On the Move

Here he comes.....

The Upside of Down

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.

Frustrated

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.

Hands and Knees

Our boy is on his hands and knees!!!!

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.

A Story to Share

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.

Copywrite 2006, Candee Basford

Happy 1st Birthday!

To my dear sweet Joaquin,

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.

Mama

25 Things....

25 things I love about you Joaquin....

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.