Seriously...check this out.

I have been following Sarah's blog for several months now, but this post by her mother made me stand up and take notice. If you have a child with special needs or any child for that matter you need to read this post. I hear stories like this more often than I'd like and all of us need to be reminded of how important it is to have our affairs in order.

I admit I am not as organized as Joyce, but we do have a will and a trust for Ryan and Lilly. We did all of this shortly after Lilly was born and I feel so much better knowing we have our wishes in writing.

What I'm reading.

I bought this the other day after seeing it on Amazon. It was one of those spontaneous purchases that came way too easy thanks to saved credit card information and a couple of clicks on the computer. I have only read the first few chapters, but so far I appreciate the author's honesty and willingness to share truthfully the thoughts and emotions that she had upon learning that her son has Down syndrome. She says many things that we all probably thought but were too ashamed to utter to anyone else. It's been almost six years since Ryan was born and I remember all to well how I felt when I was told that same thing, maybe this year I'll tell you about it.

Setting the record straight.

The other day I was asked, "Don't you think God only gives children with Down syndrome to special parents?" I was speaking before a local Rotary group so I wanted to answer honestly, because over the years people have told me that Rourk and I must be special to have been blessed with such an angel like Ryan. Comments like this one and others like it never sit well with me, but when strangers in the grocery store make them I usually just smile, make some off-handed comment and move along. Sure,I could tell them that Rourk and I are just like everyone else and that our son is definitely not an angel in hopes of dispelling some of the myths about Down syndrome, but people that say such things would just think I am a spoil-sport.

But there at the Rotary club I had a captured audience and an opportunity to set the record straight. This is basically what I said to them.

While I believe that Ryan is meant to be a part of our family and feel thankful to have him in our life I do not feel that Rourk and I were singled-out by God to have a child with Down syndrome because of our extraordinary parenting skills. We're just run of the mill parents, we get it right sometimes and we make plenty of mistakes, too.

So no, I don't think God blesses special parents with children with disabilities. We have all been out and seen a family situation that makes us feel uncomfortable for one reason or another because we perceive that the parents aren't doing a good job or we hear a news story of abuse and neglect and hope the state intervenes appropriately. These same things happen in families that have a special needs child, unfortunately I have seen it first hand. Children with special needs don't get a free ride simply because they have a disability.

I appreciate your question, and I could have answered it lightly, but since you asked I wanted to take the opportunity to share my opinion with you. It's easy in the limited amount of time we have today for me to paint a pretty picture of what it is like to have a child with Down syndrome but that's not always the case.

revelations

Sometimes I have revelations and my most recent revelation is that I naively thought that most people believe the same things I do about raising a child with a disability, but that's not the case. So the truth is I have lots of things I want to blog about here, but I am having to work through how much I want to publicly share because of the judgment that may be passed. And if you think you aren't judgmental, take a moment to think again because we're are all that way from time to time. I am judgmental more often that I want to admit, but I think it is human nature and something we all need to work on improving in our lives. So for now I am keeping quiet, thinking, sorting out thoughts and doing the best I can.


“We can never judge the lives of others, because each person knows only their own pain and renunciation. It's one thing to feel that you are on the right path, but it's another to think that yours is the only path.” -Paulo Coelho

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.

IEP

Ryan has an IEP tomorrow. This one has been called because Ryan is eligible to enter kindergarten in the fall. Rourk and I have decided that Ryan will continue at the Meyer Center, but that still doesn't exempt him or us from having to jump through the many hoops associated with the process.

Anyway, I sat down this afternoon and read the report prepared by the school psychologist. I learned a long time ago to not let Ryan's cognitive, social and physical delays get to me, but admit it was hard to read "very deficient" and "at risk" scattered about the pages of this newest report. I kept my perspective and told myself that on any given day Ryan might respond differently-he might say more, he might say less, or he might choose to say nothing at all. That's just how Ryan rolls!

But I came to the conclusion that if a total stranger read the report they'd think Ryan was barely functional. The Ryan described there is not the child that I know and that's the frustrating part about these types of reports. They're a glimpse; they are a few pages of fancy vocabulary words used to sum up my child and that really pisses me off. Sorry, but that's the best word I could come up with to describe my feelings and believe me I tried to substitute others.

Okay, yes, I know that Ryan is delayed; he's significantly delayed, but I dare say that if 100 typically developing 5 year old children participated in the same evaluation process many if not most would show some degree of cognitive, social, emotional and even physical delay. I also know that Ryan has to be tested (I guess) but all I am saying is that it just seems like there should be a better way.

You want to know the funny part? I had to complete a behavioral evaluation on Ryan. While completing it I struggled with how to respond, because it was multiple choice and I didn't think the answers pertained to Ryan in many areas, but I did my best to be honest and picked the closest one for each question. As a result Ryan was found to be "at risk" for aggression. AGGRESSION! For the life of me I can't figure out what I marked on the assessment that would support this. I am definitely going to ask for clarification tomorrow and even for a re-assessment if necessary. That's ludicrous. If it had said Ryan was at risk of running out in traffic I would have thought that was dead on, but not aggression. Hmmm....I guess that time he pushed Lilly down because she took his drink is finally catching up with him. Big brother must be watching.

You Must Read this....

I didn't ask Anne for permission to link to her post. I openly apologize to her for doing so, but as I write this the clock on the computer just ticked off 10:45pm and my eyes are tired and my mind weary but I am moved by what she has written and feel compelled to share this with you.

Go, go now, click the link....

initiative

Think before you speak....

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.

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.

Education.

I am finding it hard to post something meaningful each day, but I did happen upon this a day or two ago and feel it worth sharing with all of you.

Ryan's education has always been important to me, but my goal now is to research teaching methods and learning styles and to spend more time working with Ryan at home. I don't believe in leaving it all up to the school and I feel it is my responsibility as a parent to be an active participant in Ryan and Lilly's education.

When you have a few minutes check out this page. It has lots of great pre-school activities.

He is different.

I am taking Anne's request to declare my child with Down syndrome as different quite literally by blogging about it. I am joining her by saying, "Ryan is different and different is good."

It is easy to say this today because I feel inspired by her post and the eloquent way her words flow, but she and I have spent hours having conversations about Down syndrome, difference and our struggle with it. She and I didn't arrive at our present level of acceptance overnight that's for sure.

Just last week I shared a decision I made with her, a decision that has taken me days to put behind me as a good one.

In early September our church started a music program for pre-school age children. It is called The Music Club and it meets once a week. The goal is to introduce basic music principles to children in a fun environment. I was excited about the program and took Ryan while Lilly was at school last week. When we entered the choir room my heart immediately sank. My first thought was, "Oh, not these kids, not all these smart kids." There were two families represented in the classroom. The father in the first family teaches at Furman. I didn't know the second family, but the boy was telling the group everything he knows about volcanoes and let me tell you, he knows a lot for a five year old.

Ryan and I took our place on the carpet squares and the class continued with a welcome song. Ryan then started telling everyone over and over his name, saying "Me, Ryan." If you think about it, this was very appropriate. He just wanted to introduce himself to the group, but the kid sitting next to him looked at me and asked, "Why does he keep saying that over and over?" I explained the best I could, but found myself irritated with this little kid, especially after he told me that Ryan was too young for the class.

Irritated, frustrated, intimidated. I guess I was all of those things, but I can say for sure that I didn't want to be there. I wasn't having a good time and I was having and even harder time pretending that I was enjoying myself. The songs and the games were too sophisticated for Ryan. If I hadn't stayed for the group to help Ryan stay on task, he would not have been able to follow the program.

I also want you to know that I was not embarrassed by Ryan, not in the least. I have admitted that he has embarrassed me here before, but that day I felt more like a mother hen wanting to protect her chick. I wanted to hold him close and keep him safe within the confines of our world. I wanted to shelter him from his differences and shelter myself, too.

I thought about this on the drive home. I thought about our world vs. their world. Our world is where disability is the norm and where small achievements are celebrated and heralded. Their world is where disability is different, but not necessarily in a good way. I doubt there is a single parent with typically developing children that would trade one of their children for Ryan. (I am not trying to make their world out to be a dark, ugly place either. Their world is full of good, loving people. It's just a different perspective and I can't fault them for that.) I wasn't feeling pity, on the contrary, it was one of those it-is-what-it-is moments.

I didn't take Ryan back to The Music Club. Did I wimp out? Was I selfish? Maybe, but a music program at St. James isn't going to make or break my child. I didn't ruin his life and all chance of becoming a music virtuoso by not going back. I simply made mine a little easier. I reduced my stress and I took myself out of a situation that didn't make me feel good.

I have accepted "it-is-what-it is", some may even say I have embraced it, that I don't want more and that I don't want the challenge of tackling "their world." That's not it at all. It is about what Rourk and I think is best for Ryan, what we think is best for Lilly. It is about what we think is best for our family, our marriage and our life.

Check out the Buddy Walk pictures that Magic took.

I knew from the first e-mail I received from Monnie at Magic 98.9 that she is a wonderful person and so is the crew that attended the Buddy Walk with her. See, they put photos of the Buddy Walk on their web site.

You can find them by clicking HERE.

Day Three.

Oh my! I hope this isn't a long month of blogging. It is only day three.

I do plan on writing something meaningful, maybe even thought provoking, but I am just too tired to come up with it right now. The day started with Ryan's IEP. It then took two hours and then Rourk and I had a bunch of errands to run. We got home this afternoon just in time to get Ryan off the bus.

So, my post for today is more Buddy Walk pictures. Go to Susan Brewer Photography and click the client section and use "buddy" as the password. There are many great pictures of our walk. Susan did an awesome job.

I'll give it a try.

Last year I comitted to Get It Down and I am going to give it a try again this year. Can I blog everyday in the month of October? It may be a lot of jibberish, but I'll give it a shot.

Gifts.

In the weeks leading up to yesterday's Buddy Walk I didn't have much opportunity to blog; I was busy trying my best to keep registrations in order, deposit money and finalizing the last minute details. I was spending my computer time sending e-mail messages to Anne and talking with her on the phone to make sure we had all of our bases covered. What little time was left after all of that was spent throwing Pop Tarts and Kentucky Fried Chicken at my family.

It is stressful to throw a party for 500 plus people, but that is exactly what it was. It was awesome party and I felt like I was given an amazing gift from all of those that participated, volunteered and planned it. I was tired at the end of the day, a bit sore, and sunburned, but I was proud of our accomplishments.

I was given the gift of friendship. Thank you Anne for the hours of conversation, for helping me find my way during the times that I struggle with Ryan's disability. Thank you for all that we will do in the future for our two beautiful boys. (I look forward to movie nights when they are 16.)

I was also given a gift because I was able to spend time with my family. Last year I didn't even know my kids were there. I saw them out of the corner of my eye a few times, but I was so busy with t-shirts and registration and just keeping things organized that I missed seeing Ryan. I was upset about that for months. This gift of time was given to me by the volunteers that came and helped us set-up, pass out t-shirts and man the registration table. They were pros!! I can't say enough good things about them. They were there for us, did anything and everything we asked of them. One of the high school girls told me that she felt like she should be doing more and I couldn't find the words to impress upon her that she and her friends were the reason everything went so smoothly yesterday and because of them I got to watch Ryan and Lilly dance and I got to actually eat a hot dog and enjoy myself.

I also have pictures thanks to Granny Freeman, Katie, friends and Susan Brewer. The pictures will help me build memories of moments that I missed.

I was given affirmation that what we do at the Buddy Walk is worth all the time and energy put into it. Ryan affirmed that when he told me he was having fun and that he liked to dance to the loud music. I was given affirmation as I watched Ryan and Lilly stand side by side on the stage as brother and sister. I was given affirmation as I watched Archie sway to the beat of the music and smile as his mother and therapists gathered around him for pictures. I was given affirmation as I watch Jennifer hold Evan out so he could receive his medal. I was given affirmation when Grace opened her butterfly and watch in amazement as it fluttered away. I was given affirmation when the countless number of people walked by and told me what a wonderful job we did. I was given affirmation when TK, Monnie and Blake all said let us know if they can help again. I was given affirmation when Michael Boyce told me that he thought there were six to seven hundred people there, maybe more.

The day was filled with moments just like the ones I've describe above. They are gifts and I thank all those that gave them to me.

Tk and Monnie to emcee the Buddy Walk.

I am excited to announce that Tk and Monnie from Magic 98.9 are going to be the emcees at this year's Buddy Walk.

Okay, I have a confession, I don't actually listen to the radio much but that's only because during my brief morning commute I am listening to Toddler Tunes. This morning Ryan had to hear There's a Hole in the Bucket ten times. It would finish and he'd say "Again, Mommy, Again."

But anyway, I am still excited that they are coming. Monnie has been great and very supportive of the walk. I can tell from the conversations that I have had with her that she and Tk are going to be lots of fun. You don't want to miss it.

It is Buddy Walk time again.

Dear Friends and Family,

As many of you now know, it has become an annual event for our family to participate in
the Down Syndrome Family Alliance of Greenville’s Buddy Walk. The Buddy Walk was
developed in 1995 by the National Down Syndrome Society to bring together a wide
range of concerned individuals to reach out to friends, family and co-workers to promote
awareness and inclusion for people with Down syndrome and to raise money for research
and education programs. Last year our local walk was a wonderful success and Team
Freeman collected over $2,500 in donations. I am proud of that and the support all of you
showed Ryan and our family.

What I have not shared with you is that I was a co-chair of last year’s event. I went into
planning the walk with one goal in mind and it was to raise money. The event did raise
over $25,000 to benefit our children and families. This amount is unprecedented in our
community!

This year I am once again a co-chair of the Buddy Walk, and once again I want to raise
money for the Down syndrome community. Fortunately, though, the pressure isn’t as
great as in the past. My goal this year is to focus on awareness and have as many
registered walkers as possible on Team Freeman and at the walk.
Many of you are wondering how you can help because maybe you live out-of-town, or
even out-of-state. If that’s the case, I want you to register as a walker anyway because I
want to add your name to the Team Freeman banner that we will carry on walk day. I
want to send you a Buddy Walk t-shirt, and I want you to wear it and when given the
opportunity to share, I want you to tell people that you know this amazing child with Down
syndrome and he’s made a positive impact on his family as well as all people who know
him.

If you live in the Greenville, I want you to register and walk with us. I want you to
celebrate the lives and the accomplishments of all people who have Down syndrome. I
can’t think of a better thing to do on a Sunday afternoon in late September than that.

It is easy to register, just send me an e-mail requesting a brochure and I'll send on to you. It has
all the details you’ll need to sign up to be a member of Team Freeman. If you'd prefer I can mail a brochure to you. If you have questions just ask and I’ll be happy to answer them for you.

Thank you for your support,
Marcy

P.S. You can also give an online donation at First Giving.

John Mark Stallings

I received an e-mail this morning from the Down syndrome support group in Birmingham; the message shared that John Mark Stallings died a few days ago. My immediate thought was the John Mark that I know is too young to have died, maybe the person in the message is someone different. I searched the internet for an obituary for him and learned that indeed my John Mark had passed away on August 2nd. My thoughts drifted upstairs to Ryan sleeping soundly and my heart ached for Gene and Ruth Stallings because I felt pangs of grief as I thought about Ryan's mortality, but I know they don't compare to the grief Gene and Ruth are experiencing at this moment.

I talk about these people as if I know them, but I don't. The reason this family is dear to me is because they were the first ones to share the beauty and fulfillment that one can receive by having a child with Down syndrome. They did it through the book Gene Stallings wrote titled Another Season.

When Ryan was born we left St. Vincent's Hospital with a copy of Babies with Down Syndrome.
It's an okay book. I have recommended it to many parents as a practical guide to Down syndrome, but I personally don't like the book much. I believe parents should read Another Season, too.

I don't remember exactly when I read the book for the first time, but I am pretty sure it was within the first three months of Ryan's birth. It was definitely during a time when I was unsure about my feelings toward Down syndrome. It was when I was feeling lost and trying desperately to find a place for this diagnosis in my life. I was inspired and hopeful by what Gene had to say about the impact John Mark had made on him, his family, and everyone that had ever met John Mark for that matter. I was comforted by his words and thought-- This burly, manly, football guy has accepted his son, then surely I can. He's telling the world about John Mark; I can somehow manage to get through the day.

Another Season is on a shelf in Lilly's room. I think it is ironic that I saw it there just a few nights ago when I was sitting on the floor reading with her. That night was probably one of the first times I had thought about the book in years. I fondly picked it up, flipped through a few pages and then placed it back on the book shelf thinking I should keep it for awhile longer. Now I am thinking about reading it again, reading it this time to renew John Mark's spirit and to remind myself of his life and the difference it has made in me.

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Gene Stallings, a star football player, championship coach and tough enough to be one of Bear Bryant's legendary Junction Boys, probably used to dream of a son who would be an impact player, who would change the world, make a difference and someday maybe — just maybe — wear a National Championship ring.

"I prayed to God that He would change Johnny, but He changed me," Coach Stallings once said in a speech. He added that if God offered him the choice of going back and having a "perfect" son without a disability or having Johnny, "I'd take Johnny every time."

Can't get one past Ryan.

Ryan and I just finished eating lunch together and as he was eating the last of his grapes he said, "Mommy. Ice cream, pleeeeeease." It actually took him an entire three or four seconds to draw out please.

I then responded by saying, "I am sorry Ryan, but we don't have any ice cream. It is all gone."

He continued by jumping up from his seat and saying, "This way mommy. Ice cream this way. Car. Pleeeease."

I laughed and told him we weren't going to get ice cream right now. He put his hand out in a stop-sign fashion and said, "No, No, Mommy. Ice cream. Car. Pleeeease."

I have to admit it took everything I had to keep from saying yes and loading him up for a trip to McDonalds, but I steered him into the den and told him to watch Bee Movie for the 1ooth time.

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This story is significant because up until a few months ago I had never had conversations like this one with Ryan. He has always spoken about what is right in front of him. His conversations were concrete and in the here and now. Six months ago he would have never told me to get in the car and go get ice cream. It's exciting to see him progress and understand the power of speech. It's even more exciting to hear him go from single words to actual phrases to communicate. I swear I thought he would never get past that point, but slowly he is doing just that.

Way to go Ryan!!