The Ordinary Life of an Extraordinary Girl

For those of you who do not know the story of Jerry and Judy Horton and their dream to find an appropriate living situation for their daughter with down syndrome, it is worth the read. The story of the creation and continuing evolution of Down Home Ranch in Elgin, Texas is inspiring. It is also something I would like to create here in the Roaring Fork Valley.

The idea to create a ranch based life style for Alex and her peers is a massive undertaking, but would be the most worthwhile project I have ever completed. Despite the fact we have no land, no money and no secret angels, I know there is a need. And as they say “where there is a want there is a way”.

Molly, the Executive Director of WindWalkers, the equine assisted therapeutic riding center where Alex rides, and I are together on this mission. We are currently looking at other residential communities to research best practices and learn how others have succeeded. For that reason Alex and I went to Ranch Camp at Down Home Ranch.

Ranch Camp is one of the ways Down Home Ranch raises money for operating expenses. There are eight one week summer sessions, separated into adult and teens as well as on-going weekend retreats. Alex went as a camper and I went as a volunteer. It was worth every nickel.

There were almost 40 campers in Alex’s session, divided into five teams. She was on the red team with seven other campers and two counselors. Every camper had some sort of a mild to moderate disability, and about half the campers had down syndrome. This did not stop anyone or anything, just like a camp for “normally developing teenagers” these campers had activity filled days and nights. There was paintballing, archery, swimming, crafts, horseback riding, basketball and line dancing. Yes, in Texas line dancing is big, and it certainly was a hit with Alex, actually anything having to do with dancing works for Alex. She already is talking about next year!

The campers slept in big bunk houses, or lodges with their counselors. I slept in one of the lodges with three CITS, 16 year old girls who volunteered for a few weeks of their summer at the camp as kitchen aides. I was impressed by these CITS, who were thrilled to be working long hours for free so they could interact and participate with the campers at Ranch Camp. In the evening I listened to these three girls talk about the campers and how impressed they were with their abilities. It made me realize that the sooner our children without disabilities are introduced to children with disabilities, the sooner acceptance and inclusion is instilled into our population. What an example for others these young teenagers are.

During the week I was able to observe the Ranch and meet some of the 20 “ranchers”; the young adults with intellectual disabilities who live at the Ranch. I was also able to talk to both Jerry and Judy Horton who were happy to share their experiences, offer advice and provide encouragement. I learned about the funding issues that never go away (as I suspected) as well as the kindness of so many who help make dreams come true.

Mostly, as was my goal, I learned about the evolution of this dream for a fulfilling and satisfying life for a baby with down syndrome to a world renowned model of residential living for adults with disabilities. It was inspirational and motivating. So my next goal for myself is to keep the faith, plow ahead and figure out how to tell a story that will make people want to support us. Any ideas?

Okay I admit it – I have missed writing about Alex. I miss the comments I received from other Moms, Dads and readers. I miss looking back at my work and reliving our triumphs and challenges.

So as I mentioned before, I will continue to write, perhaps not as much, but as honestly as I can. I will share frustrations and successes, and as always I will recount our truths in the hope that our story can help others with young children with down syndrome.

Alex had a great 16th year of her life. She excelled at sports, competed in the National Special Olympic Games and had a great summer. One of our highlights was attending Ranch Camp at Down Home Ranch in Elgin, TX. Alex was a camper and I volunteered (as getting back and forth to Texas from rural CO is not so easy). This amazing camp is for children with disabilities, and in this arena all kids are equal; Alex loved it. I will write about this experience in the near future, it really is quite rewarding to see your child interact with children with similar abilities; it instilled confidence and assurance in Alex.

School was not so good. We struggled with communications and appropriate levels of education. However, when I look back on this year I will try to remember all the successes. We created a team and forged an alliance with the School District. However, junior year has started and I have the feeling I am back at the drawing board. I guess it is time for the b**** to return, not my favorite personality but sometimes necessary.

If you are so inclined, I have published the first year of our blog; Alex’s 16th year of her life as an e-blog. Feel free to download and read, or start at the beginning of this blog. I appreciate your support in reading about Alex, as well as our challenges and triumphs through these past 16 years.

More to come…………..

As I finish this year long narrative on Alex’s live I want to tie up some loose ends.

 Alex is back to her normal self, a 17 year old teenager with mood swings. She is basking in the aftermath of her success at the National Games; our local paper printed a follow-up story and Alex is going to be honored by our town and at a town council meeting in a few weeks. People we see on the streets congratulate her and she loves her status as a local hero.

 The music and Disney Channel are on often and the food battles are back. I take Alex everywhere I go, as I do not want to leave her at home with food. This weight issue, although currently stabilized, has the potential to become a health problem. To the best of my ability, I will fight this.

 We miss grandpa and talk about him often. To bring up his name evokes tears and sadness from Alex; we try to talk about the good memories, of which there are many. We miss many other people who passed through our lives, and our families. We have many happy recollections to call upon when Alex gets sad; especially of our week in Lincoln

 Our tiny frogs, James and Jack are getting large; we are surprised they are still with us. We miss our beloved dog Lucy. The kids and I still want another dog (John does not) so our pleading for a pet has reached the cat compromise stage. Alex is not getting a horse.

 I have not found a job, although I have been on a few interviews. I am enjoying my freedom, but this cannot last. The real estate market has not picked up and it is possible John may take a job in a different state and commute home once a month. As we say “it is what it is”. Anyone want to buy a house in the Aspen area?

 The final loose ends I want to tie up are related to the two questions I have been asked this past year:

 Why did I start this blog and why am I planning to stop?

 These are great questions and after some thought as well as a number of draft responses I have come up with the following answers.

 Why did I start this blog?

 I set out to document this past year in Alex’s and our lives. Participating in the National Special Olympics can be a life changing event for a teen with disabilities, as well as her family. I hoped to keep a record of this momentous event in our lives.

 My overriding vision was the belief that we have a story to tell. A story of an unexpected birth and the magic that came into our lives 17 years ago. I never expected to have a child with special needs; no one does. This journey has been challenging, difficult and demanding. It has also been an opportunity to have a life I never knew existed and has been rewarding and fulfilling. I would not change anything about our family and Alex.

 Very simply, I want to educate others. This is a lesson for families with young children with down syndrome, as well as all families who know people with down syndrome. This lesson – people with down syndrome are just like their peers; same dreams, same hopes for the future and same challenges. It is my sincere hope I have accomplished this.

 Why do I want to stop this blog?

 This is the question have I have thought a lot about. My goal was to create a body of work that could be used to educate others; a project with a beginning and an end. This does not mean I always, or ever, do the right thing for Alex. Many times I take the long and curvy road, but I have learned to stay on the path and commit to a direction. Sometimes I am too optimistic and sometimes too pessimistic, but I always believe I can make a difference.

 I have had over 15,000 hits in these 11 months, with hundreds and hundreds of readers from across the world. Many of these readers have sent me comments of support and encouragement. Some mention younger children with down syndrome and are intrigued and even inspired by Alex’ successes. I am humbled by these remarks.

 I have learned over the year that I like writing and especially writing about Alex. I find this very surprising and even cathartic, as I was never a person to keep a journal. I have discovered I would like to continue this journey through Alex’s life, but I also want to close out my project.

 I have come up with the following plan: I will continue to document Alex’s life, mostly important events, successes, and challenges, as Alex moves through high school, the transition program and adult living. I will do this in a chapter format and call the next group of entries “The Ordinary Life of an Extraordinary Girl – Junior year”.

 Thanks for all the words of support. I hope our story can make a difference in the life of a young baby with down syndrome; today and in the future.

As promised, this last reflection is mine. I am missing a few reflections I requested; but I can respect that others do not want to share their inner most feelings in a public forum.

 Not me however, here are thoughts never voiced, and perhaps never recognized before. This year of writing has brought me to a new level in my emotions around Alex, as well as having a child with down syndrome. I do not mean to offend anyone, rather tell my truth. Here we go:

 When Alex was born I felt like a failure. I could not believe I had created a “flawed” baby. I was embarrassed, humiliated and ashamed. I did not want to tell my parents or parents in law; I felt they would blame me for having a baby with down syndrome. I did not want to tell anyone that in most cases the extra chromosome comes from the mother; I felt like I had let down my husband, my 15 month old daughter and my family. I was scared to death.

 This lasted for about three days. In that time I met Alex, talked to professionals and told my family. Alex was beautiful and looked just like any other newborn I had ever seen. Granted, she did have a few odd features, and we could tell she was different, but she still had features of our family. She cried, ate and pooped; she didn’t look like an alien and we loved her.

 The professionals we talked to explained a lot about down syndrome to us. I remember one pediatrician who came into my room at the hospital and asked me if I knew anything about down syndrome. I remember saying to him all I knew about down syndrome was “they all looked alike”. He was incredulous and said to me that was ridiculous and that was the same as saying all white people look alike. I felt like I had been slapped and vowed at that moment to never make gross generalizations again.

 My family was incredible. My mother came out on the first plane from New Jersey and stayed for almost two weeks. The first week while Alex was in the hospital we did a lot of research; read books and went on a field trip to a local residential facility called Lamb’s Farm. I remember walking into the jelly and jam store on site and talking to a 20 something girl with down syndrome. After I said hello she spent about 10 minutes talking about her love for country music. She was polite, charming and poised. It was eye opening and encouraging.

 The rest of my family, as well as John’s, were supportive and helpful. I imagine it took everyone time to get used to Alex, but there has never been any overt signs of disappointment or disapproval. She is fully accepted and included in both our families.

 Once we got used to Alex, and the idea of having a baby with down syndrome we never looked back. I have written of many of our challenges and triumphs. I have talked about the magic of Alex; the pure love she has brought to our lives. Her struggles to be like her brother and sister and her frustrations when she cannot be. I don’t claim it has been easy, but it certainly has not been hard.

 I know I have said this before; Alex has enriched our lives in a way I never knew existed. We have learned compassion, caring, and acceptance. We have met incredible families who have children with special needs, as well as many others with special needs. We have met caring and skilled professionals. I feel honored to have this opportunity in our lives. Alex has touched many people in her life and will continue to do so.

 One final thing; many people say to me that Alex is “high functioning”. I do not think this is the case at all. We have been lucky with Alex’s health; many children with down syndrome who are born with serious health issues can be seriously delayed while operations and other medical interventions take precedence over early intervention therapies. These kids do catch-up but at a slower pace.

 I think in today’s world, when we expose our children with special needs to opportunities and experiences that all children should have, we fulfill the promise of their future. I did not do anything with Alex that I did not do with my other kids. Yes, I am pushier and more insistent on inclusion and equal opportunities, and yes, I monitor her education aggressively. But just like Courtney and Tom, Alex has done the rest, and all she needed was an advocate.

 In many ways, I feel like the guardian of this extraordinary individual, the steward of her life, the protector of her magic. I am not sure what I did in a previous life to have Alex included in my current life; but it must have been something great. I am not sure I can top it!

Alex is in a foul mood; she has been this way since we picked her up on Saturday at the Special Olympic Office.

 We arrived at the Office before the bus. It was nice to greet all the smiling athletes as they got off the bus. Alex was no exception, she was grinning ear to ear. She was able to hug or say goodbye to everyone on the team and yelled “see you all later” from the car window as we pulled away.

 This was probably the last smile I saw. We have been home for three days and Alexis grumpy, rude and obstinate. She does not want to go swimming or visit friends, two of her favorite activities. She spends the days in her room listening to music, which is her therapy and medicine.

 I know exactly what is happening with Alex. I have seen this many times before, but this is the most extreme. Alex spent 7 days as a VIP, the center of attention and a valued member of the Team Colorado Community. She was praised, respected, and honored. Now she is home and back to her normal life. She knows this is not the reception she will have when she starts school in four weeks. The adrenaline that kept her going has been depleted. She has crashed.

 I really am not surprised by this reaction. I wish it were different; I wish we were basking in the aftermath of a successful and fun filled week. We will, but only after Alex has decompressed. I often try to predict Alex’s moods and I more often than not, I am successful. I know from experience her ability to filter out happiness and sadness is different than the rest of my family. She does not seem to be able to examine the why behind her moods and only reacts to the feelings. In many cases, when disappointed Alex can become physically ill.

 I know this is part of the wirings of this extraordinary person. Sometimes she is so transparent and pure it energizes me. Sometimes she is so rude and obstinate is frustrates me. In any case, she is true to herself and her emotions. She is honest and untainted by the world around her. Perhaps there is a lesson in this for all of us.

 I know Alex will “recover” in a few days. The proud athlete who competed with her best times ever at the 2010 National Games will return. As is the case with almost everything in Alex’s life; it just takes a little longer.

The GPS says we are 158 miles from Denver. That’s about 2 hours and we will be early to pick-up Alex from the Special Olympic Office. We sent Alex back on the bus with her team, and although she had the option of coming with us, we knew she would prefer to ride back with the team.

 It has been an incredible week; one which met my expectations and more. The athletes, coaches, volunteers and Lincolnites (I learned this is a real word) raised the bar. The host city to the next National Games in 2014 will have a tough time improving upon the show we had in Lincoln.

 Despite Alex’s medaling disappointment, which I suspect will have disappeared by the time we pick her up; I know she had the time of her life. She spent seven nights on her own and learned about independence. She was a valued member of a team and respected for her abilities. She made friends and felt like she was part of the group. I know that as much as she is included in sports at school, she knows she is still an “outsider” and not as good as the other athletes. This is not the case with the Special Olympics.

 Alex will remember this week for the rest of her life. It may take a while for me to hear about the entire week as Alex relates events in her life in snippets. She does not sit down like my other kids, and tell me a complete story at once. I believe this is part of her speech skills; processing long narratives at a single time is difficult. The thoughts are in her head, but the ability to process these thoughts into many sentences is tiring. She takes the easy route; and relays her life to us in short tales. I applaud her ability to compensate for something which must be challenging for her.

 Alex and I have a little litany we go through when we have not seen each other for a long time, or even a short time.

 Alex – I love you

 Me – I love you more

 Alex – I love you best

 Me – I love you bestest

 Alex – I love you est

 Me – I love you er

 Alex – Mom that is not a word

 I cannot wait for 4 hours from now when I hear this again.

We had the pleasure of attending the Lincoln Salt Dogs vs. the Wichita Wing Nuts minor league baseball game while in Lincoln. The game was in the beautiful Haymarket Stadium with a warm breeze and comfortable seats; a really nice way to spend the evening. Unfortunately for the locals, the Salt Dogs lost 5-4 in the 9th inning.

While at the game, I overheard a conversation between two men who had volunteered at the Special Olympics. They talked about how inspiring the Games were and bragged about their events. One of the gentleman said he thought all athletic teams could learn from the Special Olympic athletes. His words were something to the effect of “I wish the Special Olympic athletes could teach regular athletes about sportsmanship and competing with happiness.” Of course, with my new extroverted personality, I immediately chirped in and bragged I was the mother of a Special Olympian. They were dutifully impressed.

This exchange reinforced something I have felt for a long time, tired to articulate at times, but need to reiterate, the Special Olympics would not be what they were if it weren’t for the hard work and dedication of our Coaches. These volunteers spend countless hours working with the athletes, and in the case of Alex’s coaches celebrate her successes, but also deal with her disappointments.

Alex’s coaches at home are Paul and Cammi; they have known Alex for almost four years. They have built a great relationship, supporting Alex when needed, but also working with her on good sportsmanship and appropriate behavior. At times they have been tough with her, and she has pushed back, but this is necessary with Alex. Especially when she is not a gracious fourth or fifth place winner. She looks up to them and respects them; they are part of her family.

Coach Larry is the coach for Alex and her three track and field teammates at the National Games. The coaches were chosen by lottery and experience. Larry has been involved with the Special Olympics for seventeen years; as a parent and a coach. He spent a weekend with the athletes in April and then met up with his team on the bus to Lincoln. I cannot imagine a harder job, melding four athletes who do not know each other or the coach, into a cohesive team. Larry did this.

It has been such a pleasure to see how Alex’s team supports each other. When Alex was disappointed over her finishes the team rallied around her and encouraged her. Larry told her she should be proud and she had done a great job. When I tried to tell this to Alex she cried and whined. I should have just stayed away and let the team philosophy play out. I only made things worse, and learned to stay away. Alex listens to her coach, not her mother, which is the way it should be.

Larry took a week’s vacation from work, and away from his family, to spend the week in Lincoln with four athletes he barely knew. He juggled schedules; both for the athletes and the parents, and kept our kids energized and excited. He made sure the athletes stayed hydrated, fed and slept well. He also dealt with crying (Alex), disappointment (Alex) and painful bug bites (Alex). He was smiling whenever we saw him, communicated with us as needed, and was the best cheerleader there. Team Colorado had an awesome Coach in Coach Larry.

These selfless volunteers who coach for the Special Olympics are our unsung heroes. They are proud of their athletes, yet humble about what they do. An incredible group of people; we should all aspire to be as extraordinary as Special Olympic Coach.

The Closing Ceremonies of the 2010 USA National Games were just as inspiring as the Opening Ceremonies but in an entirely different and positive way.

We arrived at the Stadium to find the athletes already seated. I must admit, at this point, we were okay to not sit through the 1 ½ hour of the State by State introduction of the athletes we had experienced at the Opening Ceremonies. The energy was just as contagious as the first day, and I could feel the pride on these 3,600 plus athletes.

 The Closing Ceremonies included lots of music, a video recap of the week, the lowering of the Olympic flag and the dousing of the torch. It was one big celebration as evidenced by the dancing athletes and joy filled audience.

The difference in content was the introduction of Project Unify. This initiative is a youth led movement to activate young people across the country to become agents of change; to promote respect, dignity and advocacy for people with intellectual disabilities by utilizing the programs and initiatives of Special Olympics.

It was started by youths and for youths on the national and the grass-roots level. Local projects that meet Project UNIFY objectives are supported through grants for local Special Olympics Programs and funded by the U.S Department of Education.

The movement was introduced at the Closing Ceremonies by a charismatic young man who attends Notre Dame. He was also one of the founders of the spread the word to end the word campaign. This youth led campaign was established in 2009 during the Special Olympics Global Youth Activation Summit. Project Unify was established as the next step at the USA 2010 National Games Youth Activation Summit that was held in Omaha this past week. The presentation was well done and powerful.

As we left the stadium I felt thankful. Thankful we had been able to participate in the 2010 USA National Games and thankful for the Special Olympics. Thankful for the volunteers and the coaches.

I feel so positive about the future. I believe that someday soon, people with intellectual and physical disabilities will be more included in our communities. If we educate our children about acceptance and inclusion they will grow up to be adults who do not see differences in people; only promises. I am hopeful and optimistic.

As John says (quoting someone else) – “It takes a village”, I want everyone I know to be part of that village. Come join us.

I really am not a fanatic fan. I do not wear shirts that advertize where I am from, or tote signs with my daughter’s name. Generally, I like to keep a low profile; an observer rather than a participator. But this week, something huge has happened in my life and I am celebrating. All my introverted personality traits have gone out the window. I am the biggest fanatic fan I know and am proud of it. Even my other kids and husband (who does share my personality traits) have joined in the celebration.

 If anyone had told me 17 years ago that I would be in Lincoln, NE with my daughter with down syndrome representing the State of CO in the National Special Olympic Games, I would have told them to get lost. I hope I was gracious with those well meaning folks who told me they knew someone, who knew someone, who had a child with down syndrome and shared stories of bright and promising futures. To be truthful, as well meaning as these folks were, it got old fast. John and I needed to research and learn ourselves about our newborn daughter’s future. Turns out these well wishers were right.

 Alex got a 5th out of 6 in the shot put and 6th out of 6 in the 200 M run in the finals today. She was disappointed, almost angry. She did not consider all the hard work that brought her to Nebraska, all the events she won, all the shot puts she threw. She did not take into account that she qualified with personal best scores; throwing her into more competitive divisions. Alex did not think about the fact she was competing with the best athletes in the country. She only thought about the fact that she did not win a medal, merely a ribbon.

 Alex proudly stood during the awards ceremonies, accepted all the congratulations from her teammates and then asked us to hold her ribbons. She would not look at me however, and hid her face from my camera. Alex does not want to wear a 5th or 6th place ribbon, she says she is embarrassed.

 I, make that we, could not be more pleased and proud. We know how hard Alex worked. We know the heat and humidity of Nebraska Is not something Alex has experienced. We know the bug bites on her ankles hurt and the excitement of the entire event can take its toll on the athletes. We know Alex is probably not sleeping enough and trying as hard as she can to be an active participant. She is probably over eating.

 We are not embarrassed; quite the opposite, we are honored. Honored to have Alex as our daughter, honored to be a part of the National Special Olympic Games and honored to be raising such an extraordinary girl!

My sister, her husband, and three of her four children (one a six month old) arrived late Monday night from Louisville, KY. They drove 11 hours to spend one day with us and watch Alex. All I can say is WOW! Alex is lucky to have such a loyal family.

 We have figured out our daily routine and having a great time. Lincoln is a nice town, a big city with a little city feel. The citizens have opened their hearts for this six day event. Lincolnites (I made up this word) are friendly, enthusiastic and proud to be our hosts. We are greeted with smiles and hellos wherever we go.

 We learned there was a competition between Rochester, NY and Lincoln to host these Games. The decision was made three years ago and Lincoln had time to prepare. The volunteer system, games management and family events have all come-off without a hitch. Everything seems to be well rehearsed and fluid. A huge success and testament to the power of well executed planning.

 The events are being held at the University of Nebraska facilities; it is a huge school, although anything outside of Carbondale. CO is huge to us. I learned that “Go Big Red” seems to be the appropriate greeting when meeting anyone from Nebraska. We are in the heart of Cornhuskers Country where football is as important as all the corn fields that stretch for hundreds of miles across the State.

 As Coloradoans (I did not make up this word) we are accosted often and asked for pins. Pin trading is a popular sport at the Olympics. All the athletes were given 15 pins to trade with the other athletes. Alex’s were gone within minutes; she proudly wears the pins from the other states on her credentials lanyard. Apparently, the CO pins are very popular and since we are easily recognizable by the Team Colorado tee shirts I bought for everyone in my family and insisted they wear, we disappoint the athletes each time.

 We spent the day watching as many events as we could. There are a total of thirteen sports, and although most of the events are in facilities close to each other a few are not. We stayed near the track and were able to watch gymnastics, power lifting and a number of track and field events. These athletes are talented and try as hard or harder than any other athletes I know. Alex competed today in the 4×100 relay with her teammates; Charlie, Ben and Aimee. The team beat their best time by six seconds. Alex also had her 100 M race today and beat her best time by a few seconds.

 Christine left tonight and the rest of our group (Mom and her husband Tom, Molly and Jeff and my sister and her family) will leave in the morning. These first days have gone by so quickly and every moment has been filled. We are ready for our next group; my two sisters from New Jersey.

 Alex has been so appreciative and happy to see all her supporters; there is nothing that beats a 17 year old with down syndrome in the hug department. She can make all your travel misery and 11 hours drive worth it with her thanks and hugs. I wish I had that power over people!