Saturday, July 26, 2008

Halo with a Twist

I've been meaning to write about a very special gift I got from Hector awhile back, shortly after receiving Joaquin's diagnosis. I wear it around my neck and I love it. It's my "Halo with a Twist" and it has Joaquin's name and birthdate engraved on it. I love it and I get compliments on it all the time. It's a pretty sterling silver oval "Halo" that is twisted on one side. It symbolizes the beauty and uniqueness of imperfection. It has become the first international symbol for Down syndrome. The founder of the website Band of Angels, Cynthia Kidder, describes it best. "It’s shimmering and reflective of light; a little different, sturdy yet beautiful. The light is reflected and radiated from it. The twist is the reminder of imperfections in each of us."

Thank you again Hector for my beautiful necklace. I love it and I love you.

Friday, July 25, 2008

Gearing Up...

We are gearing up to start the Institutes program this Monday and it's going to be a lot of work.

We will be patterning Joaquin 6 times per day in a truncal pattern for up to a minute each time. He will be on an incline crawling track starting 10 times per day and building up to 30 times per day for a distance of 1 meter each time and the majority of his free time will be spent on the floor in different stimulating environments. We have put a checkerboard wall up on one wall in his room. We will be stimulating his light reflex 20 times per day and having him locate light in a darkened room 5 times per day. We will have him look at black and white images 3 times per day and read stories to him with books that have large colorful images. We will stimulate his startle reflex 15 times per day with loud unexpected sounds as well as introduce him to different interesting and household sounds 15 times per day. We will stimulate his sense of touch 20 times per day with hot, cold, warm, cool, soft, rough stimuli on his arms, legs, hands, feet, etc (stimulating both his vital sensation as well as his gnostic sensation). We will also get him to grasp a pole 10 times per day and work up to having him hang on it using two hands and throughout the day we will work on different balance activities around the house (spinning, rocking, swaying, etc). We will also start using a choice board (basic yes/no board) and some basic sign language (milk, eat, more signs) with him 10 times per day.

Whew.......I think I can fit it all in. We WILL fit it all in!

Tuesday, July 22, 2008

Unanswered Questions

It's still difficult to see adults with Down syndrome. Lately, I've run into some groups of disabled adults at the park and at the mall and there is always at least one or two adults with DS. It's very surreal for me as I look at them and then look at my baby. I don't think I've noticed as many Down syndrome adults in the past five years as much as I do now. Lately the groups of people I have seen are severely impaired and have the very typical behaviors that are often associated with severe disabilities. Their group leaders escort the adults through the mall, holding their hands or escort them to the park picnic tables where they all sit quietly with little or no interaction. This is so terribly difficult to see. I can't help but wonder.... what kind of childhood did they have? Are these the babies that were sent away to an institution? Are these the babies that were more severe and the parents weren't able to take care of them? Where do they live now? Are their families at all involved? Did they have services early on to help them achieve their potential or were they just left alone to fend for themselves? I have so many unanswered questions.

What is so strange is that I have always been around disabled people and I'm typically very comfortable around this population. My major in college was Recreation Therapy and some of my first jobs were working with disabled children and adults. For over 8 years I worked with all different types of patients in every setting imaginable from disabled day camps to stroke and head injury clinics and children's hospitals to state hospitals with criminally insane men. I wouldn't say it was my calling but I've always had a place in my heart for the disadvantaged. I think somewhere deep down inside I always thought I might have a child with a disability. My mom and I have always sought out babies who have Down syndrome at church or at big public gatherings. I remember when pregnant with Joaquin, seeing an adorable infant with DS at a San Francisco Giant's game and my mom and I were mesmerized by him, pointing him out to Hector. I have always been curious about these children and loved their beautiful smiles and pretty eyes. I can even recall thinking and even saying to Hector, early on in our relationship before we were married, that we were the type of couple that would be given a child with Down syndrome....with my background and his experience with his nephew. He doesn't remember this conversation but I do. It's still surreal to me that this is now my reality. Even my mom who is a neonatal nurse has always said that her favorite babies in the nursery are the "Down's babies" and now she has her own.

But it's the adults in group settings that I still am challenged by and I'm a bit ashamed of it to be honest. I know I shouldn't pity them but I do. I guess what makes these recent experiences so uncomfortable for me is that I never want Joaquin to be "shuffled" around. With my background in Recreation Therapy, I know that there is a reason these adults are escorted around and taken to malls and parks. It's called life enrichment and normalization, but now as a mother with a child with DS, I see it as just the opposite. I know these adults probably weren't offered early intervention services or quality interactions as babies and young children. The life these adults lead is still valuable, of course, but all I see is the loss of potential and what could have been. I know that the future for Joaquin can and will be very full, active and enriched and hopefully this is the case for most every child born today with Down syndrome, as it should be. In the near future, I hope to see more adults with DS walking independently in the mall or with friends and family shopping where they want to go. I want to see adults with DS taking their own young nieces and nephews to the park to play and to push them on the swings. That is normal and that is life enrichment. That is my hope for Joaquin.


Joaquin in his new crawling track

Wah Keen!

Sunday, July 13, 2008

The Special Mother

This story was written by Erma Bombeck on May 11, 1980 and Glenn Doman recited it for us at the last hour of the last day of lectures in Philadelphia. It was very touching and of course I was crying by the end of it, as was every other mother in the room with me, all of us feeling a sense of camaraderie.

by Erma Bombeck

Most women become mothers by accident, some by choice, a few by social pressures, and a couple by habit.

This year, nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how mothers of handicapped children are chosen?

Somehow, I visualize God hovering over Earth selecting His instruments for propagation with great care and deliberation. As He observes, he instructs His angels to make notes in a giant ledger.

"Armstrong, Beth: son. Patron saint, Matthew. Forest, Marjorie: daughter; patron saint Cecilia.

"Rutledge, Carrie: twins. Patron saint....give her Gerard. He's used to profanity."

Finally, He passes a name to an angel and smiles. "Give her a handicapped child."

The angel is curious. "Why this one, God? She's so happy."

"Exactly," says God. "Could I give a child with a handicap to a mother who does not know laughter? That would be cruel."

"But does she have patience?" asks the angel.

"I don't want her to have too much patience, or she will drown in a sea of self-pity and despair. Once the shock and resentment wear off, she'll handle it."

"But Lord, I don't think she even believes in you."

God smiles. "No matter, I can fix that. This one is perfect. She has just enough selfishness."

The angel gasps. "Selfishness? Is that a virtue?"

God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied.

"She will never take for granted a spoken word. She will never consider a step ordinary. When her child says 'Momma' for the first time, she will be witness to a miracle and know it! When she describes a tree or a sunset to her blind child, she will see it as few people ever see my creations.

"I will permit her to see clearly the things I see- ignorance, cruelty, prejudice- and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as she is here by my side."

"And what about her patron saint?" asks the angel, his pen poised in mid-air.

God smiles. "A mirror will suffice."

Tuesday, July 8, 2008

Never Leave the Wounded Behind

A post from Hector...
Some of the lectures we heard at the Institutes were given by the staff, but mostly by Janet Doman, the Director of the Institutes and Douglas Doman, the Vice Director. But some of them are still given by Glenn Doman, the founder. He sits in a chair at the front of the auditorium and uses cue cards that he reads. Every day, we were asked to arrive at least 15 minutes early in the morning so we could find our assigned seats because they shuffle everyone around. The last day Jen and I were lucky to be seated in the front row a few feet from where Glenn Doman was sitting.

That day we were really tired. We had heard more than 40+ hours of intense lectures in less than 5 days and the amount of information was overwhelming, so even though at times I wanted desperately to shut my eyes and rest my mind, having Glenn Doman at arms length and looking at you when he speaks, there was no choice but to listen.

One of the required readings for the course is the book, "What to do about your brain injured child..." which I read the week before our trip, I found the book fascinating, and most of Glenn's lectures are in the book, but to hear them from the man himself was a treat. Towards the end of the book he talks about family and how throughout history the family has survived and the reason it survives is so that we can divide our time unevenly. He goes on to talk about his three families: the Doman family, the Staff at the Institutes, and the Infantry Rifle Company in World War II. This is a excerpt from his book:

"My third family was my infantry rifle company. That was a true family. In infantry rifle company, the only people in front of you are the bad guys. They are shooting at you and trying to kill you. You are shooting at them and trying to kill them too. Under these circumstances you make very dear friends very - very, very quickly. More things happen to you in five minutes than might happen normally in a lifetime. Sometimes you stop shooting long enough to crawl out in the field where a lot of shooting is going on in order to grab a wounded soldier by the leg and pull him in. That's dividing your time unevenly. Everybody's in favor of that and it does amazing things to you. One of the most important principles I learned there was a law of the infantry. The law is you never leave the wounded behind. Most casualties take place in the infantry so it is vital that you never leave the wounded behind. As an officer-in-training you think that you understand it. Then you're in combat and the kid next to you gets a bullet through his chest. And down he goes. It doesn't occur to you for one second to leave him behind. Not because it's a principle you have been taught but because he is you. If the wind had been four miles an hour more from the east, you'd be lying on the ground with a bullet through your chest. All things being equal you might as well be the one lying on the ground three minutes from now. You never leave the wounded behind because that wounded soldier beside you is you. That is why you never, never, never leave the wounded behind."

As I was listening to him say these words, I was picturing baby Joaquin so full of love and smiles and how much he needs us to divide our time unevenly, how he needs us to roll up our sleeves every day and do battle to help him reach his full potential. Because the alternative is not an option. We will never, never, never leave our beautiful baby boy behind.

At Home with Down Syndrome

This article is an absolute must read.

At Home With Down Syndrome

If you get a few moments to take a look and read it, please do.

Sunday, July 6, 2008

Back from Philly

We're back from Philadelphia and still recuperating from the 10 day trip.

First of all a HUGE thank you to my mom and dad for their support. My mom came with us to Philly for the first 7 days to watch Mateo and Joaquin while we took the course. This was no easy feat but somehow she managed to do it with grace and even get Mateo's haircut, get him potty trained (at least #1, still working on #2) and take care of Joaquin who was unfamiliar with the bottle but managed just perfectly with my mom in charge. She did this all despite the small living quarters (her bed was in a walk in closet turned bedroom!) and the blistering heat and humidity of Pennsylvania in the summertime. Thank you so much Mom! My dad took care of Diego for the week which included nursing a bee sting he got the first day we were gone- poor little boy! Thank you Papa for your loving care that week. Finally, a GIANT thank you to my friends Gina and Michelle for watching Diego during the week while my dad was at work. Diego had an absolute blast and barely missed us due to all the fun he was having with his friends. You all mean the world to us and I thank you from the bottom of my heart. Knowing all our boys were in good hands gave Hector and I the opportunity to really focus on the course at the Institutes.

So we completed the course "What To Do About Your Brain Injured Child" the first week at the Institutes. The Institutes for the Achievement of Human Potential is located in Chestnut Hill which is a suburb of Philadelphia. It is a gorgeous little town with cobblestone streets and lots of charm. The Institutes is located on a very large piece of property (something like 6 acres) and it is beautiful and green and lush. It was about a mile away from our rented apartment so Hector and I had a lovely walk everyday to and from the course.

The course was everything we hoped it would be and more. When Glenn Doman walked into the auditorium for his first presentation, I was brought to tears. He has to be close to 90 years old and knowing all that he has accomplished in his lifetime and after reading all his books, I was just in awe of him. He is a darling of a man, looks a bit like a "healthy and fit" Santa Claus and I was moved by all his presentations. He is one unsung hero. A wise sage.

We learned so much about the brain- how it can grow by use, how it is stimulated through our five senses, how the functions of the brain can be improved and how it's growth and development is an ever-changing process. We learned that treating the symptoms of brain injury does not work. Brain injury is in the brain so it must be stimulated through the visual, auditory and sensory pathways. We also learned that 99.9% of us have some degree of brain injury so all of us have something to gain in understanding how the brain functions.

Obviously it would be impossible to share everything we learned, there is a book named after the course and I would highly recommend it for anyone interested in brain development or for parents with children who have any developmental delays or concerns. Also, the book "How Smart is Your Baby" is wonderful for expectant parents and parents with tiny babies who want to enrich their babies learning environment. There is also a quick read called "Pathway to Wellness" that summarizes the program and gives a nice overview of the content of the course.

In a nut shell, we learned the vital importance of movement in developing the brain, how important the stages of crawling and creeping are, how to create an ideal environment in the home, how intelligence is not related to brain injury, how brain injury only affects the child's ability to express intelligence, how to increase communication, and the importance of nutrition and how what we eat, drink and breathe significantly affects brain function, growth and development. We also had the pleasure of meeting so many wonderful families all on their own journey with their amazing children.

Jen, Hector, Glenn Doman, Katie Doman (Glenn's wife) Janet Doman (Glenn's daughter and current Director) and Susan Aisen (Director of the Intelligence Programs)

The following week Joaquin was evaluated and assessed by the staff at the Institutes. We determined his neurological age and compared it to his chronological age to come up with his diagnosis. He has a severe, diffuse, bilateral mid brain injury. Based on this information, an intensive treatment plan was created to meet his specific needs. We have a plan for the next 6 months and will return to the Institutes in December for re-evaluation and a new plan based on how he thrives on the current plan. We have physical goals, intellectual goals and physiological goals. As I mentioned in my previous post, the first month is focused on changing our diet, starting vitamin supplements, and getting organized and prepared for the rest of the program which will begin the first week of August. Right now, Hector is busy building a crawling track for the baby which includes an inclined floor. I'm busy going through our kitchen cupboards, making dietary changes and preparing the supplies for the sensory stimulation aspects of the intellectual program. We have also started some simple patterning with Joaquin which we are to do several times a day building up to a minute per session.

We will blog our way through the program so we can share all the different exercises that we will be doing with Joaquin. The key to the program is frequency, intensity and duration so our days will be filled with the many different activities of the program and it is designed in such a way that Diego and Mateo can get involved and help out. The biggest key to the program is to do everything with a sense of joy.

Joaquin waiting for his next appointment

Thursday, July 3, 2008

Goodbye Dairy

I officially have to say goodbye to dairy, my one true love.

Anyone who knows me, knows that my diet consists mainly of dairy and dairy products. I LOVE milk, cheese, yogurt, ice cream, cream cheese, lattes, chocolate, whip cream, and did I mention cheese? We found out in Philly that I no longer can have dairy (as long as I'm breastfeeding) and that Joaquin should never be introduced to it as he begins solids in the next few months

This is going to be hard....really hard. All I know is that perhaps those last few pounds of baby weight might actually disappear if I can't have ice cream or a milkshake after every meal.

The only other food that the baby should never be introduced to is corn (including corn products and corn syrup).

There are a few other foods that we should avoid for a period of time (6-12 months) and introduce slowly to watch for allergic reactions and/or intolerances. These include wheat, soy, bananas, nightshades (i.e. tomato, white potato, eggplant, peppers), citrus and peanuts/pistachios and also anything with artificial colors, additives or flavors. Fortunately, this is easy to do with a newborn since we have full control over what he eats as an infant. Hopefully, he'll have no problems with these foods but we'll take it slowly and watch carefully. I have also started taking a good multivitamin, an omega oil (EPA/DHA) supplement and probiotics which the baby will also be on as he transitions to food. He will also need additional B-12 vitamins and folic acid when he stops nursing.

We are considering having the whole family give up dairy products and corn. This will be a challenge but we feel it's the right thing to do. Thankfully there are a lot of non dairy options available nowadays and we'll steer the boys towards sherbets and sorbets when we go to the ice cream shop (this was the first thing that came to my mind!!). Still not sure how to handle Diego's addiction to the vanilla milk at Starbucks, but we'll figure it out as we go.

This is our first assignment and the first part of Joaquin's Intensive Treatment Program that we received in Philadelphia. We learned that what we eat, drink and breathe significantly affects brain function. We also learned that the fluid in the baby's ears may be resolved from dietary changes alone. This would be so exciting. It also gives me the motivation to say "adios" to my beloved milk.