth, pre pain.

Blonde Beauty,
tiny as you are,
you catch their stares,
strangers' second glances
into tender baby blues.
And your young
sweet ears hear whisperings
("Down's," "defects")
words dropped loosely
at extra-chromosomed girls.

With such stinging receptions
how we long to shelter you,
surround you; keep your
gentle smiles to ourselves.
Instead, we hold you
up, for others to see;
let you, our fragile emissary
speak to an imperfect world.

Written by Nancy Tupper Ling

Palin on Oprah

2009-11-20T15:30:00.000-08:00

Did anyone see it? Sarah Palin on the Oprah show? Thoughts?

Loved seeing Trig. Didn't love Oprah's line of questioning on Sarah's pregnancy with Trig. Didn't love Oprah's choice of words when talking about Trig's Down syndrome.

Politics aside, I would actually love to see more of the Palin family and Trig. They look like a really normal, healthy, happy family. Looks like Trig is getting really close to walking! Trig and Joaquin are really close in age so I will always have a fascination in following that cute little boy.

I just read on Yahoo News that Palin's appearance on Oprah's show received the highest ratings since 2007 when the Osmond's appeared on her show. Pretty interesting!

Chromosome Cake

2009-11-16T13:53:00.000-08:00

Just this evening, Hector and I had a great opportunity to attend a Sibling Workshop led by two experts in the field of sibling relationships in families with special needs. Dr. Brian Skotko and Sue Levine led the workshop and I feel so lucky that DSIA flew them out to Sacramento to speak with a small group of us. Diego was able to attend the breakout session for children ages 5-8 and then childcare was provided while Hector and I attended the parent session.

It was so informative and Diego also really enjoyed having his session with some peers experiencing the same thing he is. I think Sue validated the kids feelings no matter what they were and helped them to process having a sibling with DS. The kids expressed their feelings and also shared advice to their parents. It was really eye opening to see the things they said on their brainstorming papers. Things like "Pay attention to us too" and "Let the baby rest sometimes" and "Be fair" and "Have a baby with DS". This last one Sue and Brian mentioned is really interesting. They have collectively been doing this type of thing for 35 years and they said in the last 5 years more and more often kids (and really young ones) are talking about prenatal decisions and choices. So when the kids said "Have a baby with DS", they meant that they feel babies with DS are wonderful and they want them in their lives. Interesting!

One of the best tidbits of the night was a tip on how to explain how or why an extra chromosome can make such a difference in people. Sue mentioned this "recipe" was one way a mom in one of her previous sessions explains it so that even young kids can understand....

Chromosomes are ingredients that make us who we are and it's like the ingredients in a cake. All cakes are made with flour, sugar, eggs, some vanilla and some oil in our cake batter and we bake it in the oven and out comes a yummy, delicious cake. Having an extra chromosome is like adding in an extra egg or maybe a little extra oil. You still get a yummy, delicious cake but this cake might be a little softer, spongier or stickier but it's still a yummy delicious cake.

I thought this was a GREAT way to explain it...not to mention it kicked in my sweet tooth!

Thank you Sue and Dan for an awesome afternoon and thank you DSIA for hosting them.

Words From The Wise

2009-11-15T20:04:00.000-08:00

I found this note on a Yahoo Group that I belong to and I thought it would be great to share. Rick Dills is a father of a 36 year old daughter with DS. This is his advice when thinking about your child's educational plan.

Here are his words:

My attitude is to step back and let the combination of your child and the education system work. I don't think that it matters whether a child is in a special program, mainstreamed, or included provided that the teachers really want your child and get significant personal satisfaction from her/his success.

There is much more to life than academics or inclusive (age appropriate) social contacts.

Yes, many of the "poster children" had immense resources spent on them. Most were already among the elite with DS in that they had much more than average capability and have achieved in specific, but important areas. Each of our children is different and each is valuable whether they are "poster children" or perhaps more handicapped from the beginning than Karen Gaffney. WE ARE NOT INTO COMPETITIVE CHILD RAISING !!!!

My observation is that satisfactory adult outcomes do not correlate with how hard you have pushed your child, but rather on how you have taught them to be proud of who they are. Setting the bar too high prepares both parents and the child for failure.

If you have lots of money, you can spend it on your child in elementary school. I would recommend saving for potential post-high school training to help your child (whatever level she/he is at) to live as independent and happy a life as they can. It is just like normal kids. Private schools are OK if you have lots of money, but if that means you don't have enough for college, you have made a big mistake.

Remember that you have a life and is isn't just taking care of your handicapped daughter. My wife and I decided from the beginning not to let this be the end of our personal lives and development. Over the years I had a remarkable career, but I did find extra time for the things Jan needed. My wife went to med school when Jan was 10. The payback for that was that when Jan went through her awful life threatening years, her Mom was there and trained to help. There were times when Jan would have died, had it not been for Mom's intervention in her care.

We raised our child with the expectation that she would go on to her own life as an adult. That is where she is today and that is where most of her peers are. The few who are "poster children/adults" are doing just fine in their 30's, but so are those who simply had ordinary caring parents who didn't have the resources to make their child a public example.

See that your child is happy and developing, even if more slowly than those without Down syndrome. See that they are praised
enough to be proud of themselves. Put your energy into the places where you can provide something that the school and other programs cannot. We included Jan intensively in our lives, hiking, swimming, skiing, and in just doing the same chores her brothers had. I stepped in when programs weren't available such as being her coach in Special Olympics when there wouldn't have been a program if I didn't.

Work WITH the people whose job is to train and support your child in a teamwork fashion and not in a confrontational one. We had a major blow-out in Jan's care in the past week. It will be taken care of because there is no blame, but rather a need for different handling in the future. Mistakes happen, but you don't have to get mad.

Yes, some people won't appreciate your child when they should. Try to fix that or if necessary withdraw your child. I always felt that Jan was a gift to the world. If you didn't want that gift for some reason, you were not entitled to have it. It is the other person's loss and not Jan's.

Rick ... dad to 36 year old Jan who does have Down syndrome and is an
individual, just as your child is!

The Episode of Glee

2009-11-13T14:42:00.001-08:00

I have never watched the show before but I got a tip on Facebook to watch it this week.

I would love to hear how the DS community felt about the show. I found it touching at times and "touchy" at times. I'm still processing it.

For those not familiar, Glee is a popular musical sitcom on Wednesday nights on FOX around 9pm. The episode this week included two actresses with DS. One portrayed a cute, bubbly high school student trying out for the "Cheerio's" and the other portrayed an older, nursing home bound sister of one of the main characters on the show.

I would love to hear people's thoughts about the episode. I was surprised that there wasn't much blogging activity on the subject. I think we all might be too busy to watch much TV but if you did get a chance to see it, please share your feelings!

Apparently, the actresses will appear again in upcoming episodes as their story line is not complete yet. I look forward to watching it.

Here's a link to the full episode. You can even watch it online.

"Wheels"

One Lucky Baby

2009-11-12T08:32:00.000-08:00

Joaquin is one photographed baby, let me tell you. We had the pleasure of meeting a new friend and mom of a child with DS last weekend, Michelle Slape. She is a photographer in a nearby city and she is considering specializing in special needs children. For DS Awareness Month she offered a free sitting for families with a child with Down syndrome. We took her up on her offer because...well...I just didn't think we had enough photos of Joaquin. Hahahaha!!!

Anyway, I'm glad we did it. One...Michelle is adorable, talented and she is a mom of two sweet boys...one who happens to have DS and the world's most infectious grin. His name is Cody and I can't wait to meet him next time. Two...it's fun to see different photography styles and to help inspire a possible career direction. I hit it off with Michelle the moment I met her and I hope we can get together again with our kids sometime soon.

Here is her latest blog entry. Enjoy! And THANK YOU Michelle for a wonderful morning and some beautiful photos. I can't wait to see the rest of them!

MRS Photography "My Heart Has Been Touched"

Teachable Moment

2009-11-11T19:08:00.000-08:00

I was chatting with a new friend at the park today and the subject of Joaquin and DS eventually came up. She said she wasn't sure that Joaquin had DS because he seemed so happy. She said that she thought all kids and babies with DS were usually sad and lacked emotion. This was her vision of DS and she said that Joaquin didn't fit that vision.

I was kinda stumped. I thought the misconception was the opposite but it goes to show you that the misconceptions are all over the map. I responded by saying that typically people assume that kids with DS are always happy and reassured her that Joaquin has all sorts of emotions and that he can be sad at times too. I told her that maybe she was mixing up low muscle tone in the face with being a sad, emotionless face. I'm thinking that maybe her vision of the typical open mouth face with the relaxed tongue is what she was referring to. I tried to explain that children with DS are just like any other child. I think it made sense to her...I hope. I hope it was a learning moment for her.

I hope to never pass judgement on people's misconceptions. I hope always to be kind, informative and open when chatting with people about DS. I want to be an advocate not an adversary.

HAPPY HALLOWEEN 2009

2009-11-01T01:30:00.000-07:00

May the FORCE be with you this Halloween!

P.S. We won Hector's Employee Halloween Photo Contest with this picture...a $100 VISA card! Woo Hoo!

Walking for Joaquin 2009

2009-10-27T09:51:00.001-07:00

We had a blast at our 2nd Annual Buddy Walk (a.k.a. Step Up For Down Syndrome) on October 25th. We raised a total of $1425.00 (just $75 away from my goal and there is STILL time to donate) and had exactly 60 team members walking with us on the most beautiful Fall day. Our colors this year were yellow and orange and I continued my tradition of tie dying t-shirts for all the kids "Walking for Joaquin". Joaquin's Aunt Jennifer made the most beautiful and amazing J-O-A-Q-U-I-N banner that was hand sewn and appliqued with love. Team "Walking for Joaquin" was shining bright that day!

Here are just a few photos from the day...more to follow soon!

Name Tag

2009-10-22T07:41:00.001-07:00

How did we come up with the names for our three boys?

First of all, I was fortunate enough to marry someone from Mexico and with a last name of Sanchez, we had the WHOLE world of Spanish/Latin names open to us. These names just happen to be my most FAVORITE!

Diego Zacarias....Hector and I both loved the name Diego. It came rather quickly for us. If you ask Hector he will tell you we named him after Diego Maradona (a famous soccer player in Argentina). I was always fond of Diego Rivera's art work (a famous Mexican muralist). But there was something about the name Diego that was so handsome, strong, and fresh. Mind you...this was before the "Go Diego Go" cartoon! So it was very quick that we agreed on the name. Diego is the Spanish name for James and you may also know it from San Diego (St. James). The middle name was a struggle but at the FINAL moment...like when we had to fill out the paperwork at the hospital for his Social Security card...we decided to go with Zacarias which is the name of Hector's maternal grandfather that he never knew. (By the way, Diego would have been Sofia Isabella if he was a girl!)

Mateo Emilio...Again, Hector and I loved this name. Another one of our all time favorites. We loved the sound of the name and beauty of it as well. The nickname for Mateo is "Teo". Mateo is the Spanish name for Matthew. Mateo was actually born in San Mateo County, how cool is that? San Mateo or St. Matthew. We also loved the name Mateo alongside Diego. They just sounded so good together. For the middle name, we decided to stick with the theme of it being a family name so we chose Emilio which is the name of my paternal grandfather who I never knew. (By the way, Mateo would have been Olivia Andrea if he was a girl!)

Then came Joaquin Andres... Hector and I went back and forth on the first name. I loved the name Joaquin and Hector loved the name Lorenzo. For the first time, we really couldn't come to a quick agreement. So we battled it out and in the end I chose the first name and Hector chose the second name. And yes, there is also a San Joaquin Valley here in California so you could say we have very California names for our boys! Then, so many cool things happened surrounding our little Joaquin Andres. You'll have to read one of my earlier posts about the meaning behind "Joaquin". You'll have to read Gifts 2 or go back to the early days of my blog and find my post titled Andres to hear the story of how we chose the middle name. It will give you chills. (We never really came up with a girl's name for Joaquin because we knew early on that he was going to be boy but I remember being very fond of Luciana and Hector loved Mia.)

Thank you Cheri for "tagging" me on this fun name game challenge! I love hearing stories about names. Isn't it one of the first of many big and important decisions you make for your child? So fun!

I tag...
Monica at Monkey Musings
Lisa at Bridget's Light
Elena at The Baby Who Chose Us

The Varanini Family

2009-10-21T21:55:00.001-07:00

Here is my side of the family. We took this photo over the summer at a good friend's wedding. I am the oldest of four and there is a 12 year span between my sister and I with my two brothers in between. It's just missing the kids. My brother and his wife Jennifer have 2 precious girls...Jillian and Jolie which added to our trio of boys makes a total of 5 nieces and nephews! Here is a shot of just the siblings: Zach, Myself, Sarah and Josh.

Here is a snapshot of the "manly men" looking very proud, proper and handsome in their suits.

Here is a snapshot of the "girly girls" looking pretty darn cute and sassy.

My parents will be celebrating their 40th wedding anniversary in January. It's so cool that Hector and I both have parents who have stayed together through the good times and the bad, for richer for poorer, in joy as well as in sorrow, and in sickness and in health.

What amazing role models we have!

La Familia Sanchez

2009-10-21T10:52:00.000-07:00

Here is a photo of Hector's side of the family when we went to visit them in Mexico a couple months after Joaquin was born. This was Hector's parent's 50th Wedding Anniversary! It was at this amazing reunion that we announced Joaquin's diagnosis and where I was inspired to write the entry for Gifts 2. You can read about what happened in Mexico by picking up a copy of the book. Our chapter is titled "Joaquin & Andres."

Hector's family is really lovely. He is the youngest of 7 children so when we all get together it's a pretty big party! This photo is of his immediate family only (only one nephew is missing from the photo). Everone is married and has at least one child. I think we have a total of 16 nieces and nephews and 14 of those are BOYS!! We look forward to seeing some of his family this Christmas and New Year's when we go to Playa del Carmen. It's going to be so much fun!

Proof

2009-10-18T23:30:00.000-07:00

Remember a few weeks back I wrote a post about Mr. Troublemaker?

Well, here is just one piece of evidence.

Yes, he got himself inside the train table drawer.

Yes, he emptied almost every train that was inside of it.

Yes, he then proceeded to get on top of the train table to throw the rest of the trains on the floor.

Proof that we have a very mischievous one in our household!

Super Porridge

2009-10-17T08:29:00.000-07:00

I got this recipe from a fabulous mom who makes the most gourmet (and nutritious!) baby food for her little one.

Super Porridge

1/3 cup dry grain and 2 Tbl. dry legume. For the grains, you can use oatmeal (steel cut or regular, not quick cook), brown rice or bulgar wheat. For the legumes, you can use garbanzo beans or kidney beans or even lentils.

Here's the recipe (really simple!):
Grind the 1/3 c. grains and 2 T. legumes together for two minutes using a blender, Vita Mix, Cuisinart or "Bullet". The key is to grind it for 2 whole minutes. It becomes a powder. Bring 2 cups water to a boil and add the ground powder. Whisk to combine. Reduce the heat to low and cook for 10 minutes and it's done. This recipe should give you 5 or 6 servings. You can cool it down in the fridge, then cut it in to serving sizes and then freeze them....kind of like food cubes without the ice trays. When you are ready to serve, just defrost a serving and, at the same time blend some fruit of your choice and then just mix it together with a fork.

Delicious and SOOOOO good for baby!

Choices

2009-10-15T08:59:00.000-07:00

It's that time of year again where big choices have to be made.

What to BE for Halloween?

A Giraffe?

A Pumpkin?

A Bumblebee?

Or something else entirely?

Something perhaps from another universe?

Stay tuned! (Just think old, wise and GREEN!)

Parenting.com

2009-10-14T12:37:00.000-07:00

Look who's in the Parenting.com "A Special Joy: Kids with Down Syndrome" Album #4...

Joaquin, 19 months

Be sure and enter your special little one too! We did it last year and I love that they do this every year in October in honor of Down Syndrome Awareness Month. So neat to see all the gorgeous kids from all over the country. Even more fun when you find one or two that you "know" from blogging!

More Alike Than Different

2009-10-11T12:23:00.000-07:00

I love this new campaign. Please take two minutes to watch it, I think you'll get a kick out of it!

October is Down Syndrome Awareness Month

2009-10-09T13:13:00.000-07:00

To All Our Blog Readers:

Please let us know if you have ANY questions in regards to Joaquin, Down syndrome, the Institutes program we are on, or anything related to our journey. We would be HAPPY to answer questions and help increase awareness and understanding of DS.

Thanks!
The Sanchez Family

Wordless Wednesday (Joaquin's Brothers)

2009-10-07T13:14:00.000-07:00

Thank God for big brothers!

What joy they give Joaquin. He looks for them first thing in the morning and there is definitely a void when they are both off to school. It's a sweet reunion for all three when they are reunited.

We love our three boys!

Baby Eczema?

2009-10-04T10:04:00.000-07:00

I'm wondering if Joaquin has a case of baby eczema.

He got a little rash on his chin a couple weeks ago and I had our pediatrician look at it and she said it was from his drooling.

Then, I tried a new fruit...pineapple and at the same time started using wipes to wipe of his face after his meals and the rash spread to above his lip and on the sides of his cheek.

So...thinking it was a food or contact allergy,I have been feeding him mostly apples, rice and sweet potatoes for a couple days to see if it would clear. Unfortunately it is still the same, if not worse. He wakes up and it's mostly clear but within a couple hours of being awake, it gets quite inflamed, red and is looking dry and cracked by the end of the day.

My baby boy's beautiful skin is no longer. Any advice? None of my kids have ever had eczema and I know how brutal it can be so I'm really worried.

Wordless Wednesday

2009-09-30T14:53:00.001-07:00

Feature in The Sacramento Bee News Blog

2009-09-25T13:52:00.001-07:00

This Saturday Joaquin will be featured in a special video presentation on a jumbo screen in the heart of Times Square in New York City. Every year, NDSS reminds the world in a big way about the gifts that people with Down syndrome bring to their communities, the 40-minute showing takes place each year on the morning of the New York City Buddy Walk® and is one of the highlights of National Down Syndrome Awareness Month.

NDSS receives thousands of photo submissions for the Times Square Video Contest. Because the Buddy Walk® promotes acceptance and inclusion of individuals with Down syndrome, the winning photographs feature children, teens and adults with Down syndrome working, playing and learning with friends and family.

Here is an article by Niesha Lofing, family and food writer for the the Sacramento Bee, about Joaquin. Click on the link below to read it. We were so thrilled to read this and it brought tears to our eyes, check it out!

Mom.me: Local toddler featured in national Down Syndrome awareness campaign