Monday, November 30, 2009

Drumroll Please...

We have a potty trained superstar!

On Black Friday, we finally bit the bullet and started the 3-day potty training boot camp, e.g., Lucas in nothing but a t-shirt and undies. We were nervous and scared in this uncharted territory, having never potty trained anyone before, especially a child with a disability. We really didn't know what to expect because although Lucas has been going consistently on the potty at school for three weeks, his Pull-ups were usually wet between trips. We didn't know how he'd verbalize/communicate his need to go; but low and behold, by the end of the third night, he was saying "potty" as clear as a bell, and every time we got to the bathroom, he damn hallelujah!

After approximately 45 trips to the bathroom (I kept record), several loads of laundry, and countless hours of Magadascar 2, he's completely out of Pull-ups. We were nervous about his first day at school in big-boy underpants, but he didn't have a single accident -- he stayed dry this afternoon for about four hours. I've been running around telling everyone who will listen about this major milestone...we are SO proud!

What this exercise has taught me more than anything is DO NOT UNDERESTIMATE THIS CHILD! As has become the norm with Lucas, we may facilitate the situation, but he sets the pace and leads the way -- teaching us barriers are meant to be broken.

Lucas is using a padded seat to go on the toilet, but he's accumulating trophies (stickers) on the little one. See...

Friday, November 27, 2009

Giving Thanks

This has been a financially challenging year for the Rhyneer family -- our house is under contract for a short sale (originally purchased in 2006 when I was 6 months pregnant for $417K and now selling for the bargain price of $170K -- we bought our first home in one of the hardest hit real estate markets), and Tom's employment has been sketchy and he's been unemployed for nearly two months now which has further stressed our financial situation. However, we have much to be grateful for...we have our health -- and Lucas didn't need open heart surgery (yeah!) -- I have a steady (if stressful) job, Lucas is growing and thriving, Tayler is graduating high school and soon on her way to college, and we have each other and so many wonderful, loving family and friends both near and far. As a matter of fact, our dear friend Mike sent us a Thanksgiving card that puts it best: "Treasure the love you receive above all. It will survive long after your gold and good health have vanished" (OG Mandino).

For Thanksgiving, we enjoyed the company of one of my dearest friends, Armando (Lucas' godfather) and his family, who are like my own. Huge props to Tom who saved my turkey feast...when I was crushed because there was no stuffing on the menu (what is Thanksgiving without stuffing?!?!), he made stuffing out of Cuban bread and ingredients available at Pepe and Haydee's was AWESOME! Here is Lucas helping Tom make his amazing sweet potato casserole, Lucas with Mandy, and Mandy and Jorge (who made the yummy fried turkey). The weather was cool and just lovely. I hope you had a wonderful Thanksgiving yourselves and have as much to be thankful for as well!

Tuesday, November 24, 2009

Tell it Like it is...

So much about being Lucas' mom has opened my life up to circumstances that have fundamentally shaped who I am because he has Down syndrome, and I mean that in a good way -- although there are times when I still struggle with some of my feelings, those are few and far between, really. Every day, my heart swells with love, pride, and admiration for my son who is the center of my world.

In my previous post, I mentioned I'd encountered some of the most amazing people along this journey, many of whom I haven't had the chance to meet in person, but who have had a tremendous impact on me as a parent and a person. That leads me to this post by Lisa of Finnian's open letter to new parents of a baby with Down syndrome.

Although I agree with just about every word Lisa says, one statement in particular struck me..."There was a time when the prospect of living life with a child with Down syndrome was one of the worst things I could imagine. Now, the worst thing I can think of is to not have my son."

When Lucas was born and we were told he had Down syndrome, I was so lost and in too much pain to know where to turn or even what I really needed...I wish I'd come across this letter. As the clouds started lifting, I found my way to moms who were willing to reassure me "it's all going to be okay" and "you're going to love him more than you could ever imagine" -- some days it was the strength of their words alone that pulled me through.

In reading Lisa's letter (below), I think back on who I was and am amazed at how far we've all come. Three years later, not only am I a believer, but a preacher too. Hats off to Finnian's Mom -- I couldn't have put it any better myself. This Thanksgiving, among my many blessings, I feel lucky to be part of this incredible force -- a caring, compassionate, committed, and open-hearted community. Thanks too to Bridget's mom, Lisa, for bringing the letter to my attention, as seen in Mamapedia...

Photo by: Julie D
Photo by: Julie D

Letter to Parents Facing a Diagnosis of Down Syndrome

Dear New Parent/Parent-to-Be:

First of all, congratulations on your new baby!

You may be feeling shell-shocked right now, recently having learned that your baby has Down syndrome. You are probably feeling very frightened: what kind of health problems might my baby have? What does the future hold for him/her? For me? How can I love this baby? Can I love this baby? You very well might be feeling angry and bewildered: Why me? How could this have happened?

This is called grief. It’s okay to grieve for the baby you thought you were going to have. Allow yourself to go through and feel those emotions. They are normal.

If you give yourself and your baby a chance, though, there will come a time when you will suddenly realize: what was I so afraid of?

When I found out that my son has Down syndrome, I railed against fate. What did I do to deserve this? Why me? I grieved for the baby I thought I was going to have, and for all the dreams I had for that baby that I didn’t even realize I had until they were shattered.

From the moment I saw my son’s little face… no, before that – since I felt him swimming and turning somersaults in my belly, I was overwhelmed with love and a fierce feeling of protection for him. When I found out that he has Down syndrome, the love didn’t go away, but there was an adjustment my heart and mind had to make. A big adjustment.

While I was busy grieving and adjusting, my son was busy just being a baby. Yes, he had that pesky extra chromosome in every cell of his body, but he was (and is) oblivious to it. Over the first year of his life, he learned how to roll over, to coo and gurgle happily at me, to cry when he needed or wanted something, to breastfeed like a champ, to sit, crawl, play with toys, clap his hands, eat baby food from a spoon, follow his brothers and sisters around, and pull my books from their shelves. Hmmm… he’s not so different from the babies I had before him, actually. His giggle is just as infectious, and his tears just as heartbreaking.

He is not lovable only for his sameness, however. He is utterly lovable for his differences as well. He has to work harder and longer to reach the milestones that other babies breeze through, making their achievement all the more sweet. He’s as unique as a snowflake, just as all children are.

I don’t know what doctors are telling parents these days – parents who receive a prenatal diagnosis of Down syndrome. I’m sure it’s a lot of technical, statistical, scientific gobbley-gook, though, and I don’t know that the information they tend to give is up-to-date. There are lots of books out there, some of them helpful, some not.

What will life be like for you and your new baby? If you really want to know, talk to actual parents of children with Down syndrome. You will be hard pressed to find one who wishes they didn’t have their child. But even they cannot tell you what your life will be like with your child. That is largely up to you and what you choose to make of it.

Some people will feed you platitudes, telling you that “special babies are given to special parents.” You will hear things like, “Children with Down syndrome are so happy and loving!” “They are angels in disguise, sent directly from Heaven.” Bah! I don’t believe any of that. Those are empty words spoken by people who don’t know what else to say, and who are secretly glad it wasn’t them who were “chosen” to be “special parents.”

Here’s what I believe: it was a fluke, this chromosome that triplicated in my son’s genetic makeup. Because of it, he shares certain traits with other people who have Down syndrome. I don’t know what he will be capable of, but I have very high hopes and high expectations for him. Those dreams I had for him that were shattered? They weren’t really shattered at all. It just took me a while to figure out that his life is not about my dreams, it’s about his dreams, and only he can decide what those dreams are. Only he will be able to show me how his life is going to play out.

Although I am not a believer in some grand, divine plan, I do believe that I have been given an opportunity for enlightenment by having my son. Having him has forced me to reevaluate what it is I value. What constitutes a happy, full life? Does a high IQ ensure happiness, or even success? What is the criteria for a life worth living? I have been given a gift of appreciation and perspective that I never had before. I am able to see and accept my fellow human beings with a more open heart and a broader mind. Sometimes, I secretly think that my friends who have not had a child like my son are missing out on something very big.

Those questions posed earlier… What does the future hold for him/her? For me? I don’t know the answers to those questions. But the truth is, none of us has the answers to those questions about any of our kids, whether or not they are born with extra chromosomes. Life is a crapshoot, for each and every one of us, and for each and every one of our children, and our children’s children.

There was a time when the prospect of living life with a child with Down syndrome was one of the worst things I could imagine. Now, the worst thing I can think of is to not have my son.

The most important thing I can tell you is this: It will be okay. It really will. You will love your baby, you will laugh again, life will be full, and enriched in ways that you can’t even imagine.

Sunday, November 22, 2009

Ups & Downs

We had a lovely day yesterday visiting with our friends, the Perez family. Krysta is their youngest daughter who is 5 years old and has Down syndrome; although Down syndrome brought us together, our friendship has continued to blossom and we feel very fortunate to have them in our lives...they are some of the many wonderful people we've met because of Down syndrome. Like Lucas, Krysta is an awesome kid who has loads of potential...she's doing so well and is so incredibly sharp and verbal. Since she's a couple of years older than Lucas, I always use her as an example of what Lucas can accomplish with his tenacity and our perseverance.

What I have realized is that the older Lucas gets, the more he does and knows and grows, but the more the world expects of him (if he were a typically developing child). For instance, at the playground yesterday, a girl came up to me and asked, "does she have a ploblem (yes, it wasn't a "problem" but a "ploblem") because she fell. Is she your baby?" and I didn't realize that because of Lucas' long hair she was talking about I said "no" and went about chasing Lucas around the playground. It wasn't until this morning, that I realized she was talking about Lucas -- it's actually a good thing because I need more practice in toughing up my skin and finding the right words to say in those situations...I know it's a teachable moment and I should say "he has Down syndrome and that affects his coordination, blah, blah, blah..." but instead, I just want to punch her out. I know, really grown up of me. But, it's the truth. I just want to go to the playground -- like freakin' everybody else does -- and enjoy my son without having to think about Down syndrome...really, is that too much to ask? Then, another woman said to her child (about the same age as Lucas) to go up the stairs because "he's taking his time" climbing up the ladder -- I wanted to punch her out too. I know I'm way too touchy about this, but isn't it just as easy to tell her kid to wait a minute and she can get her turn too. I'm learning to ignore the stares and the ignorance, but some days, it's not easy.

I was telling Tom this morning that I think when you have more than one child (in our case, Tayler is nearly grown) and have another with a disability, you don't have as much time or energy to give to this stuff; and that's a good thing. Good because you have another child who is growing and developing as she/he should and it must help balance things out and bring more of a sense of "normalcy" to life, even though we don't feel anything other than "normal" -- most people probably wouldn't agree. In a society where it's a race to be the smartest, fastest, best at everything; there's not much room for compassion, love, acceptance, and's just the way it is. Lucas will spend his entire life chasing to keep up and what we can do about it is help pave the way so he can chase his own goals and dreams and not those of others, even if they aren't what we ourselves dreamed they would be.

Tuesday, November 17, 2009

Happy Birthday Roscoe!

Today is Roscoe's 2nd birthday...seems like only yesterday, I eyed him on his breeder Sheryl's website and fell in love with the adorable, newborn Havanese. He came home at nine weeks...all the way from New York. He and Lucas are growing up together and we couldn't imagine our lives without Roscoe...not to mention, I'm sure he's Lucas' definition of best friend (and the next best thing to a little brother). Here we are celebrating with our fur ball. Daddy already cooked him some ox tail. Watch Lucas signing and singing/saying "happy birthday" and getting a little too excited to blow out Roscoe's candle!

Sunday, November 15, 2009

Children's Alley

There was lots to do this past weekend, including the yearly Miami Book Fair International. They have a wonderful "Children's Alley" especially suited for small kids with lots of activities, which included opportunities for Lucas to plant his own tomato seed, decorate a pot, lots of coloring, and even visits with favorite characters. Lucas enjoyed meeting Clifford the Dog and was loving the Dr. Seuss exhibit (mostly because he wanted a hat of his own). We picked up several new books for Lucas while we were there.

Sadly, Lucas use to love Tom's favorite all-time story "Where the Wild Things Are" but in the last 6 months or so, his "fear factor" has really kicked in so he freaks whenever Max makes it to the land of the wild things (that's usually as far as we make before he starts screaming "no!" at the top of his lungs). Don't let the picture below fool you...he was okay when he first saw "wild thing" but the moment he tried to make contact with Lucas, well, that was that!

We finished the morning off at Bubba Gump's in Bayside where Lucas decided to become a fan of Daddy's caesar salad.

Potty Training Update

In true Lucas form, he's doing his own potty training. We've been talking about it for months now (since he was 31 months and first showed real interest in the potty) and now we're planning the 3-day potty training boot camp to start on "Black Friday" -- the day after Thanksgiving. But, in the meantime, Lucas has started to go on the potty at school 2-3 times a day (every time he's put on the potty), although his pull-ups are still wet when he gets changed (maybe he's like his Dad and has a small bladder :)

Anyway, here's "proof" of his potty achievement -- the daily report from school. I realize I've been MIA, but I now have lots to report about so check back soon for more.

Tuesday, November 3, 2009

Lucas at 36 Months AKA 3 Years Old!

We've had a very exciting couple of months since my last entry (at 34 months) since Lucas has accomplished some key educational milestones. He now knows all his (primary), white, brown, red, blue, green, yellow, orange, purple, and even pink. Another pretty amazing thing happened right around his birthday...I bought him foam bath letters and decided to ask him to name letters in the bath in random order...the kid knows ALL the letters (and with good articulation too)! We've been using Starfall with him since he was an infant and it's obviously paid off. He also likes singing the alphabet song, although he does that in chunks (a,b,c,d,e..... n,o,p,q,r....w,x,y,z). We're capitalizing on his interest in letters and books so we've started more sight reading and that's coming along too...he probably knows about a dozen sight words. He is expanding his vocabulary and starting to use more 2-word phrases such as "open door" and "let's go" and "puppy Roscoe" and my favorite..."thank you" (what a polite child!); he's also starting to say "U-cas" (Lucas). The other big deal is he can count to 10 -- we're working more on getting him to count "things" so the numbers have real meaning.

At the Debbie School, they conduct the Battelle Developmental Inventory right before kids turn 3 (it's a Miami-Dade County requirement) and we received Lucas' scores...we are thrilled he is performing "within normal limits" in all areas of development (on the lower side on a couple, but he's above average in the "social-emotional" area -- not a big surprise there). The sad, double-edged truth of the matter is that when his godmother (who happens to be a developmental specialist) saw his scores, the first thing she told me was "he'll never qualify for services with these scores." It still amazes and confounds me that this can be true when a child has a qualifying medical condition -- and although performing exceptionally well for a child with a disability -- is still NOT performing on par with his typically developing peers. Whatyagonnado? Fight the power! Okay, off my soap box.

Lucas is blowing bubbles, whistles, and even a recorder (you know, the "instrument" we played in elementary school)...he blew out his birthday candles this year which was very exciting! He is wearing his glasses now most of the time -- he takes them off and puts them back on...I guess he's finally started to see the light (and everything else)! What isn't so exciting is that Lucas is getting more stubborn and more theatrical...he's not as easy going as he use to be and now often wants to do things when HE wants to do them, not when he's told. He loves telling us "no!" He's enjoying taking showers (with Daddy usually) and even washing himself including his hair (with help). He's also enjoying more pretend play.

Lucas is one of the most social/friendly kids you'll ever meet...which is characteristic of kids with Down syndrome (although I hate generalizing and labeling since each child is different and unique, I can't ignore this attribute which seems fairly consistent with kids I've met -- I happen to think it's a fabulous trait when properly channeled). He makes friends -- both adults and kids -- wherever he goes. Since he's the only child in our home (his big sister is 17), one of the best outcomes of school is Lucas is learning to defend himself and he can fearlessly insert himself in the middle of a play situation, even with older kids. Whether brave or works for him!

In the fine motor skills area, we're working more with playdoh and finger paints. We've established Lucas is a righty (sorry to my left-handed husband). He can copy a straight (although short) horizontal or vertical line. He eats with both a spoon and fork (although he's really messy and still likes to use his free hand for help). Lucas is learning to use a scissor (the kind that closes on its own) and is experimenting with glue (watch out!). He still needs to be reminded what surfaces he can color on (at least he got "not the wall!"). We're starting to do more simple craft projects with him.

As for gross motor skills, his physical therapist has Lucas working on navigating an obstacle course, alternating legs going up and down stairs, and riding a tricycle. He's still working on jumping -- and we still need to pick up a trampoline to help with that (they're pricey!). He can catch and throw a large ball...we're working on smaller balls now. He's kicking both big and small balls about 5-7 feet. He's enjoying the playground more and can go up a ladder to get to a big slide and goes down by himself -- this is big for Lucas who can sometimes be overly cautious.

His favorite things to do now are "reading" books -- in fact, his teacher just told me Lucas conducts reading circles at school where he pretends to read a book while other kids listen in; he also likes surfing on the computer (not quite), playing with Roscoe and the kitties, bowling, and, of course, Signing Time AKA "Rachel" -- I tell you, the kid is obsessed, but he's learned so much -- we limit his viewing time to about an hour a day (2 episodes).

We're still a no-go on the potty training...which I vow to tackle before Christmas!

All in all, we're so proud of all the milestones Lucas has reached this past year and look forward to more steady progress and more good times ahead!

Sunday, November 1, 2009

Happy Halloween!

We had a great (but exhausting) Halloween in near 90 degree weather...that's South Florida for ya! Lucas really enjoyed the trick or treating, especially since Daddy carried him most of the way. It was our first time dressing up as a family -- Lucas as a Zen master, Tom as a samurai (doesn't Tom look a little like Steven Segal? maybe it's just the white man in a kimono), and me as a was fun! We went to our friend Liz's development where we got energized on pizza with other friends before the hunt for candy. Oh, don't miss my homage to "Twilight" with my pumpkin carving; the other pumpkin is Tom's masterpiece. Hope you had a great Halloween too!