On February 2nd at 4:59 AM, our third beautiful son Joaquin Andres Sanchez was born. On May 2nd at 4:59 PM, his three month birthday, we learned that Joaquin's cells have the presence of an additional third chromosome 21 or "Trisomy 21" also known as Down syndrome. Join us on our journey as we discover that three is definitely a charm.
It's time to stop using the "R" word (a.k.a. "Retard"). Educate yourself, educate your family, educate your friends, educate your neighbor, educate a stranger. The hurtful and casual use of this word needs to stop.
Why?
Because it hurts him...and millions of his peers. Please spread the word to end the word. Do it for Joaquin. He deserves respect.
We have a big flirt over here! Joaquin has discovered that he can charm the masses with his smile and coy head tilt. Oh my gosh is it ever cute. Then, after he reels you in with his grin, he'll start wowing you with his signs...waving, followed by some claps, and then again the smile. I have got to get this stuff on camera!
Today is World Down Syndrome Day...3/21...in honor of the three copies of the 21st chromosome.
Today, there is still a lot to be done in terms of advocacy, education and acceptance for children and adults with "designer" genes but we have come so far.
I watched a show on HBO called "Educating Peter." It's a documentary about a boy with DS who is integrated into a public school in the 3rd grade back in the early 90's. It actually won an Academy Award for Best Documentary Short Subject in 1992. I look forward to watching the sequel "Graduating Peter" which continues to follow this boy through high school. If you have HBO, check it out. There were parts that were very difficult to see and watch but the end result is extremely heartwarming and positive. We've come a long way since the early 1990's even.
Today, I have fewer days of worry or fear or sadness in regards to Joaquin's diagnosis. I can feel with each passing day, week, month and almost a year that I am growing stronger and I am honored to be on this journey. I feel blessed and special. I feel loved, supported and cared for. I am grateful for my family and friends. I appreciate my husband and I am thrilled with our family of three boys. Joaquin is going to reach his potential and love his life and that is all that matters at the end of the day.
We have tons of activities going on all the time and it seems as if my minivan is a gathering place for preschoolers and kindergartners these days. When I pick up Diego from school, I usually park right outside the school and have the side door open so I don't have to get Joaquin and Mateo out each time I go. It's often that a few kids will jump in to say hello to all of us in the car and look at the baby. Recently we've also been doing a lot more playdates and carpools and there are lots of kids in our lives. This is where my question comes up.
Joaquin does not have a strong tongue protrusion but often when relaxed, which is usually the case when he's in his car seat, his tongue will stick out. Also, lately, he is teething and it seems like his tongue is one of his favorite things to play with in his mouth. The number one comment made by kids when they see the baby is "Why is his tongue sticking out?" which is followed by laughter. Now, this isn't usually taunting laughter. I think it's fairly innocent. I believe it's because every school aged child has been told not to stick their tongue out so when they see a baby doing it, it's fascinating and hilarious.
What do I say to that? How do I explain? Is this an opportunity to educate and inform? Or do I continue to do what I normally do which is say something like "oh, he's just relaxed and his tongue sometimes sticks out" or "he just likes his tongue" or "isn't he funny?". I find myself struggling with how to give an appropriate response. I feel like this is just a small "taste" of what is yet to come as far as managing other people's reactions.
Even today, I was on campus at our local state college. Joaquin is a guest patient for a Mock Physical Therapy Clinic for the students once a week. I was walking to the clinic and enjoying the sun and the breeze with Joaquin in my arms and he was having so much fun with the wind. He was smiling and sticking his tongue out almost as if to taste the air. A couple of young girls walked by us and caught a glimpse of him and smiled but as soon as they passed by I heard them giggle and say "did you see his tongue sticking out?" It broke my heart a little bit.
We celebrated St. Patrick's day yesterday as a family. We took photos, we shot silly videos, drank beer (mama and papa only!) and danced after dinner. We remembered Grandma Eleanor in Heaven. One of my favorite poems is an Irish blessing. I still keep the little card we got at Grandma's wake and it says:
May the road rise to meet you.
May the wind be always at your back. May the sun shine warm upon your face, the rain gently upon your fields and until we meet again,
A comment I made on my last post has got a lot of people asking me why we gave up dairy. It was one of the first recommendations made to us by the professionals at the Institutes. They have a whole day devoted to achieving physiological excellence during the lecture series and nutrition is a huge part of that. They have been witness to some amazing transformation in their children based on the elimination of dairy alone. There are way too many reasons why we decided to give up dairy and I really don't want to start a debate on my blog about it because that's not what this is about. All I can say is that I have done my research and I feel absolutely confident in our decision to eliminate dairy as much as possible from our diet. Again, we slip up at times and my older boys occasional have it at other people's homes or at school but at our house, you will not see any milk or dairy products in our refrigerator.
For anyone interested in the science behind the reason why "dairy is scary", I urge you to read The China Study by T. Colin Campbell. It is one of the best books I've ever read. It changed my life. It is such an important book. I believe that this should be required reading for every health professional around the world, especially nutritionists and doctors who deal with cancer, heart disease and diabetes. PLEASE, go out and buy this book! Check it out at the library if you want to save money. If you don't have time to read, get the book on tape and listen to it on your commute or on your next road trip. It is a remarkable book.
Joaquin discovered his shadow this past week now that the sun is shining again! Here he is on my parent's deck. He loves to wave his hands and watch his shadow move. It's simply adorable.
The National Down Syndrome Congress' 37th Annual Convention is going to be right here in my own backyard....SACRAMENTO!!!! I am so thrilled. This will be our first experience and I am sooooo looking forward to it! Our own local DS chapter, the DSIA, will be helping with the event and they need approximately 300 volunteers from the community.
So....mark your calendars!!! The dates are July 31st- August 2nd, right here in downtown Sacramento at the Convention Center. Anyone who lives in the area and doesn't plan on attending the conference should PLEASE volunteer to help out. For anyone interested in volunteering their time, please go to Volunteer Sign Up Form. We want the experience in Sacramento to be a super positive one.
To all my fellow bloggers, I can't wait to meet you! Please let me know if you are coming into town for the conference and if you have questions about the area, places to stay, places to eat, family friendly adventures, etc. I would love to host a little get together to meet you all, so as it gets closer we should all get in touch with one another. How fun would that be?!?
Joaquin has a crawling victory! He has achieved his goal of crawling 30 meters a day. He is also crawling over obstacles like rugs and piles of clothing. This is one of our goals for his Intensive Treatment Program at the Institutes so I have emailed them with the good news and look forward to their response and whatever new goals they will have for him. I'm sure it will be an increased distance with the goal to creep on hands and knees....we'll see!
Another one of his goals is to stand assisted for 30 seconds. We put him in a sit position and then after he grabs our thumbs, we pull him up into a stand position. He has been able to do this for quite some time. Often times, he'll go for up to a minute holding on to our thumbs. So, we just try it every day, a couple times per day to build his endurance.
This weeks People Magazine has a great little article about a dance class for children with Down Syndrome. It is such a positive, lovely article with some adorable pictures of boys and girls dancing and posing. I LOVE it! Check it out if you can.....and look for the Joaquin look-a-like! There is a little boy on the opening photo that looks like Joaquin in about 8 years...DARLING!!!!
Things are looking up. Joaquin is still battling some congestion but after two rounds of antibiotics back to back, his ears look good. He is eating again and seems to be in the midst of a reawakening of his senses and his abilities.
It's funny how life is so up and down. One day is great, the next day not so much. Bumps in the road. Tripping on our own feet as we make our way down this unknown path of raising a child with special needs. One thing is for sure, I am completely exhausted and worn out at the end of the day but I have an endless reservoir of energy when it comes to Joaquin. I don't know where it comes from but I'm so grateful for it.
We got an email this week from our local DS organization about a Spanish speaking couple at a nearby hospital who had a baby with DS and they were looking for a peer to talk to in their native language about their fears and concerns. Hector was generous enough to take the time to call them and help them through their initial shock at the hospital. We might be meeting with them this weekend at the hospital as well. It feels good to help other parents out but I found myself worrying about them and worrying about the baby. Would they get all they need for their child? Would their language barrier hinder them in getting all their benefits and services? They live out of town and I'm not familiar with where they live so I just hope and pray for them and their child that they get what they need. I need to find out if the books that were my lifeline are published in Spanish....Gifts, Road Map to Holland, Expecting Adam, etc. I am stressed about their situation and want to help more but I have to take a step back and trust that there is a system in place that will make sure they are guided on their path. We can only do so much. Our plate is pretty full.
Joaquin has a full schedule these days. We've taken a step back on the Institutes program while he's been sick the past 5 weeks so we will start that back up little by little this week, adding more and more of his program as he feels better. In addition to the program we do at home, he receives Physical Therapy twice a week, one time at home and one time in the water. He receives Occupational Therapy one time a week. He receives Music Therapy one time a week. He receives Speech Therapy once a month and Hector and I are currently taking a "Hanen Method" class once a week that is teaching us new ways of communicating. It's quite busy. Borderline crazy busy when you add in both boys school schedules with drop off and pick up, Diego's after school art and science classes, Diego and Mateo's gymnastics classes and T-Ball practices and then Diego's swim team starting up at the end of the month....oh yeah...and mom and dad training for a marathon in June.....oh my goodness!!!
Joaquin is beginning to eat again....thank goodness!!! He is also starting to use his index finger and thumb to pick up his brown rice puffs on his high chair tray. He hasn't figured out how to bring them to his mouth but he sure loves picking them up and dropping them all over the floor. These puffs are great and a perfect solution since we can't do Cheerios yet due to the wheat in them. Despite his congestion, Joaquin looks great these days. He looks more and more like a big boy every day. He's still such a baby but I can see him coming into his own. It's so very exciting.
I'm a bit frustrated right now. Joaquin seems to have taken a step backward with eating solids. For a short time, he was doing great and eating solids about three times a day, about 16-20 ounces. Now, he is barely taking in a few ounces of solids a day.
He will open his mouth, making chewing movements with his mouth and then happily spit it out or let it drool out of his mouth. He does this all with the biggest grin on his face which is adorable but I'm still frustrated. He was doing so well before he got his ear infections.
Maybe he's teething, maybe he still has some residual pain from his ear infections, maybe his stomach is upset from the antibiotics that he's still on. Who knows?
He still nurses like a champ and we will continue to do this until he can eat solids consistently but at this rate, I feel like he'll be nursing forever. I know I need to be patient but feeding children is one of those basic needs things that a mother feels completely responsible for and right now I feel like I'm failing.
So....I'll keep trying. Every day. And I'll keep wiping up the green beens that have been sprayed all over my clothes, his high chair and the kitchen walls. I know he'll figure this out. Eventually.
Joaquin has been getting around lately by army crawling or what his brothers call "inchworming". He gets everywhere he wants to and it's definitely time to babyproof the house. He LOVES the bathroom....must be the tilework in there. If he hears the shower, he wants to be in the bathroom. This baby loves the water. He loves hanging out in the boys' room too (there is a lot of action in there) and if there is a cord in the house, he's got it...hence the need for babyproofing.
He's mastered movement for the sake of transportation and it's so exciting for us. We were able to take down the ramp and reconstruct his nursery. He doesn't need the ramp to motivate him to move. Yahoo!
Then, just this week, the week of his one year birthday, he is getting up on HANDS AND KNEES! He hasn't actually creeped this way but it's oh so close. He will get into position and rock a little bit and plop down again. The fact that he is lifting his belly off the ground is terrific.
With his first birthday also came Joaquin's first official illness. He has had two ear infections, two doses of antibiotics and about 3 weeks of interrupted therapy. Poor baby! It seems that the tubes that were placed a few months ago were a blessing and a curse. He can hear now with no problem but now he is predisposed to infections. Bummer. Since he's been sick, he has been sleeping a bit more than usual and has not been eating as much but this hasn't stopped him from continuing to develop. Our goal with the Institutes is for him to move 30 meters a day, and I think we'll be calling them in a week or two to say that the goal has been achieved. We aren't due back until August so we are THRILLED to have to revise his physical goals ahead of schedule.
Every day seems to bring some new development in Joaquin. He is more social than ever, super giggly, has discovered his yelling voice (he's gotta keep up with his brothers somehow!!) and he is reaching out to his favorite people with his arms up in the air.
Here are some photos of Joaquin on his actual birthday trying his first ever vegan carrot cupcake- bought at the local co op since my version of it completely flopped one hour before the party started. We celebrated with our family and a small group of close friends at our local pizza parlor, Luigi's by the Slice, and ordered the "Joaquini Special" (a no cheese, pesto, veggie pizza), and Hector showed a slideshow of our year with Joaquin on the big screen. It was a wonderful night to celebrate a wonderful year.
This last photo is of Joaquin in his PJs right before bed playing with the strings on his balloons. He was a very happy boy.
I must share this story, this true story, that I found on a fellow bloggers site called "Bridget's Light" living in world of possibility. This story written by Candee a couple years ago is a perfect illustration of how we can change the world with just changing our perspective. Here it goes....
A Story about My Two Daughters
How to Live in the World of Possibility
By Candee Basford
My first daughter was diagnosed with Down syndrome soon after she was born. Her language is delayed. Her abstract thinking abilities impaired. She is easily distracted and sometimes refuses to follow or listen to directions. She has some autistic-like tendencies. She has a bilateral hearing loss. Hearing aides have been recommended but she refuses to wear them. She has an uncorrected vision of 20/200 and a corrected vision of 20/60 at a distance. She is highly farsighted with nystagmus. She can be extremely stubborn and sometimes makes inappropriate comments. She can perform some functional tasks but has trouble with basic tasks like counting money and making change. She can follow simple cooking instructions. She can make her bed.
My second daughter is a sophomore in college. She is majoring in science. She loves anatomy and physiology, biology and anything connected to science. She loves to read but because of a vision loss she needs to take frequent breaks. She has a hearing loss so it helps if she can see the speaker and keep background noise to a minimum. Recently, she has become very interested in sketching portraits. Because of this new interest she is taking a course in advanced drawing. She is popular – the life of the party. She loves to flirt – in fact, her senior class in high school voted her most flirtatious. She has many friends. She has the ability to make other people feel welcome and loved. She is persistent, loves having fun and has a great personality. She loves to dance, travel and write to and receive letters from friends. She dreams of starting her own rock band.
The story of my two daughters illustrates the power of our words and our perspectives. It illustrates the power of the scientific processes and the labels we continue to use to diagnose, predict and sort people.
How? Both stories are about the same person, my daughter. The stories “differ in the way they are constructed – in their purpose – in their consequences – and in the assumptions they shape.” (O’Brien & Mount)
The story about my "first daughter” was constructed from exact words and phrases found on my daughter's school and employment related documents, written in the language of professionals, educators, psychologists and job specialists. It tells what she can’t do, won’t do and why. In this story, she is in need of repair, and thus in need of lots of professionals to fix her. The purpose of this story, in part, is compliance with federal and state regulations. The first consequence is that we (and the rest of society) accept the story as true and begin to adopt the language and beliefs and practices. Once that happens, the sad consequence is segregation, a client’s life, a planned life surrounded by professionals. The assumption in the story about my first daughter is that she is needy, broken, difficult and – most important – that her life should be safe and predictable surrounded by the service system.
The story about my “second” daughter was constructed from love, experience and by paying attention to gifts. It is told from the perspective that my daughter has immeasurable capacity once she has a valued and connected life in her community. The story about my second daughter is shaped (and lived) from a capacity perspective. This story is told in “context” of a life connected to others, a life that unfolds in exciting and unexpected ways precisely because of the many relationships she has. The consequences of this story are community and risk taking and surprises. The consequence is citizenship. The assumption in the story about my second daughter is that she is person who has capacity, interests, gifts, and contributions especially when her life unfolds in the presence of and participation in community.
The story of my two daughters represents two different worlds – the world of measurement and the world of possibility. Often, as my daughter grew up, I felt the overwhelming gravity of the world of measurement, pulling her toward specialized services and segregation with the promise of safety, and simplicity, and repair. In the world of measurement you get to know others by measuring and comparing. But it is the world of possibility that I find most powerful and promising.
The story about my second daughter is the story of possibility. It is the NEW story that we must learn to tell. It is the story told (and lived) from a capacity perspective, from a community perspective. We can learn to tell this NEW story by first examining our own perceptions and advocacy efforts. We can learn to tell the NEW story by listening, seeing, asking, discovering and taking action in the direction of gifts and capacities. We can learn to LIVE the NEW story by supporting rich relationships and taking actions that lead to more inclusive opportunities in our schools and in our communities, for it is these rich inclusive and ordinary experiences that will yield the context necessary to live in the world of possibility.
Happy Birthday my love. My baby boy. You are one year old today and I remember the day you were born so clearly. It has been one amazing year.....so quickly it has passed yet so much has transpired that it feels like a lifetime ago.
When I look at this picture of me carrying you in my belly, I can't remember who I was then. I have changed so much as a result of your birth. So much for the better. You bring out the best in me and continue to challenge me to look inside myself and find the truth. The truth and beauty of imperfection. The sweet surrender to simplicity and the simple joy in the here and now.
Your presence is our present....our greatest gift. Thank you for blessing me, your dad and our family. You are so loved.
1. Your smile. 2. The color of your eyes...a combo of gray, blue and green. 3. Your eyelashes...black and slightly curled. 4. The way you light up when you see your brothers. 5. When you reach out your arms to me. 6. When you play pat-a-cake. 7. Your soft belly when I kiss it. 8. Your giggle. 9. Your wrinkled palms and soles of your feet. 10. Your starfish hands. 11. The way you inchworm around the house. 12. When you tap your toes on the floor. 13. When you wave bye-bye! 14. Your baby chatter. 15. When you dance to the music. 16. Your sweet disposition. 17. When you get grumpy. 18. The way you tuck your hands and feet under us when you sleep in our bed. 19. When you fall asleep on my shoulder or on your Papa's chest. 20. When you squint at the sun. 21. Your soft fuzzy head and the way you tilt it when you are shy. 22. Your chubby cheeks. 23. Your button nose and your two tiny sharp teeth. 24. Your wet kisses and sweet baby breath. 25. Your gentle soul.
Baby, I like you so much because you are so cute and fuzzy. I am happy to be your big brother. I like to play with you and put your toys in front of you so you can crawl to get them. I like to call you “Softy” because you are so soft. When you grow up some day, I’ll miss you as a baby because you are so cute. When you are 5 years old, I’ll be 11! I want to teach you how to play soccer, basketball and baseball. I love you very much.
A moment of sadness. It was a very quick fleeting moment but I had it nonetheless. I'm not sure what it was exactly but I felt it and then quickly it was gone.
I attended a preview music class at our local Gymboree. I did many of these types of classes with Diego and Mateo when they were young and it was a fun way to meet new parents and babies around the same age. This was my first time taking Joaquin to a formal class setting where I didn't know the teacher or at least one parent in the group. I am a member of a local parent's group in town where I attend lots of different play groups and events with parents and children that I know quite well but I wanted to try something new with Joaquin, to take a step out of my comfort zone.
This Gymboree music class was unchartered territory for me, a brand new experience for the two of us....our first step toward full inclusion. Why not take him to a "typical" music class for a baby his age? I signed up for a free preview class while Diego and Mateo were both in school. It was a great class and the teacher had an amazing voice. At the start of the class, we sat down to smiling faces all around, lots of cute babies and moms. The teacher started off with a welcome song. It was then that I felt a pang of emotion. I began to tear up and I'm not sure why. I would call it a moment of sadness but maybe it was just a moment of all sorts of emotions wrapped up into one....fear, anxiety, sadness, shyness, pride, hormones? It's moments like these where I am faced head on with the reality that I am on a different journey than most of the people around me. It can feel very lonely. On the one hand, I want to include Joaquin in as many of the same experiences that I participated in with Diego and Mateo and then at the same time, I see a benefit to attending classes or events surrounded by parents who understand our situation and are "walking the same walk" as I am with their own special children. I can see how both scenarios could be beneficial.
Throughout the class, Joaquin was mainly interested in looking at me, watching my face. So I just immersed myself in the moment and it was as if it was just the two of us in the class. Occasionally a mother would ask me "How old is he?" or "He's so cute" and I would return with my own curious questions about their little ones but otherwise it was a special time for Joaquin and me. Focusing in on Joaquin grounded me and I felt more stable in my emotions....I was able to hold it together but a very small part of me just wanted to get out of the room and back to our comfort zone. We stayed and we ended up having a wonderful time. We focused on the moment and living it. The here and the now.
When I try and get to the root of what my feelings were during the beginning of class, it's really hard. I think I've been living in sort of a protected bubble this past year. I've surrounded myself with my support system of friends and family and neighbors, even fellow bloggers, and it has all been a very safe place to be. As I start to venture out into the world and as I take the steps that need to be taken for Joaquin, I'm a bit afraid of what might be out there. I'm afraid of the ignorance and the cruelty.
But maybe the tears that started to well up in me as the Gymboree class sang out Joaquin's name and we sat there, the two of us happy and healthy and living our lives, were also tears of hope. Hope that perhaps everything will be o.k. We were taking our first baby steps together.
Joaquin was baptised on December 21st at Sacred Heart Church in Sacramento. Many of our friends and family were with us to celebrate this special day. Jose and Virginia are dear friends of ours and we are so happy they agreed to be Joaquin's Godparents. Hector and Jose have been friends for a long time when they met in Mexico City. They are a very special couple, so full of love, and they have always been so kind and caring to all of our children.
Joaquin wore a baptismal gown that was handed down by my Aunt Giovanna from Italy. It is over 50 years old and was handmade in Italy. All three of our boys were baptised in it. It's the only time our boys have worn a "gown" and all three of them looked beautiful in it. Little porcelain dolls.
We had a beautiful brunch after the ceremony at my parents house. Even with the rain, it was a perfect day.
We are so grateful to God for giving us the gift of our son Joaquin.
Jose (a.k.a. Pollo) and Virginia, Joaquin's Godparents.
Joaquin ready for his big day and wearing his cross from Pollo & Virginia.
Joaquin is waving bye bye and it is the cutest darn thing you've ever seen!!!! I will try and catch it on camera and share it here on this blog. Oh my gosh, it makes me want to cry it's so sweet.
I have to hold his arm up for him most of the time to help him focus on waving but with lots of practice it's coming easier and easier for him. I'm so proud! I think he's proud of himself to, you should see the grin on his face when he does it.
Kathryn Soper wrote a memoir about her first year mothering Thomas, her son who has Down syndrome. It's titled The Year My Son and I Were Born, we can't wait until it comes out in March. Here is a little promotional montage she put together. Kathryn Soper is the mother behind the "Gift" book and "Gifts II" that is coming out later this year or early 2010 which one of our essays is included in. Very exciting!
Once again, a fellow blogger has posted a subject that I think about, talk about and write about all the time with people. Please see this post for a most amazing look at the topic of prenatal testing- question of life or death. Malakai's mom takes the words right out of my mouth. I was in tears after reading it.
Just the other day I got an email from a friend who wanted to know more about the startling statistic that I've written about in the past....that 90-91% of pregnancies are terminated when a diagnosis of DS is given after an amnio. This friend of mine asked if the statistic is slightly skewed by the fact that most people who get an amnio are more likely to terminate anyway, hence the reason they are having the amnio. It's a good question and makes some sense but it's still horrifying. I believe this is one of the biggest areas of discrimination still remaining in our society. Life or death decisions are being made based upon a diagnosis that is hugely misunderstood. Please look at my Joaquin. He is the child being aborted.
I also have friends that have brought up the fact that maybe not every parent is equipped to handle a diagnosis of DS therefore it is in the best interests of the child that he be aborted rather than have parents that are afraid or incapable or just plain don't want a child with a disability. I really don't know what to say to that. Like Malakai's mom mentions in her post, what if your child is born "perfect" but suffers a trauma at birth that leads to brain damage? What if your child is hit by a car and will never walk or talk or is now mentally disabled? Are these parents that would have otherwise terminated a child with DS going to fail as parents now? Probably not. I would hope they would rise to the occasion and do what was needed for their hurt child because it is their child. Right?
What if they develop a prenatal screen that tests for autism? for depression? for ADHD? for bipolar disorder? for leukemia? for diabetes? for obesity? for breast cancer? the list can go on and on. Would it be ok to abort based on this information? Where are we going as a society with this kind of testing? I cringe to think of where we are headed.
I am passionate about this topic. I feel moved in ways I cannot explain to reach out to the world and make a change. I don't know how I will do this but I know that I have to. Joaquin is the most amazing child and has every right to be here. Please tell me, what human being is perfect? who would want to live in that world anyway.
My sister in law, Jennifer, just emailed me this creed and I think it explains it all....
I believe that diversity is a part of the natural order of things—as natural as the trillion shapes and shades of the flowers of spring or the leaves of autumn. I believe that diversity brings new solutions to an ever-changing environment, and that sameness is not only uninteresting but limiting.
To deny diversity is to deny life—with all its richness and manifold opportunities. Thus, I affirm my citizenship in a world of diversity, and with it the responsibility to….
Be tolerant. Live and let live. Understand that those who cause no harm should not be feared, ridiculed, or harmed—even if they are different. Look for the best in others. Be just in my dealings with poor and rich, weak and strong, and whenever possible to defend the young, the old, the frail, the defenseless. Avoid needless conflicts and diversions, but be always willing to change for the better that which can be changed. Seek knowledge in order to know what can be changed, as well as what cannot be changed. Forge alliances with others who love liberty and justice. Be kind, remembering how fragile the human spirit is. Live the examined life, subjecting my motives and actions to the scrutiny of mind and heart so to rise above prejudice and hatred. Care. Be generous in thought, word, and purse.
I can't believe it has been almost a year since Joaquin was born. It feels like he has always been a part of our family, I can't even remember what I was like a year ago.
What were my thoughts and what were my hopes?
Mateo will be 4 in a couple of days and Diego will turn 6 in April. Time flies but one thing is for certain, Joaquin's first 11 months feel like a lifetime in all respects.
We cried a bit but we laughed even more. We ran around different places and so many appointments but we sat and gazed at him in astonishment even more. We had countless sleepless nights but with him by our side it felt like such a blessing, listening to him breath knowing that he has nothing to worry about. He will be loved and cared for. Then, in the morning when he wakes up between Jen and I, he smiles, and you know what real love is.
Often on this journey of mine, I am inspired by all the other mothers and fathers of children blessed with Down syndrome. I have had the pleasure of "meeting" them through their blogs and sharing in their journey. Just today, I "met" a mother that I feel could be my kindred spirit. Everything she writes speaks to me as if they were my own words. Even her son, Malakai, could be Joaquin's brother. Her blog can be found at malakaistow.blogspot.com. I have enjoyed every word I've read on her blog and I am overjoyed to see that she is looking into the Institutes in Philadelphia. I believe she lives somewhere "down under" but I haven't confirmed exactly where yet. I wish I could hop on a plane and meet her tomorrow.
On her blog, I came across a letter that she found in a local DS newsletter. I must share this letter because I feel the very same way about Joaquin. Another kindred spirit, these father's words could be my own.
"Always Reaching" written by a father of a child with Down Syndrome:
From the STL DS Newsletter by Matthew’s Dad
Every time I see my son, I reach for him.
It doesn’t matter if he rounds the corner 4 seconds after I have seen him last, or if I am picking him up from school and have not seen him for hours…I reach for him.
I can be 1 foot away or 100 feet away…I reach for him just the same. I reach for him with my arms, with my eyes, with my heart.
I wonder sometimes what I am reaching for.
I have seen this in other people when they see my son.
My family, my friends and perfect strangers. They all reach for him.
I see the same movements, the same gestures, the same need to hold out their hands for him. They want him to come to them, some know him and some don’t. Some call his name and others just motion for him. But they all seem to want him to come.
For a moment, you can see his spirit reflected in their faces. I watch the smiles grow across their faces with a fullness that is unavoidable.
When he falls into their arms (which is what he does to everyone), I see a momentary peace envelop them, and their eyes close, they pull him in and they experience what I call “The Joy of Matthew”.
He gives it to you. He wraps you in it. He wriggles and squirms and mashes the love into you. If you did not know what to expect, you may be surprised and find yourself amazed at the feeling, overwhelmed at the emotion he carries with him. I am lucky. I get to hold him all the time.
And I have been able to think about that feeling and where it comes from and what it may mean. I think Matthew is a window through which we see a pureness of emotion… pure happiness, pure sorrow, pure joy and pure love.
Despite what some may think, our special children are closer to God than we are. We see so much in them that we lack. We wish quietly in so many ways that we could be more like them. And when we hold them, if just for a moment, we feel closer to God.
What a year it has been. One that I'm sure we will look back on for the rest of our lives. It was the year our lives were changed profoundly by the addition of our third son.
Let me share my thoughts of gratitude as the first day of 2009 comes to an end.
I am grateful for my husband who is so patient with me. I am grateful for my children who give me so much love and joy and test me constantly and help me to be a better person. I am grateful for our family, our friends, our neighbors, our community who have helped us in ways too endless to list here. I am grateful for our home and it's coziness and closeness and the memories that we are creating in it. I am grateful for our stability in terms of having a steady income from Hector's job and my ability to stay at home with our children even in these tough financial times. I am grateful for our health.
My resolution this year is to live life one day at a time, to be present and to enjoy the simple things. I have made this resolution in the past and it has always been a challenge but I have a perfect example to follow and learn from now. Joaquin reminds me daily of what is good in this world. His constant smile cheers my soul and melts my heart. I know he has the same effect on Hector and the boys. In fact, he has the same impact on everyone he meets.
Happy New Year and may 2009 be filled with peace, love and joy.
Here is the photo we chose for our Christmas card this year. It was a last minute decision and it wasn't the best photo of all the boys but try getting three boys to cooperate during a photo shoot. Impossible!! We chose this photo because the baby's smile is so contagious. You can just see the love of life in his face. Diego is thoughtful as usual (although he doesn't like this photo because you can't see his whole face) and Mateo rarely smiles for the camera so his is par for the course. I love it just the same!
I have yet to get all the cards out to everyone and Christmas has come and gone so just in case... Happy Holidays to everyone!
While we were at the Institutes, Joaquin was re-evaluated and received a new treatment program that we will be doing for the next 8 months. Like Jen mentioned in the previous post, it is an intense program that still consists of some sensory stimulation, but the key parts this time are the intelligence program, masking, crawling and hopefully creeping on hands and knees soon. A big part of it will be a reading program with some math and encyclopedic knowledge. We are able to start the intelligence program since Joaquin's vision is now perfect for his age. Even though his convergence is still not resolved, he is able to use both eyes consistently and we should see some big improvements with his convergence in the next few months.
We met with Susan Aisen on Monday, she is the director of the Institute for Intellectual Excellence and is one of Joaquin's advocates. We walked into her office and the first thing that she said was that sometimes there is not a match between a family and the Institutes or that sometimes the program is too much for families or the communication between the Institutes and the family is not working out. At that moment my heart stopped, I honestly thought that she was going to let us down gently and tell us that we weren't a good match and could not continue working with them. But then she mentioned that we had been accepted to be in the Intensive Treatment Program and that they were thrilled with our progress and dedication. The last six months we've been in the Aspirant Program, it is basically the same program but it's a trial period to make sure that this is the right thing for our family and that we can work together. We were very happy to hear that we had been fully accepted into the program!
One of the things I love about the Institutes is how positive they are. Most of the staff have been there for decades and have seen thousands of children get better and amount to great things. They can barely contain their enthusiasm as they tell you the success stories and how you can do so many wonderful things for your child with their methods. Can you image going to your pediatrician and hearing you can make your baby with DS well with certain therapies, does that sound likely? It is so incredible that doctors focus so much on diagnosis and the symptoms instead of therapy or what is available for parents. Most professionals are busy telling you all the problems that you have to face and all the dire predictions of a life with a child with Down syndrome. The biggest hope you get from them is that people with DS can hold very simple, basic jobs and can possibly live semi-independently in a group home situation. They say it with a smile on their face as if we are supposed to jump for joy. I don't know about you but I will not settle for that, to me that scenario is a failure on our part as parents.
Children with Down syndrome were not always treated at the Institutes. They were included as a result of the work of Dr. Raymundo Veras, a brilliant doctor in Brazil who first found the Institutes while looking for help for his son who became quadriplegic after a diving accident. He later founded a branch of the Institutes in Brazil and it was the first place to begin working with children with DS. He convinced Glenn Doman (the founder of the Institutes in Philadelphia) that his methods worked for these children. Dr. Veras treated thousand of children and his legacy is so big that they started calling the children "Veras" kids instead of children with Down syndrome. He died in 1975. In his book, "Children of Dreams, Children of Hope", Dr. Veras writes about the Institutes and how he met Glenn Doman, but more importantly the second part of the book is about "How to Make Mongoloids Well." The word Mongoloid today is unheard of but one must take into consideration that this was written more than 30 years ago. It is amazing to me that the Down syndrome community isn't more aware of his work and the successes his children were able to achieve. Here are some of the questions he answered in the book:
What is the major cause of mongolism? I believe the major cause is prenatal brain injury.
What area of the brain is injured? I think the injury is in the midbrain and the cortex though I'm not sure. I know that the mongoloid brain looks different than the average brain. Surely our concern should be the material and the quality, not just the appearance. So if you ask me if I know without question that all mongoloids brains are injured in the very same way or in the very same place, then I would have to answer. "No, I do not know this." And though I think those are important questions that require answers. I don't think that mongoloid children need to wait for the answers before they are helped. The most important question is whether we can improve the children's mental and physical conditions. If we can change the mongoloids conditions then he moves out of the deficient category and into the brain injury category, which is a much nicer and more hopeful place to be. If you ask me if I am positive that mongoloids are brain injured in the classic sense, I have to answer. "No, I am not". But if you ask me if I am positive that they are not deficient. I'll answer, "I am almost positive that they do not have deficient brains" I do not have the slightest doubt that they can be helped, for I have seen their lives enhanced and their abilities improved. I have seen them enter normal school with normal children. I have seen them become normal people.
Are the conditions of mongoloids hopeless? I have spent the last sixteen years of my life-seven days a week, eighteen to twenty hours a day- living intimately with brain injured children and their problems. I can never understand how some doctors can make the most devastating predictions about a child's life. In the past, mongoloids have been victimized by reasoning such as, "Mongoloids are mentally retarded, mental retardation is an incurable disease; therefore it is impossible to make mongoloids well." That line of reasoning makes me want to vomit. That line of reasoning turned brain-injured children into mongoloids
Are mongoloids mentally retarded? This is a question of false nicety. By merely asking it, one implies that mongoloids are not bright. Would one ask if normal people are mentally retarded? Of course not. Then why ask if mongoloids are mentally retarded unless one believes that the answer is yes. Well, it isn't yes. The answer is NO. Mongoloids are not mentally retarded about the world, the world is mentally retarded about mongoloids. The truth is, most mongoloids are very bright children who happen to be brain-injured.
Are most mongoloids in worse condition than other brain-injured children? In many ways mongoloids are often in much better physical and mental condition than many other brain injured children. Mongoloids are not crippled as athetoids. Their actions are not as repetitive as are the autistic child's. Their muscles are not rigid, and in most cases they are very bright children.
Should parents be satisfied to let a child develop at his own rate of speed? Only if they do not want him to become normal. The brain-injured child's best chance is his parents dissatisfaction. Their unwillingness to accept his condition as unchangeable is often the only thing that saved the child's life. I use to hear about Freudian attitudes such as "Don't be 'pushy' parents or your child will have emotional problems". Mongoloid children cannot afford emotional problems. When have you heard of a mongoloid with emotional problems? Let's make these kids well, and then we will worry about their emotional problems. It is easy to fix the emotional problems of well kids.
Do parents of mongoloids have emotional problems? I hope so. I hope their biggest emotional problem is that they love their child. However, if that question means, "Do they have psychological hang-ups?" then I would answer, they certainly should have. If they have a hurt child who is not getting better, and if his chances of getting well are becoming fewer and fewer and smaller and smaller every day, and if the parents are not psychologically disturbed, then something is very wrong with them.
And it goes on and on, I find his work fascinating and thanks to him Joaquin and other children with Down syndrome are on their way to wellness.
On a side note, you notice that he uses the word "Mongoloid" instead of "Down syndrome", even though he thinks mongoloid is a rotten label, one that is inappropriate and demeaning, he says that Dr. Langdon Down's only contribution was to simply list out how these children are different from "typical" children. Down syndrome was not meant to be a diagnosis but just another label, like mental retardation or cerebral palsy. Down syndrome is not a diagnosis, it is a description of the symptoms or the results of a mental problem. I do not find that Down did anything to make these kids well, he merely listed the things that were wrong with them. Whenever we heard staff at the Institutes talk about Veras kids, we couldn't help but feel a sense of pride and hope in that description.
Now for the Results:
Directors Statement of progress to date
1. Neurologically: This period Joaquin has made excellent improvement in quality and quantity. Overall his growth rate compared to beginning was 256%.
6. Victory: (i.e. crawling, reading, etc.) Not this time.
Measurements: Height rate of change was 86.4%, Chest rate of change was 128.2%, Head rate of change was 80.0%.
What does this mean? Well, as you can see his chest grew at an accelerated rate due to the increased movement going down the crawling track over and over again. Now with the new program and his more intense Intelligence program, we will hope to see a significant jump in his head growth.
This has been a long post but I have one more thing on my mind. Every time we go to Philadelphia we get to meet the same group of people and sometimes a few new families. It is a great joy to see the other kids and their progression and talk about the trials and tribulations of being an Institutes Family. It is outstanding that most of these families come from far away, many from Europe, Latin America, Singapore and some from the far or middle East. There are a few American families as well and one common question we keep asking each other is "How did you learn about the Institutes?" The answer is different each time, and it is amazing to me that most of the time it is by chance or from a desperate search for answers on the Internet. That moment in time when they make the decision to learn more about the Institutes is one that changes the family's life forever.
Why do we share our story in this blog? At first because we wanted our family and friends to know how Joaquin is developing, but now we hope that there are other families that could benefit from our experience. We are not saying we are experts, but if we can help and support each other, and at the same time rejoice in each others victories, we can all benefit. Our hope is that it will enrich our lives and the lives of others. After all, we are all in this together.
Baby Bear Joaquin on our way to Philly on the plane.
Maxima is 3 years old with Down Syndrome, she is sooo cute!
Thanks to Abuela Lucha for being so patient and taking good care of Joaquin.
Joaquin having fun in the snow.
Trying to take a group photo with our host family. Many thanks to the Kriger family for their hospitality, they are such a lovely family.
Mama having fun with baby...until he has had enough.
On Friday, at the Institutes of the Achievement of Human Potential, Hector and I attended a lecture on Intelligence and were told that "Veras" kids (that's what they call children with Down Syndrome) are EXTREMELY intelligent. They mentioned that Veras kids are some of the brightest kids they work with and that the professionals have it all wrong. They are NOT mentally retarded. Not at all. They are perhaps too witty at times and this can lead to behavior problems because they are so smart and they know how to manipulate their parents and other adults with their charm or by playing the "baby". And some adults fall for it because they assume the children are "mentally retarded." The staff at the Institutes do not consider children who can read and do math at age 3 and have incredible encyclopedic knowledge to be "mentally retarded", they consider them gifted and talented human beings.
It was Susan Aisen speaking to our group. One of our favorite people at the Institutes that happens to be one of Joaquin's advocates and she has worked with children with DS and other brain injuries for over 30 years in Philly. She has walked the walk so she can talk the talk.
Hearing this was like taking a deep breath of fresh air. I can't tell you how inspiring her words were for us. We needed this lecture series. We needed to be here. We needed to hear those words from a professional. And we know she is telling the truth. Even at 10 months old, I can see the wisdom in my son. I can see he is bright, eager to learn and full of the greatest potential. All we need to do is provide the opportunities for him to learn and more importantly while he is still so young.
We still have two more days in Philly where we will get our new treatment program for Joaquin. It will include a reading program, a math program and an intelligence program in addition to the physical and physiological programs such as crawling, creeping, patterning, masking, etc. After attending these additional lectures, we are even more knowledgeable about the brain and how it works and how it grows. Joaquin is the perfect age to begin all these programs and he is going to LOVE it! We know he loves to learn and he is so eager for it. I just need to figure out how to keep up with him (and his program!!!) I'm going to need a lot of coffee and a much better organizational system at home in order to get it all done. What is also so great about this is that Diego and Mateo will benefit as well. It's a win win for the whole family.
So we are getting ready for our second visit to the Institutes in Philadelphia. We leave December 9th and I'm getting together all our documentation, videos and notes to report back to our advocates. I have to admit that it's been hard to keep up with all the things they intended for us to do. Life sometimes gets in the way.
I'm excited for our friends at the Institutes to see Joaquin. He really has accomplished so much in the past 6 months. I still can't believe he will be 10 months old in two days. He is such a different baby than he was 6 months ago but then again isn't the first year of a baby's life the most amazing transformation. I wonder how much of it is just Joaquin and how much of it is the work we've done together.
As I prepare for our journey to the Institutes, I can't help but think of all the things he hasn't accomplished and I know I need to be patient. Things are always going to be a little bit harder and take a little bit longer for Joaquin. It's difficult sometimes to see other children the same age as Joaquin, or even much younger, that are developing and accomplishing things that are taking him so much longer to learn. Even simple things like spoon feeding which is a big effort for us and comes so easily and naturally for others. Then there is the crawling....Joaquin is still only arm crawling when he wants to but hasn't figured out that it's a mode of transportation. He hasn't really taken off with the skill and I was secretly hoping he would be by now. I look at my niece Jolie who is spoon feeding easily and crawling on hands and knees all over the place and she is 6 weeks younger than him. I'm truly in awe of her ability to do these things and now I appreciate these accomplishments so much more than I ever did before. I just marvel at how easy it comes to her and how hard it is for Joaquin. He works so hard. You should see him pump his legs and arms in the air on his belly as if somehow he will fly across the room. It's adorable but heartbreaking at the same time.
I need to be patient, however, sometimes I can't help but feel like I'm responsible for his delays or that somehow I'm a failure as a mother if he isn't hitting these milestones. I completely understand that every child meets their own milestones on their own timeline but having a child with special needs puts a slight twist on that. It's like a race against time. You don't want your child to fall too far behind.
Despite the delays, I am so proud of Joaquin and we celebrate together every day. We celebrate the little things, the everyday things, small accomplishments and the big ones too. We celebrate how much more interactive and alert he is. We celebrate that he can hear all sorts of sounds....even the scary ones. We celebrate how he flirts from the grocery cart seat at shoppers passing by. We celebrate every little sound he makes, every movement, every single little thing. So even though I still need a lesson in patience, I know I will get there. I have the best teacher in the whole world.
Thank you Joaquin.
Reading his bits of intelligence Coming down the crawling track He sees his favorite bits He is going to get them Look! it is a surprise face... I love my bits
We were very brave and ventured out to the mall on Black Friday to visit Santa....and there was no line to see him. Very strange.
He wasn't the most convincing Santa and he kinda looks a little sinister in this photo. Joaquin was mesmerized by his beard and had his hands on his face but the photo people (a.k.a. Santa's elves) wanted him to look at the camera. So they proceeded to make a bunch of noise and whistling sounds to get his attention and when Joaquin turned to look at the camera, he looked a bit stunned by all the commotion. No tears were shed but at one point, Joaquin was squinting from all the noise. My guess is he is still adjusting to the increase in volume in his ears. It was also a very stimulating environment with all the lights and decorations.
I would have preferred a shot of him gazing at Santa (how sweet would that be!!!) but the elves wanted nothing to do with that. Apparently you don't have a say as to which picture you get.....as Diego and Mateo would say "you get what you get and you don't throw a fit!"
Is it OK to hope for a story like this to be written about Joaquin someday? But maybe with him in a Jesuit High School soccer jersey? Perhaps a Christian Brothers baseball uniform? Who knows.....all I know is that I can't wait to find out the script for Joaquin's life.
Here is Joaquin right before his surgery last Thursday. In a nutshell, the surgery was a success. The doctor said that she found lots of thick fluid stuck in his ears. She was able to suction it all out and then placed itty bitty ear tubes to help drain any more fluid that might build up. She said that Joaquin might be extra sensitive to the sounds around him and that he would be hearing clearly for the first time in his life. She said we might even need to keep the cotton balls in his ears for awhile to muffle some of the noise around him.
Joaquin recovered beautifully from the anesthesia and spent a good 30 minutes when we got home exploring every single toy and noise maker in his room on the floor. It was amazing to watch. Then.....his brothers arrived and a whole new volume level was experienced and the tears started. Joaquin is crying like he's never cried before. The sounds are startling and new and maybe even a bit scary for him. And even though it breaks my heart to hear him cry, I smile inside knowing it's because he can actually hear everything around him. We are so happy and can't wait to see the progress he will make now as a result of the successful surgery.
We'll keep you posted. GO JOAQUIN!!!
Joaquin on his way to the operating room....they only had pink pajamas.
Happy 1st Halloween Joaquin! Who needs toys when you have candy? Here is our boy playing with his brother's candy after a fun night with friends around the neighborhood. It was a wonderful night.
Thank you to all our faithful readers for "hanging" with us during this 31 for 21 posting challenge. I'm happy to say we were able to complete the challenge and it was an honor and a joy to do so.
Things are looking up. Joaquin is still battling some congestion but after two rounds of antibiotics back to back, his ears look good. He is eating again and seems to be in the midst of a reawakening of his senses and his abilities.
Wow.
So we are getting ready for our second visit to the Institutes in Philadelphia. We leave December 9th and I'm getting together all our documentation, videos and notes to report back to our advocates. I have to admit that it's been hard to keep up with all the things they intended for us to do. Life sometimes gets in the way. 
I was so touched by this article that I have to share it. 
Here is Joaquin right before his surgery last Thursday. In a nutshell, the surgery was a success. The doctor said that she found lots of thick fluid stuck in his ears. She was able to suction it all out and then placed itty bitty ear tubes to help drain any more fluid that might build up. She said that Joaquin might be extra sensitive to the sounds around him and that he would be hearing clearly for the first time in his life. She said we might even need to keep the cotton balls in his ears for awhile to muffle some of the noise around him.
