Happy Nine.

 

Happy Birthday Ryan.

 

 

 

 

 

Homework.

Some nights it take all of us working together to get homework done.  Rourk and I were playing tag team tonight to get Ryan to finish his worksheets.



Picture Postcard.

A couple of shots from our recent trip to the Homosassa Springs Wildlife Park.  Lilly wasn't in a photographic mood, so there aren't any shots of her, but Ryan enjoyed himself.

Halloween 2009

Despite the rain and the 100% humidity we had a great time Trick or Treating in our neighborhood.

Big Boy.

Doesn't he look like a young man? It's hard for me to believe that he's looking more and more like a little boy and his baby face toddler days are behind him. He has also gained 8 pounds since last year! I remember worrying that he'd never break the 40 pound mark and he'd be sitting in a 5 point harness car seat forever.

Argh! Matey!

Yesterday Lilly and I were sitting in the den reading a book when Ryan walked in sporting a pirate costume that he created on his very own. What you see is a cape, belt and a comb tucked into it that is his sword. The funny part is the baseball cap---I wish you could see that it has a Harley Davidson emblem embroidered on it. He's pretty smart don't ya' think?

The Kindness of Strangers.

We had strangers in the house today. Men on ladders hanging new windows and walking around with caulk guns and reciprocating saws. They were here all day and when Ryan got home from school he had to take a few minutes to supervise their work and tell them a thing or two about replacing windows. As I stood behind Ryan interpreting his words every now and again I couldn't help but wonder, "Do they know he has Down syndrome?"

This is a question that I pose to myself nearly everytime strangers meet Ryan. Do they recognize the tell tell signs of his diagnosis, or are they wondering while interacting with him, "What's wrong with this kid?" I have no doubt that they get that he is different. There's the speech delay, the physical features and yes, the strangeness. Today's strangeness was Dolly and measuring spoons. Ryan never goes far without having Dolly near his side and about a week ago he added white, plastic measuring spoons as a companion. He walks around with them, sometimes dangling them in front of his face and then other times Dolly dances with them. I admit it is a bit weird and hard to explain, definitely not something you see everyday.

A few years ago I naively thought that no one noticed Ryan's differences, but as he has gotten older the gap between his abilities and his peer's abilities has gotten wider and wider. I notice this even more as Lilly is beginning to catch up with him. Just the other day I was surprised by her ability to hold a conversation with me using sentences. Ryan's vocabulary is still much larger, but she can use what she does know so much better than he can and I feel sure she'll surpass him by the end of summer.

And the window guys had to notice that yellow rag doll and the white plastic measuring spoons. They would had to have been blind not to see them because while they were working on the outside placing new molding around the three windows in our den, Ryan had his face nearly plastered to the window from the inside with Dolly in one hand and the spoons in the other rattling the two together while he watched them work. They worked for nearly an hour in that spot and Ryan played with his spoons for even longer only taking a break to watch television for a brief moment.

I often find myself wanting to give an explanation for Ryan's behavior and have been known to work his diagnosis into a conversation if the opportunity presents itself. That seldom happens with strangers like the men installing our windows or the cable guy. I figure I'd end up looking like the weird-o so I keep my mouth shut. I also know in the grand scheme of things it doesn't matter what they think of him. I am just glad they take the time to extend kindness to my son by letting him look at their hammers and flashlights and for going along with conversations they don't understand....for that I am thankful.

Ryan and Lilly.

It started out with this shot. Rourk and I were sitting in the den when Rourk tapped me on the shoulder and told me to look out on the deck at Ryan and Lilly. There they were enjoying a few moments as friends and a Popsicle together.

Then Ryan saw me with the camera and started hugging Lilly and they were both getting into this impromptu photo session. I took about 50 shots and love this one minus the yellow garden hose.


So I made them move to the other side of the deck and Ryan insisted on taking one of Giraffe and Dolly hugging him. That's what he said, "Mommy, one of Dolly and Giraffe hugging Ryan."


Once I got away from the garden hose I managed to get this one and feel lucky because by this time they were over saying cheese and hugging each other.


If all I ever get in this world are these two children it will be enough.

Friends.

Star Power.

Last night Ryan performed in his first gymnastics' exhibition at the BMW Zentrum Center. The performance showcased the talented athletes participating in Foothills Gymnastics Special Olympics program and gave those that donated to the BMW Ride and Drive Fundraiser a chance to see their donations at work.

Rourk and I are so proud of Ryan; he did an amazing job last night. The best part--Ryan was also proud of himself and loved the opportunity to perform on stage.

For those of you that live in the Greenville area and have a child with a cognitive disability, please consider getting involved in the Special Olympics program on some level. There are so many programs for children and adults of all ages, but I can't say enough about the gymnastics program at Foothills Gymnastics in Easley. Miss Penny is an amazing woman (energy is probably her middle name). She shows true commitment to the program and it is apparent by the constant smile on her face that she enjoys what she is doing and believes in the Special Olympics' mission.

The other thing I love is the safe environment and how loving everyone is that works and volunteers with the program. And I don't just mean safe because they watch the children closely; I mean safe because every child is encouraged to do their best and their best is always good enough. So please don't let my use of the word athlete intimidate you and make you think your child does not possess the skills necessary to participate because it is not about that at all. It's not a competition; it's about having fun.

And finally, many thanks go out to the Gym Buddies and their family members that came out last night to support the team. I know very few of you by name, but I look forward to getting to know you better. Thank you for your warm smiles, encouraging my son and cheering wholeheartedly for everyone.

There are monsters in the house.

This morning Ryan went upstairs to get Dolly and several other stuffed animals from his bed. Lilly followed him and it was no time before I could hear them jumping and playing in his bed. I went upstairs to check on them and as I was rounding the corner I heard Ryan say, "Shhhh, Lilly. Sleep." I then heard both of them giggle and try their best to make snoring sounds. When I got to Ryan's room they were both in his bed hiding under the covers snickering and snoring.

I then asked, "What are you two doing up here?" In response Ryan threw back the covers and screamed, "Ahhhh, help, it's a monster." "Lilly, it's a monster." They both scrambled from the bed screaming, "Ahhh, help. Ahhhhh, run, it's a monster." as they made their way back downstairs.

All I could do is stand there and laugh and think about the joy my kids bring to me. Moments like this one make up for finding socks everywhere and cleaning up the trillion messes they make each day.

I am strong.

I took Ryan and Lilly outside for a few minutes this afternoon. It was probably around 40 degrees but I decided a bit of fresh air would do us all good. So there we were in the backyard bundled from head-to-toe in gloves, scarves and coats with the hoods pulled snugly around our heads.

As we stepped out on to the deck I immediately regretted my idea because I could feel the cold penetrating my jeans and sending a chill through me. I wished that I had put a movie on instead and encouraged Ryan and Lilly to snuggle together under a blanket in the den, but it was too late to change plans because Ryan and Lilly were already racing across the backyard to investigate Rourk's newly planted trees.

I ventured into the yard and stationed myself so that my back was to the sun. I stood there soaking up the precious warmth provided by the late afternoon rays and listening to my children. They lost interest in the trees within a few minutes and moved on to play a game that I like to call, "I Am Strong." The rules are simple: find a stick, pry rocks or clods of dirt out of the ground and exclaim with arms raised in the air, "I am strong."

I enjoyed watching them play together, but listening to them talk with each other was by far better.

Ryan: "Lilly. Look. Rock." and as he successfully pried it out of the ground, "Lilly, Ryan strong."

Lilly: "Strong Ryan." She then shows him a clod of dirt. "Ryan. Look rock."

Ryan: "No Lilly. That's dirt."

Lilly: "Oh, dirt." As she tossed it over her shoulder and made her way after him.

They talk about big rocks and small rocks and throwing rocks and dinosaurs and there was even a "Whew! That was close.' from Ryan as he sailed a rock through the air and nearly hit Lilly in the head with it.

And they talked about music and I was most impressed...

Ryan: "Lilly. Stop it! Listen." He said this as he cupped his hand to his ear. What he heard was hammers from a nearby construction site. He continued by saying, "Listen. Lilly. It's music."

Lilly: "Music" she nodded in agreement. She then took her stick, held it to her lips and pretended to play a flute with it. She did her best to make a whistling sound while bobbing her head back and forth to the beat.

Ryan followed her lead and turned his stick into an imaginary trumpet and they marched in place while he sang Baa, Baa Black Sheep.

Now that Lilly is getting older I have been giving them more time to just be together without interruptions or interventions from me. I let them play together and fight together and just hash it out sometimes whether that be when they are working out the rules of a game, who's turn it is to play with a coveted toy, or where they will sit at the dinner table. It's my idea of bonding, of knitting themselves together during the good and bad. There will come a day when they will have to depend on each other. My goal is not for this dependence to be one sided. I don't want Lilly feeling as if she is giving and not receiving from Ryan. I want her to understand that her gifts will be different; she may be responsible for guiding Ryan through life and helping him to make decision that most sibling do not have to consider. I want her to understand that Ryan has gifts inside of him, too. He will present her with unconditional love and loyalty, laughter and joy.

He will give her challenges that will test her strength and quite possibly her courage. I hope it is at those times that she can reflect on her childhood and call upon the games they played together and remember "I am strong."

Risky Business or Business Casual?

You decide...

St. James Christmas Pageant

Ryan and I participated in the Christmas Eve children's program at St. James this year. Lilly went to the dress rehersal, but opted out on the day of the program deciding that if she couldn't play Mary she didn't want to be in the program. So much for her theatrical debut, but not to worry Daniel, the little girl sitting in her Mommy's lap, jumped in and took Lilly's place in the lamb-light. Ha!! Lamb-light. Get it? Ha!

Ryan played the part of a donkey, but if you ask him he'll tell you he was a monkey.

Four-Thirty.

That's what time Ryan woke me up. He was sitting outside our bedroom door and when I asked him what was wrong he said, "Mommy, Pee pee."

I stumbled off to the bathroom with him and sure enough his diaper was wet and my experience with a million diapers told me that it was probably the first time he'd gone in it and he'd done so recently. I helped him on the toilet and I then sat on the edge of the bathtub dazed because I had just been jolted from my warm bed and because my son was going to the bathroom at 4:30a.m. Oh, and let's not forget that he told me he needed to do this; the only thing that would have made this better would have been if he'd gone on his own and left me snuggled up next to Rourk in bed.

Unfortunately I couldn't go back to sleep after all of the excitement, so here I am at 6am, showered and with a cup of coffee in hand.

How about a little potty history?

If you have a child with Down syndrome then you were probably told or read somewhere that he or she will be difficult to potty train and they will be trained later than their typical peers. I have read this many times and conversations with other parents have supported what I have read over the years. But that didn't stop me from giving it a shot when Ryan was younger. I now believe all of our earlier efforts were basically a waste of time, but then again, maybe they helped us get to where we are now. Ya see, I don't actually know the answer to this. I have read my share of potty training books, and articles and gotten advice from others and for the most part none of it worked for Ryan. I have come to believe there is no magical system for potty training.

The run down....

When Ryan was around two I started sitting him on the potty. I didn't do this because I expected to train him; I just did it to expose him to the potty so that when we got serious at around 3 or so he'd be ready. He went happily to the potty and he was even successful on occasion. This went on for awhile, but nothing consistent and then I got pregnant with Lilly and I dropped all attempts because I had morning sickness for nearly three months. I was more concerned with making it through the day than about taking my kid to the bathroom. I dabbled in potty training again a few months before Lilly was born, but Ryan showed no interest and resisted sitting on the potty. Resistance is actually an understatement--he refused!! He would literally sit down on the floor and tell me, "No, no, no, Mommy. No Potty." If I pushed him he'd grab on to furniture and door facings like a vice grip as we continued toward the potty. I didn't want to scar him for life so I let it go realizing that Ryan wasn't going to be a potty training prodigy.

I let it go until the summer before Ryan went to K-3 at Berea First. Technically he was supposed to be potty trained to enter the program and that was the staffs' expectation despite the fact that I kept telling them that I doubted he'd be able to accomplish this skill by August. They were nice about it, they never said he couldn't come if he wasn't potty trained, but I still felt an immense amount of pressure to get him trained, so much so that I didn't sign him up for summer school at the Meyer Center because I wanted to have that time to concentrate on potty training.

That summer is my biggest potty training regret because I tried to push something on Ryan when I knew he wasn't ready all because of external pressures. I knew going into the summer that Ryan would not be independent by fall, but I had hoped that he could be on a schedule that would allow him to muddle though the two days per week he attended Berea First. I had a "fake it until you make it" plan in mind. This plan centered around schedule training....taking him to the bathroom every hour or so. We also put underwear on him and I thought having pee running down his leg would get his attention. It didn't work....he still refused to walk willingly to the bathroom thus the schedule idea was a bust and he didn't care when he was wet. At the end of the summer he wasn't any closer to being potty trained, I was frustrated, he was frustrated and I told Berea in a very nice way "take it or leave it." He went to school in a pull-up.

This is as good as time as any to say that I HATE SCHEDULE TRAINING!!! I know that it works for many kids, and I know it's praises are sung by many, but for my child it was awful and the only thing it did was put ME on a schedule and turn ME into a clock watcher. I can't live my life like that and it didn't help that Ryan wasn't buying it.

That's our history and until two weeks ago we had abandoned all efforts to potty train Ryan.

******

An aside....

Last fall I attended a class about Potty Training. The presenter has a son with Down syndrome and much of what he said got my attention. He basically explained the intricate process our body goes through to gain independence on the potty. These aren't his words because I don't remember all of what he said, but for one to be potty trained the mind, body and spirit have to be aligned. He went into the physical process and the intellectual process and how a person has to be able to read all of these signals in order to get it all together. A light went on because I realized that I was trying to get a kid that on most days didn't know he had yogurt smeared all over his face to go to the bathroom independently. I realized that Ryan simply wasn't "in tune" with his body enough to coordinate going to the potty. Sure, he recognized parts of the process, but he was missing just as many parts as he had available to him. The presenter went on to say that a child with Down syndrome is potty trained on average at age 6. Wowza!

******

Two weeks ago....

The plan to try again actually started when we had Ryan's IEP back in October. Potty training came up for discussion so Rourk and I gave a brief synopsis of our efforts up to that point. Everyone in the room gave us their opinions and I for one nodded and smiled a lot, but agreed to give it another go as soon as we had a long weekend to work on it. In the car Rourk and I talked about giving potty training another shot over Thanksgiving. Well, Thanksgiving rolled around and we made plans to go to my cousin's wedding and we decided that would be a terrible time to start potty training; we delayed until Christmas.

In the days leading up to the Christmas break I was skeptical, but hopeful. We bought new underwear, we decided to stay close to home and we vowed to stay calm and just roll with the punches. We threw out conventional wisdom and added Lilly to the mix, too.

Here we are on day 10 and Ryan is wearing his underwear all day, he's going to the potty on his own mostly and he appears to be proud of himself. We have to remind him to go potty---all the time. We took him about ever hour the first few days, but that was mostly for us because we were trying to figure out how long he can hold it--in Ryan's case that about 2-3 hours. By the end of last week Ryan was getting wise to us and he was starting to get tired of the whole thing and since I don't like the schedule training and because my goal is for him to be independent we decided to ease up on him and let him make decisions for himself. Yeah, he's had several accidents and he's gotten mad at us when we've told him to go to the potty, but he's getting it. We've used rewards minimally because they are only as good as Ryan's mood---if he doesn't want to pee on the potty a big bag of chocolate isn't going to change his mind. (If you think my child isn't strong-willed think again.) If he doesn't go to the potty when we tell him and he's creeping up on the three hour mark we take away his privileges...for Ryan that's tv and toys. I simply turn the tv off or take the toy from him and tell him to go to the potty. He protests usually, but so far he wants to play more than hold out to see how far we will take things. I have this sinking feeling he'll have a few set backs when he goes to school next week, but that's just going to have to be okay. The way I see it he has to learn from his mistakes, or an even better way to putting it--- he has to learn from his accidents.

I have decided a few things along the way and the first of which is this: There is no correlation between cognitive development, physical development and potty training. Sure, all those skills have to be there, but they don't guarantee success. My kid has a a great deal of physical prowess--he can turn somersaults, swing upside down on the monkey bars and ride a tricycle, but that doesn't mean he possess the muscle control necessary to pee in the potty on demand. I also think he's a pretty smart kid, but it takes a higher level of thinking to perceive the urge to pee, control it long enough to get to the toilet and then go. That's true for every child, but throw Down syndrome and the pervasive developmental delays associated with the diagnosis on top of that and it is no wonder it often takes longer to achieve independence on the potty. I am not saying it can't happen because I know of a few children (okay just one) with Down syndrome that were potty trained along side their typically developing peers, but I think for most of us it is going to be a process, one that's going to take patience, understanding and a good washing machine.

The second thing I have learned from all of this is as parents we have to stop beating ourselves up if our kids aren't successful when we want them to be in life and I don't just mean potty training. I hate to throw this ole adage in there, but you can lead a horse to water but you can't make them drink....I can take Ryan to the potty every ten minutes, but I can't make him pee. (I can read to Lilly twenty minutes a day, but she's still probably going to like math like her Daddy.) I also think as parents we take this lack of achievement way too personal. I know I have said stuff like, "Well, if I go about it this way he'll get it." or "If I just try a little harder." "If I am more strict with him." "If I had of done this or that then may be he'd be potty trained by now." (If I was more relaxed then maybe Lilly wouldn't be so high strung.) Then I stop and realize how ridiculous all that sounds because they have their own life to live even at this young age.

And the last thing I have learned...do what you think is right for your kids....follow your gut....and don't worry about what others may be thinking or saying--- and by all means don't let it unduly influence your decisions. At the end of the day take an account of the decisions you've made and if you are happy with them let it be enough and if you are not then pick out what you'd do different and be done with it.

Meyer Center Christmas Party.

Identity Crisis.

Right now Ryan is in the den wearing his cowboy outfit, waving a magic-fairy wand with a lime green star on the top at Lilly and telling her to make a wish.

Identity crisis at its best.

More good "stuff."

As you know from my previous post Ryan came home with a drawing that is now displayed in a prominent spot in our kitchen. Today he came home with a note that did my heart good, too. His occupational therapy assistance sent this:

Marcie,

Hi! Just wanted to let you know Ryan had a great day in OT on Tuesday. We had zero behavior problems and he did some good "stuff." After some tracing and HOHO, he was able to imitate a nice square; we also practiced "R" and some good "O" and "+." He was more willing to accept help and seemed proud of the work he had done, even asking others to "look and watch me." It was probably the best OT session overall I've had with him in a year or two.

Just thought you needed and wanted to know! We all need to hear when our "babies" do an extra good job! I told him many times how proud I was of him.

:) Ashley

Way to go Ryan!

R and L

The beach pictures were taken at Sullivans Island, South Carolina, just outside of Charleston.