The Ordinary Life of an Extraordinary Girl

Tommy fell on his snowboard over the weekend. He bruised his ribs, and twisted his knee. Although scared and scary, he will live to snowboard again.

This necessitated Tom going home early, with me taking him. Alex was with her team practicing, so I arranged for a ride for her. Alex is genuinely a sweet and loyal sister, and she cried when the coach explained I left to take her hurt brother home.

I know Alex was upset about Tom getting hurt. But I also believe she is very adept at turning unhappy events into opportunities for herself. Tom’s injury helped her revel in extra attention from her team mates and coaches. I am sure she was able to milk this compassion as much as possible. Sometimes she can be quite the drama queen and I find myself saying “Enough, Alex”.

When Alex arrived home she told me she was going to make a card for Tom. I thought his was a very sweet idea, and since Alex loves to create artwork, it would keep her away from the Disney channel for an hour or so. However, once again my daughter had her own agenda in mind.

Alex created the following note for Tom:

Tom – love you, and I like the hugs from you. Can I ask you something. I need you to wax my skis for me, to help me for I ski to state games to copper. I love you bro.

You always be my brother. I want to say feel better. I want to keep you in CO forever. You are best brother ever and you the coolest bro. Your sister Alex

Tom and I had a good chuckle over this overt request for assistance. Alex does need her skis waxed for the State Competition at the end of March. She has just spent the day skiing, and I’m sure she noticed her skis were slow. Was this good timing or what?

So, my questions are – Did Alex plan to ask Tom to wax her skis anyway? Was Tom’s injury the impetus that made her write the note and thus the favor? I know she loves her brother, and I do believe she was sincerely upset about his injury, but was she using this injury as her request for a favor?

The way Alex’s mind works is so fascinating to me. Sometimes her motivation and desire are crystal clear, and sometimes I am lost trying to figure out the connections she has made. Her long-term memory is phenomenal and she remembers so much that I do not. These memory bytes will show up often in her conversations. I feel she uses this ability to help her justify and rationalize events in her life. This injury and subsequent request to wax her skis will be part of her vernacular for weeks.

In any event, Tom will wax Alex’s skis; mission accomplished. Once again Alex has expressed herself in a clear, logical and legible manner. I am quite proud of her, whatever her motivation – sneaky or sincere!

I have finally done it, and I am not ashamed, or proud. I became so angry, I lost my temper with Alex. Actually, she was the recipient of a five minute tirade from her mother. Good thing I do not have high blood pressure, it would have been compromised by the velocity of my heated rant.

In my defense, my outrage was based on a very deserving event. Just thinking about Alex’s activity makes me nauseous. Alex ate an entire can of frosting, creaming supreme to be exact, and lied about it.

One might wonder why we even had frosting in our house, and (as always) I have an excuse. My sister is in town with her four children. Alex and I went to the grocery store in anticipation of their visit and stocked up on some items we usually do not get. I thought it would be fun to bake a cake with my adorable nieces. We could all have a piece of the cake, never, ever did I think anyone would eat the entire can of icing.

In retrospect, I should not have allowed Alex to be privy to my purchase of cake mix and icing. As always, I hid the forbidden food in a good location. But, Alex knew the little doughboy was living in our house, and she waited until an opportune time to find him. I suspect she had been looking for days, and was finally successful. She certainly isn’t alone enough in the kitchen to do a lengthy search. Locks may be in order before we have more visitors.

I would not have found out about this heinous crime if I had not received an e-mail from one of Alex’s assistants. The e-mail read as follows:

I wanted to let you know that Alex brought in a full Tub of “creamy supreme” frosting for her lunch today. I made the decision to take it from her and will be returning it at the end of the day for Alex to bring back home.

We agreed on the following strategy:

I just gave her a choice of taking the remainder home and giving it to you or throwing it away here. She did NOT want to throw it away. She said she would take it home and put it away. I insisted that she give it to you. She thinks you will ground her. I did not tell her that we had been talking back and forth so that can be up to you. So I will return it to her at the end of the school day for her to give to you. I did tell her I would follow up to be sure you got it.

When I picked Alex up after soccer practice on that dark day, I asked her if she had anything to give me. Imagine my surprise when my daughter with the angelic face looked at me and said “No”. Knowing this was not the correct answer, I asked her about the frosting. Alex’s face changed to that of a conniving, scheming 16 year old. She told me she ate it all after soccer practice.

I like to think I am patient, but to me this was lying, breaking a promise and making a very poor eating choice. At least in this case, I was patient enough to pull over to the side of the road. I have never yelled at Alex before, at least in recent memory. This was yelling. I screamed so hard, Alex was too shocked to cry. Her face became that of a naughty little girl. Looking back I do feel remorseful, but I know I made an impression.

John and I have a good cop/bad cop strategy with Alex. I Iike to “talk” to her and help her realize good choices and behaviors. Most of the time this works, if unsuccessful we send in John as the bad cop. He does the yelling, and that works too. I am good at the good cop role, but have now realized, I am good at the bad cop role too. Based on my recent rant, I should be nominated for an Academy award.

For the past year, Alex has called her father John. She claims this is because he will not let her listen to her favorite radio station incessantly. I believe this is also part of how Alex deals with the bad cop persona, she detaches her father from this person. Case in point – I am now Gary, not Mom. Alex must be seriously upset to change my appellation.

In this case, John played the good cop. John, or Dad as he is now called, and Alex discussed her behavior and crime. They talked about how Alex made her mom so upset, and what Alex would do to be a better daughter. So far so good; Alex has been on her best behavior; showers, dresses like a girl and makes healthy eating choices. She is working hard at school, apologized to her assistant for lying and stopped bugging me about food (temporarily I am sure). She is the sweet 16 year old every mother dreams about.

I am not proud of my temper loss, but perhaps it was for the best in the long run. The power of food is very strong for Alex, and the temptation so great she has not fully realized the consequences of unhealthy food choices. It is one of the few things she feels she can control. I hope, the power of remembering my temper may help her understand these consequences. I really do not think I am capable of losing my temper again for a long while. I sincerely wish Alex remembers my dark side for a very long time.

Disgusting, revolting, repulsive and plain gross are the first words that come to mind when I think about this episode. On the other hand; clever, conniving, cunning and shrewd can also be used to describe this behavior. I always strive to find a leaning in everything; I learned Alex can be ornery, just like other kids. Nice to know!

My sister Mary Beth is seven years younger than me. Our age difference was just enough that she was able to live with me during her summers away from college. We were able to spend a lot of time together before marriage and kids…Ah for the good old days.

Mary Beth is last of my siblings to respond to my overt request for material for this journal. MB (or Mubba as we call her) is very organized and usually would be the first to respond. In this case, I think she might have been distracted by her pregnancy and newborn. Jill joined our family, and her three siblings, in late January; a new baby is the best.

Aunt Mary Beth is Alex’s god mother, and she takes this responsibility very seriously. As she relates, she has developed a special bond with Alex. Alex adores her.

Alex is my God child. To her I am simply Aunt Mary Beth. Although when we are joking I encourage her to call me God. That makes her laugh. When Alex was born I just knew she would be an exceptional girl. She has exceeded that. She is remarkable and truly special to all who know her. To know her is to love her.

On the topic of laughing, Alex is so fun to joke with. She understands all jokes and really appreciates them. What a good sense of humor she has. Last time we were at her house she was into the movie Grease. I tell her all the time she is electrifying, just like the movie. She laughs and says “Oh Aunt Mary Beth you are funny”. Alex loves funny things and really brings so much joy to the room.

As my God child, every year for the holidays I give her an ornament that signifies what she loved of that year. She has received a skier, skater, guitar, student, just to name a few. All have her name and year on them, so when she grows up with her own holiday traditions she will remember what is special for that year. Every year is special to Alex that is a great thing.

Alex is so full of love for everyone and all she does. Recently when we had a new baby my family was talking about who would come out to help. My kids all voted on Alex because as they said she “would love the baby the most”. My kids forgot for a minute that Alex would not be able to drive car pools and had school to attend. But when they thought about who would love on the baby the most Alex was the first that came to their minds. A tremendous compliment to Alex and the love she has for everyone. She feels the love, and everyone around her feels the same love for her.

Alex really enriches our extended family. Without her things would not be as bright, love filled or fun. What a gift Alex truly is to this world, but especially to our family.

Like I tell Alex all the time, she is ELECTRIFYING!

Yes, Alex is electrifying, magnetizing and very lucky to have such a great family.

In our happy little valley there are only a few people with down syndrome. I can only think of five, and that includes the three school systems in our district.

Due to our relative seclusion, we are not often involved in Nationwide or Global events around disability awareness. However, thanks to the power of the internet, e-mail, facebook and the news media, I became aware of the Spread the Word to End the Word Campaign.

The campaign is an “in an ongoing effort with Special Olympics and Best Buddies International, to engage schools, organizations and communities by raising the consciousness of society about the dehumanizing and hurtful effects of the word “retard(ed)” and encouraging everyone to stop using the R-word”. This March 3rd marked the second annual day of awareness and activities on the part of thousands of people across the US.

I hate name calling. It is demoralizing, painful and hurtful. A happy child can burst into tears in a split second,  when accosted verbally. I do not believe this is fair, honest or right. Our children with special needs are no exception, and in many places our kids are the easiest target for verbal assaults.

I found the following on the Special Olympics web-site, it says it all.

It is time we Spread the Word to End the Word™ and build awareness for society to stop and think about its’ use of the R-word. That R-word is something hurtful and painful – “retard” or “retarded.” Most people don’t think of this word as hate speech, but that’s exactly what it feels like to millions of people with intellectual and developmental disabilities, their families and friends. This word is just as cruel and offensive as any other slur. Visit www.r-word.org to make your pledge today.

• Young people around the world are taking a stand and raising awareness of the dehumanizing and hurtful effects of the words “retard” or “retarded” and are helping encourage others to think before they speak.
• Up to three percent of the world’s population have intellectual disabilities – that’s 200 million people around the world. It’s the largest disability population in the world, perhaps you know someone?
• Young people are encouraging everyone to visit www.r-word.org and make their pledge to not use the R-word and have set a goal of reaching 100,000 pledges on March 3, 2010.
• We ask that you help us change the conversation and help eliminate the demeaning use of the R-word from today’s popular youth vernacular and replace it with “respect.” We are asking for your help in creating a more accepting world for people with intellectual and developmental disabilities and all those people that may appear different, but have unique gifts and talents to share with the world.
• We’re asking every person – young and old – to help eliminate the demeaning use of the R-word–a common taunt used to make fun of others. Often unwittingly, the word is used to denote behavior that is clumsy, hapless, and even hopeless. But whether intentional or not, the word conjures up a painful stereotype of people with intellectual and developmental disabilities. It hurts. Even if you don’t mean it that way.
• People with intellectual and developmental disabilities are capable and enjoy sharing life experiences – listening to music, playing video games, watching the latest movies, and yes, having fun – as well as working together toward athletic excellence and mutually enriching one-to-one friendships as demonstrated constantly through Special Olympics and Best Buddies International. They can attend school, work, drive cars, get married, participate in decisions that affect them, and contribute to society in many ways.
• Special Olympics’ Multi-National Public Opinion Study of Attitudes toward People with Intellectual Disabilities, conducted by Gallup, reveals that throughout the world, over 60 percent of people still believe that people with intellectual disabilities should be segregated in schools and in the workplace. This is intolerable. We need massive attitude change now to attack and reverse the stigma that is destructive to the lives of people with intellectual disabilities and a barrier to growth.
• Did you know that by casually using the word “retard(ed)” to refer to an action as less than ideal you are making someone with an intellectual disability feel less than human – whether you mean to or not? Demeaning any of our fellow human beings by using inappropriate words toward any population negatively impacts all of us.

I am not an activist at heart. I do not participate in marches, or run huge campaigns to oust politicians, or overturn laws. However, when anyone in my family is treated unfairly, I attack. Calling my daughter the “r” word is wrong. It is demoralizing, painful and hurtful. End the word, now!

Sneaky, sneaky Alex. She has confiscated my favorite CD, Carly Simon’s “Moonlight Serenade”. It is nowhere to be found. I am not sure I can make it through the day without listening to my favorites, numbers, 2, 9 and 10.

Alex is not the only one who has definite music tastes in my car. I do too, specifically numbers 2, 9 and 10. We constantly battle over her radio station and my favorite CD. Granted, she might be a bit sick of listening to the same three songs over and over again, but I am not. Who is the boss anyway? I want to listen to 2, 9 and 10!

Even though we are working on our conversational skills in the car, particularly related to driving, we still need music at some point. I want 2, 9 and 10, Alex wants 100.5; a real dilemma. One might think we actually argue. Imagine a grown woman arguing with her 16 year old daughter with down syndrome over music, my mother would be mortified.

When Alex gets in the car after soccer practice we always negotiate. I want to listen to 2, 9 and 10, over and over again, Alex wants to listen to 100.5, and sing. She does not sing to 2, 9 and 10, thankfully! This happens every single day.

I can usually strike a “one more” song bargain. This has kept an uneasy peace in the car. But no more….this morning when I got in my car and happily hit the CD player, I was greeted with loud rock music. The Carly Simon CD has been replaced; I did not have 2, 9 and 10 to greet me on my work day. Not sure how I made it through the day, let’s just say I did.

I know Alex took my CD, replaced it with completely unsatisfactory music, then hid my 2, 9 and 10 CD . What am I going to do? I want 2, 9 and 10 immediately! That sneaky, sneaky girl.

Our rural school district suffers from a lack of funding. We also have a peculiar problem here; our valley is so magnificant it is a very popular place to live, and with this popularity comes rising housing costs.

We have a double edged sword; a beautiful area with high housing costs, preventing skilled educators to afford to live here. Our schools lack for special needs teachers, and trained service providers.

To me, this is not an excuse for an inadequate education for our children with special needs. I have discovered I am not the only parent in our beautiful valley who feels our children deserve a better education. I am not alone in struggling for services and equality for my child. Misery loves company, as they say!

As there are no coincidences in my life, I have recently been approached, or have approached, other parents who feel the same way as I do. We have all come to the same conclusion, independently of each other; we need to fix this educational system, NOW! Again, a few of us discovered, independently of each other, there is a nationwide mechanism in place to work with school districts; it is called a SEAC, or Special Education Advisory Committee.

A SEAC is a parent run group; members include school officials responsible for special education, in our case the Assistant Superintendent of the School District, and the BOCES consultant, as well as educators and professionals. The SEAC can recommend policy; identify gaps and work to promote special education in the district. Mainly, we can be a team of people that care about Special Education; a pain in the a** of the school administration. We have banded together, enlisted the support of the school district, and are starting a SEAC.

We recently had our second meeting. The first meeting was informational, and well attended. The second meeting was organizational and also well attended. At the first meeting I was asked to provide a parent’s perspective on a SEAC, and my support. Following are my words:

Whenever I speak about my daughter and her future I get very passionate and sometimes incoherent – so rather than subject you to that -I have written down a few words.

My name is Gary Bender, I have three children, my middle daughter Alex is 16, a sophomore at Basalt High School and has Down syndrome. We moved here four years ago from IL and we love living here.

Our situation is a bit different than some other families with a child with special needs. Alex was diagnosed at birth and this enabled us to qualify for services from day one. This early diagnosis was an advantage over other special children who are not diagnosed until they hit school age and therefore do not qualify for services until the diagnosis is official. Additionally, we lived in a well funded school district. We had all the services we needed and more available to us – Alex received speech and physical therapy services beginning at the age of three weeks. I believe this early intervention has made a huge impact on her present abilities, which has been proven by many many studies related to early intervention.

I now know I was spoiled. I really never had to get involved at all with the district. Actually, they taught me how to best educate my daughter.

As I said, we love living in this Valley – it is one of the most beautiful places I can imagine raising my family. Most of us live here because we want to – we love the outdoor live style, and learn to appreciate our environment. This valley is full of hard working wonderful families; we have a richness of diversity that does not exist in a lot of places. And although we have struggled academically, I do not want to move.

We could talk about the history of Special Education in our beautiful valley – but it won’t make a difference – what will make the difference are the next steps – the future of special education that we have the unique opportunity to create. As you see in this room we have collaboration, our School administrators, our local BOCES representative and a format of successful partnership that is working across Colorado – the SEAC. We also have our strongest resource here tonight – our families. To me, this means we all care – so I think we need to harness our strength, collaborate and create an environment where our children can succeed.

So why am I here in support of a SEAC? Why do I believe a SEAC will make a positive impact on the education of my daughter and every other child with special needs in our school district? The simple answer is because it has to…we cannot risk our children’s future by compromising their education and the services they will need to become successful and contributing adults. The less simple answer is because we can. As evident by the people in this room – we are at a crossroads in our special education system in the Roaring Fork Valley–and as parents we need to get involved.

Some of us might be doubtful thinking we hear too much about budget cuts, lack of resources and inability to hire qualified educators – due to the cost of living in our valley. Certainly these are obstacles – but I believe if we act in a partnership and support each other we can create an environment where we look at the whole picture, the whole system, from kindergarten through transition. Listening to each other we can set the processes and procedures in place that deliver cohesive and worthwhile services to all our kids. To me, this begins with the identification of children that should receive services to the teenagers who qualify for transition services and will not have to leave the public school system until they turn 21.

So – I believe that we can do this – I believe we have the collective knowledge, passion and will to create a SEAC that will make a positive difference in my life, your life and the lives of all of our children. That is my commitment to my daughter – she will have a bright and promising future, just as she deserves.

I believe cooperation is the key to success for all of our kids. We can work with the school district, as opposed to combating the system, for success for our children. I am committed to this philosophy until I am beaten to the ground, bleeding, overpowered  and conquered.

Maybe I am crazy, way too optimistic, or just naive, but I stand by my motto – hope for the best and adapt as needed!

When I look at Alex, I see a beautiful 16 year old girl. She has braces and a bit of acne just like other 16 year olds. It is often hard for me to see the down syndrome in her features, but they are there. I was told this would happen by other parents. Very simply, the down syndrome goes away.

To me, this is a good thing and a bad thing. Alex is just like any other 16 year old; she wants to have friends, and be popular. She can read, write and go to class. She speaks well, eats well (too well) and loves sports. Some days when I wake up I forget Alex is disabled.

But I know Alex is disabled, she has down syndrome, and I need to remind myself she has delays other 16 year olds do not have. As an example, I recently found the following:

The good news; although this love note is not grammatically correct and is missing punctuation, the spelling is perfect and the handwriting completely legible. Alex has expressed her feelings in a logical and clear manner. Really quite an accomplishment.

The bad news; this note scares me to death. What if I had not intercepted this note? Is this one of many notes Alex has written to prospective suitors? Will someone take advantage of her? Are other kids laughing at her because of these crushes? Should I be more active in helping her meet boys similar to her? OMG!!!

Alex’s maturity level is not even close to that of a 16 year old. She wants so much to fit in, but her ability to process and synthesize social nuances is delayed. She compensates by developing huge crushes and writing notes. Alex knows her peers in school have relationships with boys, and she wants a boyfriend just like other 16 year olds. She models her behavior on the Disney channel teenagers.

My children are not comfortable talking to me about their social lives. Despite my incessant questioning, Courtney and Tom will not confess to any boy/girl relationships. Courtney studies hard, so I believe her. Tom, on the other hand, has me convinced he is not interested in girls at all; only snowboarding. John has me convinced all 14 year old boys dream about girls all day long. I am confused.

Alex is no exception, she will clam up at any inquiry into the opposite sex. I am a failure at helping Alex with the nuances of teenage relationships. Fortunately, there is a mechanism in place to help Alex with social issues. I insisted this be part of her IEP.

Alex meets with the school counselor three times a week; twice alone and a third time in a girls group. The girls talk about social issues, hygiene and clothing. Alex enjoys these times, and I have seen improvement in her maturity level and awareness of her behaviors.

As a follow-up to my note discovery, I will talk to the Counselor. She will very gently lead Alex into a discussion around boys, boy friends and appropriate behavior. This may or may not be successful, but at the very least Alex will continue to work on appropriate behavior for a 16 year old. Alex always learns, just a bit slower than her peers.

Yes, in my eyes, Alex is perfect. However, I do need to remind myself; Alex does have down syndrome, and there are challenges that need to be addressed related to that darned extra chromosome. This is always a delicate balance. So I reiterate, we hope for the best and adapt as needed.

This past weekend the Niño’s went to Grand Junction on an outing. Our team was invited by Team Powderhorn to a race event at their local ski area. Grand Junction is located a mere 90 minutes from us, a stone’s throw relative to the other Niño’s events. Parents were invited, but our attendance was not mandatory. We jumped at the chance to send Alex on this short trip.

Cammi and Paul thought it would be fun to make this a team building experience. They left early Saturday morning, raced all day Saturday and spent the night. As an added bonus, Colorado Discovery Ability hosted a dinner and a dance for the athletes. Alex loves to boogie, and as she told me, she spent the night dancing with all the kids. She was in her element.

The weekend respite was nice for us. I love it when Alex has outings. She loves the excitement of the events, the hotel room, and the camaraderie of her team. As an aside, the fact that she won the gold medal was only briefly mentioned. Alex thrives when she is with people similar to her; she is comfortable and confident.

When Alex was little I went to a couple of lectures about older children and adults with down syndrome. Mostly, I was curious to what Alex’s future would hold, but I also wanted to learn about my future. Would Alex live independently? Were there options available for her? How would she progress academically, and socially? It was a great way to begin to think through our futures. My motto; never too early.

At the time I learned, many adults with disabilities, in particular down syndrome, prefer to socialize with people with similar disabilities. Living communities, social groups and continuing education are available for adults with down syndrome. Many of these programs are very successful and the people involved, with and without, down syndrome are happy. To me, this was exclusive, and did not promote integration. This discouraged me.

I struggle with one philosophy; I did, and still do, support inclusion. I believe not only will Alex benefit from being included in as many academic and social situations are possible, so will the “normal” population. I have seen this often; parents and kids relating how Alex has changed their lives; opened their eyes to new things in the world. This is also good for Alex; she uses these experiences to model her behaviors. I do not believe in segregating Alex from the “normal” population.

However, what I did not believe at the time, but know now….Alex shines when she is with other people with disabilities. She can interact equally, both socially and competitively. She feels friendship, pride and success. As the mother of a disabled child, it is rewarding to see your child so happy, particularly since there are struggles in other parts of her life.

I have taken a long hard look at myself and my daughter. What is more important, Alex’s happiness? Or my view of how the world should be? This is a hard reflection for the parent of a child with down syndrome, or at least it was for me. I needed to come to grips with Alex’s dreams versus my dreams for Alex.

In my heart, and most importantly, I know Alex deserves to be happy, just like her brother and sister. It is my job to help create this for her. But, secondly in my heart, I will always know the world is not perfect. I feel a responsibility to change discrimination against the disabled, if only a little, and make it easier for the next generation. The generation before us provided that example, and I will continue. Inclusion, segregation, integration, these are only words; it is the actions that will make the difference.

I will continue to practice what I preach – we live the ordinary life of an extraordinary girl.

When Alex was born her pediatrician used a pediatric checklist for children with down syndrome as his healthcare guidelines. The checklist was provided by the American Academy of Pediatrics and helped the doctor identify recommended extra testing, as well as developmental guidelines. I assume these check lists are used all over the world. They should be.

I appreciated his ability to be able to provide comprehensive healthcare for Alex. As needed, he sent us to all the right specialists: cardiologist, audiologist, ophthalmologist, pulmonary specialist, endocrinologist, nutritionist and others I am sure I have forgotten. We were, and still are, confident in our healthcare. I thank advances in scientific research for this confidence.

One thing I did learn on my own; don’t believe everything you read or hear about kids with down syndrome. Guidelines are only guidelines. All of our kids are different in so many ways. An extra chromosome does create many of the same issues with all of our kids, but that is only one of 47 chromosomes, 2.13% percent.

As mentioned, stated, and declared, I am concerned about Alex’s weight. She is 4′10” and 141 pounds. If she goes on at this rate she will become obese, and unhealthy. It is my biggest concern non-academic concern.

It is a fact; many adults with down syndrome are shorter and heavier than their peers. However, I have met adults with down syndrome who are taller, thinner and healthier than me. Not that I am tall, thin, or healthy, but this tells me that our 46 other chromosomes, as well as our environment, must also play a role in our children’s future stature.

When Alex was born, her weight and height were measured differently than “normal” children. The doctor used the “down syndrome” charts. I believe this is a good idea, as our kids do grow a bit slower then other kids, so a relativity index is important. I found the following charts for girls aged 2 -18:

Soccer season has started. The girls practice in the gym every day after school. I am not sure the snow will melt in time for the first game. I give it a 50/50 chance.

Alex had a good soccer season last year. She played in every game, and although only for a few minutes, she played. She hustled and gave it her all. She was cheered by the fans, and supported by the team. An added bonus; Alex lost weight last spring, and she certainly needs to lose weight this spring. After all , she must be in fighting shape for the Nationals!

This season the three coaches have returned, with an addition, one of the new basketball coaches. The head soccer coach is great, communicates well and is considerate of Alex. I do not anticipate any of the issues we had this year in basketball. But I learned my lesson, never ever assume a good experience will be repeated, intervene before you need to interfere.

John has set up a meeting with the Director of Athletics and asked all four coaches to attend as well as Alex’s teacher, Mr. S. We will meet early next week for 20 minutes. In our allotted time, we will put a plan in place in regards to Alex’s practices, her play time and how we communicate. We will ensure the correct expectations are set for Alex in terms of what she can and can not do (I think she can do everything!), and reiterate the importance of good sportsmanship. We will make sure we are all on the same page, and learn from basketball season. I am confident the meeting will go well, but then again, my philosophy has always been “hope for the best and adjust as needed”.

I found the following while looking for more examples of kids with down syndrome who play high school sports. My arsenal is getting rather large.

Alek Masters would never develop like his peers, never be able to enjoy the same activities as other children his age, the doctors suggested.

Alek Masters throws a discus during a track and field practice on Wednesday. Those who know Alek say he pushes himself to be his best. On Friday, he’ll be honored for that drive with a Yes I Can! Award in Seattle.

Fifteen years ago, Christine and Robert Masters listened as doctor after doctor painted a bleak outlook for their newborn son, who had Down syndrome, a congenital disorder that causes mild to moderate mental handicaps. But the couple did not succumb to the negativity.

“We walked out of that doctor’s appointment pretty much realizing that we were going to do for him what we were going to do for any of our other kids, and that is offer them opportunities, stimulate them and encourage them to do the best they could,” said Christine Masters, of Boalsburg.

On Friday, Alek and his family will be in Seattle, where he will be honored by the Arlington, Va.-based Council for Exceptional Children with a 2009 Yes I Can! Award for his extracurricular achievements.

He is one of 27 children with disabilities who will receive the awards in categories such as academics, athletics and community service.

One of four siblings, Alek has defied doctors’ predictions by becoming involved in a long list of activities: Boy Scouts, marching band, track team, intramural bowling and golf.

Participation doesn’t always come as easily for Alek, a ninth-grader at State College Area High School, as it does for his peers.

Because he could not read sheet music, and had trouble understanding the concept of left and right, Alek took individual lessons throughout summer to help prepare him to play the cymbals in the high school marching band.

He enjoys both the music and the camaraderie with his classmates.

“It’s fun because I get to play with them,” said Alek.

Susanna Lee, his summer band instructor, said that through countless hours of practice, Alek’s dedication never faltered.

“Alek is a truly dedicated learner,” she said. “His attitude makes it impossible for anything to stop him from achieving what he sets out to do. He has such pure passion and enthusiasm for the things he’s doing.”

When Alek expressed interest in joining the track team, his father was curious to see how he’d do. After observing his first practices, Robert Masters knew that his son, who found his niche in discus and shotput, would thrive.

“They were all helping each other out and helping Alek,” his father said.

Kim Gasper, a coach for the Special Olympics of Centre County, said it is only fitting that Alek be recognized for his progress and diligence.

“As an individual, his improvement throughout the years has been nothing short of amazing, but his biggest contribution is not as an individual, but as a team leader,” she said. “He is one of our younger athletes but has become a role model to everyone he comes in contact with, regardless of age or ability.”

One of Alek’s next goals is to complete his Eagle Scout project. He’s thinking about renovating the park across the street from his house.

Long range, his dreams are no different from most people.

“I would like to get a job, make money … live in a house,” he said.

His parents say they’ll keep encouraging him to explore his interests.

“When opportunities come up, we ask him if he wants to do them,” Christine Masters said. “We don’t believe in pushing him out in everyone’s face if it’s not something he wants to do.”

They are many articles similar to this on the internet, and in print. This only goes to prove a couple of things about kids with down syndrome. First and most importantly, our kids are just like their siblings, and their peers. Our kids have the same dreams as other kids, and work just as hard, or harder to achieve those dreams.

One of my honors, as the parent of this extraordinary daughter, is to help educate the world to encourage, not discourage the passion of our kids. I know I have a lot of allies in this quest, and a huge heartfelt thanks to all of them!