Guess What We Got?

The OFFICIAL T21 Traveling Afghan!!!




John Michael dropped it off yesterday and we are thrilled to have a few days to enjoy this amazing little blanket. So special!

Read more about this afghan and sign up if you haven't already. We will be passing it on to Baby Joey and then Miss Gabby. Thank goodness for the mid-August chill we've been getting here in Sacramento. Makes us all want to get cozy with the blanket!

Wordless Wednesday

Joaquin's favorite part of Speech Therapy at Jabbergym.

Do I Have Down Syndrome?

A few months ago, my oldest son Diego asked me a question that made me think long and hard about how much siblings can be affected by having a family member with special needs.

He asked me out of the blue..."Do I have Down syndrome?"

Me: "No you don't have Down syndrome, why do you ask?"

Diego: "I want to have Down syndrome!"

Me: "Why?"

Diego: "Because....(said with a sad tone in his voice)....I want to be special too."

Me: "Diego, you ARE special! You don't have to have Down syndrome to be special. We love you just the way you are. We love all of you. You are ALL special to me and Papa."

Wow.

Since that conversation, I've made an extra attempt to explain what DS is to Diego and to remind him that he is just as special as his brother Joaquin is and just as special as Mateo too. It's been an opportunity for me to be sure and check in with him. Now I understand how deeply this has touched him. It's true. Joaquin gets A LOT of special attention. Lots of different therapists come in and out of the house every week. Most are very welcoming to Diego but there is one therapist that prefers that the boys stay completely out of the room during Joaquin's session and that is really hard on the boys and on me. Joaquin is also a people magnet so he gets a lot of attention from family, friends, even strangers and this must be hard on the boys too.

Another interesting thing that has been happening lately, Diego will let his tongue rest on his lower lip almost as if he wants to look like Joaquin. He doesn't do it disrespectfully. It's a subtle thing he does when we aren't looking. It's like he is experimenting with it. I know that this is an attempt to get our attention as well.

The one thing that we have going for us is that Diego absolutely ADORES his brother Joaquin which is so beautiful to witness. I wish he felt the same way about his brother Mateo sometimes! But I can see that if I don't continue to watch the family dynamic that some resentment could grow and that's the last thing I want to have happen. I take extra care in making sure each of the boys gets lots of attention and special activities specific to them but it's hard sometimes because Joaquin is also the "baby" in the family so naturally he's going to get more attention just based on his birth order. Thankfully I'm a first born in my family so I know how Diego feels at times, but having a child with special needs in the family is very new to all of us. I would love to attend some workshops on this topic in the near future or chat with families who have been through this to make sure I do the best job I can in raising my boys to love one another and to each feel individually special. All of this without any resentment towards their youngest brother.

Just another reminder to tell our children, every day, with Down syndrome or not, that they are loved and they are SPECIAL.

i did it

"Just Do It"

Nike's hugely successful ad campaign has been telling us for quite some time now to just do "it".

It's about time the DS community came back with our own slogan. Our own ad campaign.

On our recent trip to Seattle, Joaquin was just learning to pull himself up to stand and he was SO proud of himself. All of us were hanging out and watching him try out his new skill when all of a sudden he starting laughing, cracking himself up and clear as day shouted "i did it"! (Hector added some appropriate music to the video clip of Joaquin's new words and he added a bit of crawling footage from earlier today for fun!)



I didn't believe it. I thought I was hearing things but then he said it again. And again. And again. Until we were all cracking up with him, half in disbelief and half in awe. Here he was, accomplishing another milestone and telling us how proud he was. "i did it".

He did "it".

And so did Avery.

And so did Bridget.

And so did Finn.

Nate did "it" too!

And there are hundreds more doing "it" every day.

Three simple words that mean so much. Accomplishments that are celebrated and cherished. All the simple little things and the big things too. First smiles, first steps, first words. Things we used to take for granted and never will again.

I took this small little phrase that means something so big and made a limited quantity of infant and toddler tees with the slogan on it.



My hope is to sell these tees for $21 each (in honor of Trisomy 21) and for every tee purchased I will buy a copy of the new book "Gifts 2", sign it with the name and/or blog of the child who the tee was purchased for on the inside cover (optional) and donate it to a local hospital, genetic counselor's office or pediatrician's office here in Sacramento. If I sell out quickly and there is a lot of interest, I will have more tees made and expand the effort. I have wanted to give back in some small way and I thought this might be a fun way to do it. We need to spread the word that our children are amazing! They can do "it". Maybe this really could be our new slogan. Our new ad campaign.

If you are interested in purchasing a tee, I have them in 3 different sizes (6/12 mo, 12/18 mo and 18/24 mo). Shipping is on me! You can order a tee by using the comments section here on this post just leave your email address and t shirt size and we'll work out the details. Or you can also order on my online business site Addy & Sam as soon as we get it up on the site.

Let's do "it".

No Pity Parties

Just the other day I met a new friend at a park with our babies and she asked me with frown on her face and a sad tone "Will he ever walk or run?" I told her OF COURSE! And he will probably play soccer, play t-ball or be on the swim team. Of course!

Sometimes people (myself included at times) want to focus on all the things Joaquin is not doing right now. Some people still feel pity for Joaquin. I think this is the hardest part of having a child with DS, when people feel pity or sorrow for Joaquin. So, I thought it was time to switch the focus a little bit. It's time to stop thinking about all the things he isn't doing or can't do right now.

Things Joaquin IS doing and CAN do right now...

move anywhere he wants to go and FAST
put himself in and out of the sitting position
crawl on hands and knees
pull to stand
play peek a boo
say mama, papa, nana, all done, bye ("buhh"), dog ("duhh"), grandpa ("gahpah"), ball ("bahh"), agua
eat at the kitchen table with the family
drink from a straw cup
wave bye bye and hello
sign "more" and "all done"
play ball
play on the drums, piano and maracas
smile, socialize, make eye contact and FLIRT!
get shy
gnaw on his teething biscuits
escape out the front door
get into cupboards he's not supposed to
put things in and out of containers
purposely put his feet in his mouth and grin when you say jokingly "Don't eat your toes!!"
rip his brother's favorite books
throw a small fit when you say NO
pull his lower lip up and frown when his brother takes something away from him
give kisses on command (watch the tongue!!)
push his brother away when he's had enough
laugh and giggle when you tickle him
splash and play with water
have 1/2 hour conversations with us in the morning
beg to get into the shower or bath whenever someone is in it
wrestle with his brothers
follow the dog
sleep through the night
cry when he is sad
screech with joy when he is happy

I'd say he is doing just fine...thriving actually!

HOT Stuff

Sacramento is HOT in the summer!

It was 104 degrees today. We've been spending a lot of time in the pool or at spray parks.

This is how Joaquin is looking these days. It's either this outfit or a diaper. Too hot for anything else!

Homemade Teething Biscuits

Vegan (Wheat Free) Teething Biscuits

Ingredients:
1 cup fruit juice
1 cup flour (any type)
1 cup rice baby cereal
3 TB oil (any type)

Directions:
Put all ingredients into a mixing bowl and stir together until well combined. Roll out on a floured board and cut into shapes. Bake for approximately 20-30 minutes at 350 F (175 C). These biscuits can be frozen for storage and your baby might even enjoy sucking on a partially defrosted one. The cooling on the gums will feel wonderful.

I plan on making these this weekend! I'm so excited. I've been searching and searching for a teething biscuit or cookie that meets the dietary needs of Joaquin. I've been to our local co-op, Whole Foods, our regular grocery store and I haven't been able to find anything that fits. This recipe is perfect. I plan on using a gluten free flour, not sure which one yet. I'll let you know how they turn out and whether or not the little man likes it. He's got four molars coming in at the same time. It's time to find something other than his fingers to chew on!

On Safari

We went on a safari the weekend of the 4th of July in Santa Rosa called Safari West. We rode on a jeep in an open wildlife preserve and got to see the animals up close and personal.


The boys loved it. Especially when one giraffe decided to come and check us out when we were on top of the jeep. He was literally a foot away from Diego's face. It was so cool!


By the end of the 3 hour tour, Joaquin was getting sleepy but once again proved to be an awesome travel companion. He was awake for the whole event and never once complained. It was a great family trip. Next time, we'll have to go and stay the night. How cool would that be?

Wordless Wednesday (4th of July 2009)

Nori

Joaquin continues to eat more and more variety and textures of foods. His absolute FAVORITE snack is nori. Yes.....indeed. He loves dried seaweed.

We break it up into little pieces and he readily opens his mouth and let's it quickly dissolve. It's a great way to get a "green" vegetable in him. As a matter of fact, it's Diego and Mateo's snack of choice as well.

Another fun snack we've discovered is fruit leather. All natural, organic, 100% dried fruit strips that I break into small pieces and Joaquin gobbles it up. He still continues to eat brown rice puffs as well so now we have a nice variety of easy to travel with snacks that don't spoil or require any special handling. These snacks and his straw sippy cup full of water are all we need and we are ready to go!

Joaquin is still officially vegan and I'm still breastfeeding a couple times a day. He has never had dairy, soy, meat, wheat, banana, nightshades, citrus or corn. He eats a variety of fruit (apples, berries, mangos, peaches, pears, plums) and vegetables (peas, spinach, squash, sweet potato, pumpkin, carrots, turnips, broccoli, beets) and he eats flax meal, brown rice, teff, coconut/olive/grapeseed oils, lentils, beans (kidney, black, pinto) and oats. He is thriving, healthy, has tons of energy and has a really gorgeous glow to his skin!

The only supplements we use currently are B-12 once a week, occasionally some probiotics and when I feel like it a multivitamin.

I highly recommend trying the seaweed. It might become your little one's favorite new snack!

Gifts 2

It's here! And ready for pre-sale at Woodbine House and Amazon.

I cannot wait to get my hands on this. I cannot wait to read it cover to cover. We are contributing authors in the book so we are especially excited to see it in print.

Gifts, the first book, was a life saving book for me in the early days of receiving Joaquin's diagnosis. I truly believe that reading Gifts helped move me quickly out of the grieving process and into complete joy and anticipation. We honestly feel that Joaquin is a GIFT and the book certainly was a gift as well.

To be able to give back to other families now in Gifts 2 is an honor. We are so proud of Kathryn Soper's work in collecting the stories and publishing these amazing books...these amazing GIFTS.

Don't you just love the cover photo?

What Do You Think?

I just want to get this one off my chest because it's come up quite a bit for me and it's my own personal battle or struggle, if you will. I wonder what other people think about this.

Here is the scenario. We parents all love to talk about the future of our children with our friends and their kids. Often we parents love to talk, joke, or imagine our son/daughter either dating, marrying, or going to the prom with our friend's son/daughter. This is very typical, fun and harmless talk.

Now here's my dilemma. When it comes to Joaquin, I find myself holding back from making these types of comments for fear of alarming the other parent in some way. Would it freak my friends out? Now, Joaquin is already betrothed to many adorable sweethearts in the "little something extra" club (wink, wink!!) but I have never made a comment to a friend if their child happens to be "typical." I know Joaquin is loved and accepted by my friends but for some reason I'm afraid to even approach this particular subject. In fact, I steer clear of this kind of talk when it comes to Joaquin. If it's Diego or Mateo, it's a totally different story.

Is this wrong? Is this being too cautious? Is this a silly thing to be thinking about? Am I being prejudiced? Am I limiting my child in some way? I don't know. If we are all about acceptance, then I shouldn't be worried about making these very innocent and fun comments about Joaquin with whoever pops into my head. Is it realistic to think that he will date or marry someone "typical"? I don't know...probably not. Is it possible he will go to a prom with someone "typical"? Probably. I think about the movie Mr. Blue Sky where a "typical" young man falls in love and marries a young woman with Down syndrome. I thought the movie was charming but unrealistic. I love the idea of it but somehow I just don't see it happening. Has it happened before? Am I way off base?

I wonder...

Anyone else feel like this sometimes?

Wordless Wednesday

Joey

Joey (a.k.a. Jo Jo) is getting big! Here is an adorable photo my friend Jennifer Ferrara took a few days ago at the park. We love taking care of Joey during the week and it's so much fun watching him grow and develop. He is SO strong and determined and he is such a sweet baby boy.

Mateo...An Old Soul

I heard the sweetest words from our little four year old Mateo the other day. It was one of THOSE days. A day when lots of thing went wrong. Stroller smashed into my car (no babies in it...thank goodness!), purse rolled off the top of the stroller into a filthy, murky, wet ditch (as a result of the stroller smashing into my car), stroller gets quickly relocated only to roll through some old...yikes!!!...vomit (or so it looked like). BLECH!!!! I'm quietly dealing with all of this while trying to unload Mateo, Joaquin and Joey out of the minivan in order to get to a Speech Therapy appointment on time in Midtown. I usually have it down to a science but this particular day was a circus act.

Then, in the quietest of voices and from behind me, Mateo is standing on the sidewalk apparently watching all of this unfold and understanding my desperation he says to me....

"Mom, I wish I was a grown up, so I could help you."

My heart immediately melted into a puddle on the cement. My sweet, soulful, gentle Teo. I immediately hugged him and told him how those words were the kindest words I had ever heard him say.

I love you Mateo, my sweet old soul.

Our Other Backyard

Thank goodness for the park down the street from our house. It's like our other backyard these days. Here is Joaquin playing with Mateo in the "tube" at East Lawn Park. Gotta love those smiles!

Rock-n-Roll

Last Saturday, I completed the Inaugural Rock N Roll Marathon in Seattle! It originally was planned to be a family vacation but in the interest of saving money we decided that I would take Joaquin (since I'm still nursing him) and go with my girlfriends.

We drove the minivan straight through from Sacramento to Seattle in a record 13 hours through the night. Joaquin was a champion passenger as were my friend Mary Ellen's two girls, Malia and Annalise. Mary Ellen, Michelle (my good friend and running partner) and I took turns driving and stopped 2 or 3 times for gas and snacks and the kids slept right through it all.

We stayed at Mary Ellen's sister's house in North Seattle and were welcomed warmly by the family which included little Kaylin and Anika. Joaquin was surrounded by the girls all weekend.



The day before the race, Michelle and I toured Seattle. It is one of my favorite cities and it was a gorgeous sunny day. We went to Pike Place Market and the "Original" Starbuck's coffee house. Joaquin was thrilled with the sights and sounds of the busy city.






Race day was perfect as well. I felt prepared and ready for the run. Within the first 7 miles of the course, I saw two bald eagles on Lake Washington Boulevard. Amazing! At mile 20, Mary Ellen and Joaquin were waiting for me but I never saw them or heard them...I must have really been in the "zone". I feel terrible that I didn't see their smiling faces and I know it wasn't easy for them to get there either. Joaquin spent the rest of the day with Mary Ellen and her sister Suzie at the Seattle Children's Museum as I raced my way to Qwest Stadium for the finish of the 26.2 mile run. It was a perfect day and a perfect run for me.

The following day we packed up the minivan and headed home to Sacramento. It took us much longer going home after a stop in Portland for lunch and Ashland for dinner. But once again, our kids proved to be much better passengers then us adults and were absolute angels the whole way home.

It was a wonderful weekend filled with good friends, good food and great accomplishments!

Kisses

One of Joaquin's most favorite things to do lately is give kisses...sweet, wet kisses. For the past few weeks, he has really been pouring out the love.

Here are a few photos at the park this week where all he wanted to do was kiss on baby Joey. It's adorable! Even Mateo wanted in on the action.

New Fiscal Year

I got the dreaded call today from Joaquin and Joey's physical therapist. All therapies are cancelled today since she has not received authorization yet from the Regional Center for the new fiscal year which starts today July 1st. Our PT feels she will get the authorization and not to worry just yet but I can't help but be concerned. These boys needs their therapies.

I will be sending my letter to the State of California today. This is not good.

Blueberries!

Blueberries are a BIG hit in our family. We can't keep a container around for much longer than one sitting. Add one more person to the mix!

Joaquin LOVES blueberries and he ate them in halves. This is his first fruit that we haven't had to puree or mash. I just cut them up into halves and he chewed each one up. So fun! I think we're on to something here. Maybe my Vita Mix won't be needed as much anymore. Very exciting!

Philadelphia Postponed

We've decided to postpone our revisit to the Institutes. We probably won't be going until November. We were originally scheduled to go in August but after a conversation with our advocate, we decided it would be best to wait. I had a great conversation with Susie, our advocate, and I actually felt better after talking to her. I was completely honest with her about how little we have been able to accomplish with Joaquin over the past few months in terms of our goals.

We've been busy and honestly a lot of Joaquin's program has not even been started. There is nothing worse than writing those words. I feel like I am failing him as a mother right now. He is still getting his Early Intervention therapies 5x/week but there is sooooo much more that I could and should be doing with him. Talk about mother's guilt.

When I get down to really looking at my schedule, it is pretty crazy busy but there IS time to fit in his program. However, I'm lacking the energy and enthusiasm that it takes sometimes and I usually want to spend my free time loving on Joaquin not "working" with him. Again, it's not supposed to be WORK and in fact, the program is supposed to be fun and enjoyable but I just feel like I'm overwhelmed with it. With the diagnosis. With the prognosis. With the responsibility. With the paperwork. With everything.

There are days when I want to throw in the towel. I want to forget about the Down syndrome and just know Joaquin. I want to accept him for all that he is right in this moment and to stop worrying about the future or how much his brain is stimulated or developed.

This job called parenting is exhausting.

So, I will take Susie's advice and start from the beginning. Taking it one step at a time. Starting with one aspect of the program and trying to accomplish it, then slowly adding more when I can. Any little bit is better than nothing. And I will remember that Joaquin is thriving no matter what by living in an active, stimulating and loving home. Thank God for that.


Here is Joaquin at the end of the day. Exhausted...just like Mama!

Roll Call

Are you coming to the National Convention this summer in Sacramento? Do you blog? If so, please check out DS BLOGGERS and get your custom made badge. I can't wait to meet everyone in person. I'm so excited!

Honey Bear

Honey Bear....I love you!!!!

Joaquin can drink from a straw! Yahoo! Thanks to the Honey Bear Sippy Cup. We are so excited!

It just took being consistent. We've had this thing around our house for a long time but I just didn't give it the effort and consistency that Joaquin needs. After one week of working with it, basically squeezing the bear so that Joaquin knew it had liquid in it and then waiting for him to close his mouth around the opening, he figured out how to sip a straw!

Another milestone to celebrate! One step closer to weaning!

A Little Dream of Mine

Have I ever mentioned that I have this dream of becoming a yoga instructor for special needs children... a kind of mommy and me program? I have this dream and vision of Joaquin as my model as a child and then, as he grows, my business partner. And then one day teaching his own classes and starting a little franchise. I love my little yoga dream.


Here is a photo of Baby Joey and Joaquin hanging out together. So cute!

Dancing Ladybugs

A really cool thing happened yesterday and I just have to share.

I was going through our digital camera and came across a cute video of Joaquin playing with his new Dancing Ladybug music box and I was watching and listening to it on the camera with Diego and Mateo on our couch. Joaquin was at my feet and seemed to be listening too. Then, he went crawling off with a purpose and crawled half way across the living room floor and around to the fireplace where we keep a lot of his toys. The Dancing Ladybug music box is one of many toys stored there and Joaquin went directly to it and started to play with it. It was AWESOME! He completely understood what he was listening to on the camera and decided that he wanted to play with it after hearing it.

Isn't that cool?

Here is the video we were watching...



There is a very sweet story about the Dancing Ladybug music box. A few weeks ago we were visiting with our dear friends Natasha and Stephan in San Francisco and they have a beautiful daughter named Avila. We had the pleasure of hanging out and playing with the kids and Joaquin discovered Avila's music box. Natasha wound it up for him and set it down and it was so precious. Joaquin watched and listened with such focus. Then he did his little head tilt and started doing his little wiggle dance to the music. It was a sweet moment and I had thought to myself that I would have to find something like that for Joaquin. We left San Francisco and our friends and it wasn't until the following day that I needed to get something out of my purse. Lo and behold, in my purse was the Dancing Ladybug music box. Natasha and Stephan had somehow snuck it in my purse so that Joaquin could have it. Thank you again for such a lovely surprise. Joaquin LOVES his music box from Avila.

Signing Times

Joaquin is communicating via sign language and it's so darn cute.

His favorite is "more" and "all done" always followed by his clapping applause and huge grin. He has other ways of communicating that he wants "milk" and it's more of a head tilt towards mama's chest rather than the actual hand sign for milk. He is also verbalizing more with purposeful sounds. He will also dance on command. His favorite is when he has had enough of his brother Mateo and he pushes him away with a big grunt sound that I'm sure will become "NO!"

It's wonderful to see his communication skills blossom and I'm hopeful that he will be able to make his needs known by signing before he can talk. We are also supposed to be using a communication board with the words "yes", "no", "maybe" and "I don't know" on them but we haven't gotten in the habit of using this yet. It's not as easy to incorporate this into our daily routine. Signing is just so easy and natural for me but I can see where having the ability to use the communication board would also be very helpful as he gets older.

Here are some photos of Joaquin playing and cheering, one his favorite things to do these days!

Wordless Wednesday

Baby Food, Inc.

On Sunday, I spent the day with Lisa and made baby food for our little boys. It was so much fun. I don't know why I never did this with my other two guys! It was much easier than I had imagined. Here is Lisa's post with pictures.

Could be an exciting business adventure?!?

Thank you again Lisa for showing me the ropes and how fun and rewarding it can be to make homemade babyfood. Now I just wish I had a bigger freezer!

"Human beings are not better off without Down syndrome."

"I live in a nice house in the country, I keep five horses and as a family we are comfortably off. For all these things people envy me. But I have a child with Down’s syndrome and for that, people pity me. And I am here to say: wrong. Wrong, wrong, wrong. I am not to be pitied but to be envied."

These are some quotes from an article published in the UK Times by sportswriter Simon Barnes back in November of 2006. It's titled I'm not a saint, just a parent.

It's written with that great British humor and wit. If you get a chance, please read it. I love it. Thank you Sharon and Laurie for sharing it!

Three's a Charm and Four is...

Crazy?!?

No way!

We have a new baby in the house!!! Well, at least for 4 days out of the week.

I am currently babysitting a 12 week old baby boy named Joey and he is the cutest, sweetest thing! He is so tiny next to Joaquin. All of a sudden my baby boy looks HUGE! Joey also happens to be blessed with a little something extra so it's my privilege and pleasure to help raise him while his mom and dad are working. I hope this is the beginning of a life long friendship for Joaquin and for our families.

It has been a really smooth transition so far and the boys love little "Joe-Joe." When Diego wakes up in the morning, he searches the house to see if the baby is here yet. Mateo said he loved him today. Joaquin is mesmerized by him. I will say the biggest challenge is loading and unloading the car, thank goodness I have a minivan!

We look forward to watching baby Joey grow and develop and thrive. He's ADORABLE. Check out his huge eyes! He's so inquisitive and alert. He's even rolled from his belly to back for me on his first day here and it looks like he is ready to roll from his back to his belly next. Go Joey!!!!!



I was secretly hoping that by taking care of Joey that my urge for more babies would be cured. I'm afraid not! Going from 3 to 4 boys is not so bad! Bring it on!.....No worries Hector....I'm all talk!

Our Own T21 Afghan

It came in the mail yesterday.

Our very own T21 Afghan made just for Joaquin.



He loves it and so do I. The colors are gorgeous, they compliment his nursery bedding (and his eyes!). Thank you so much Chandos for sharing your talent with us. We love it and look forward to staying cozy and cuddling in it for years to come.






We can't wait to get the "official" afghan sometime this summer.

ONE BLANKET. MANY STATES. MANY COUNTRIES. HUNDREDS OF FAMILIES. ONE COMMON THREAD!

Happy Mother's Day

It was a perfect Mother's Day. Joaquin took his very first bike ride today in the chariot next to Mateo and pulled by his Papa. Mama got the afternoon off to ride with her girlfriends and view the David Lubin Garden Tour in East Sacramento. Later on, after dinner with Nana, Grandpa and Aunt Sarah, we went bowling. Another first for Joaquin. He loved the music, the sounds, the bowling ball, the pins, everything. Joaquin stayed up way past his bed time, red eyes and all, so as not to miss a thing! It was a really full and beautiful day. Thank you God for blessing me with my family. Being a mother has always been a dream of mine, something I knew I always wanted to be since I was a very little girl. Today is a great reminder that I am living the life I dreamed of...I'm a MOM!