The Ordinary Life of an Extraordinary Girl

Senior picture time!

2012-01-27T19:11:00.000-07:00

Alex has been very particular about her senior picture. She has been stressed about this for months, I however have not - and this has bugged Alex to no end...

First she did not want one, next she wanted to look like a ninja warrior and finally for the last three months she wanted to look "good". We did not bug Alex about this or argue with her choices, we knew peer pressure would get to her and she would do what the other seniors were doing.

Finally as we were down to the deadline and Alex told us exactly what we were going to do - bossy boots we call her.

"I want to have my picture taken at WindWalkers and I want my pal Gunner to be in the picture. I will wear my cowgirl clothes and we can have the ranch in the picture".

As the deadline loomed we no longer had the luxury of picking a beautiful Colorado day. However, this was no problem, Alex and Gunner make any picture beautiful!

The first picture was Alex's number one choice, not mine - but that's okay her amazing personality shines through in each and every picture.

Thanks Gunner - you are a great partner.

Come home Mom!

2012-01-24T06:56:00.004-07:00

I have been away from my family for two weeks and it has seemed much longer. I fly home to Colorado tomorrow to get Alex and come back to NJ for Alex's fist college interview! Yes, Alex's hard work on her college applications has paid off….her excitement is contagious (as is mine!)

While I have been away Alex has been a great communicator, calling or texting every day. I checked with her case manager and Alex has not had any meltdowns at school, which is unusual when her life if disrupted for a few weeks. Instead she tried out for the school musical, was awarded a role, and has been helping her father around the house. Another bird is ready to fly our nest.

But Alex is not all sweet and loving, she is also manipulative and cunny when she wants something – just like her peers. The only difference, Alex's ask is a lot less veiled than her siblings.

The following appeared in my inbox after a lovely phone call consisting of "I love you" and "I miss you", and I am sending you an e-mail.

hi mom

Here is also i want this soon before you came home

thanks- Alex B- OOOXXX

The e-mail contained two pictures.

The first was a card holder for Pokémon cards. For some reason Alex is still a collector of these ridiculous cards. Perhaps she knows more than me, and they will one day become collector's items, Alex will become wealthy, buy her own house and one for her parents……

My suspicion is Alex enjoys working with the cards and creating her owns games where she can always win. She is control of the characters, and unlike in her daily life, she can create situations where she is the hero. This attraction to Pokémon cards bothers my husband and son and I catch a lot of grief for supporting this. Some battles I fight, some I do not – only time will tell if Alex really grows up to become a ninja warrior.

The second, the secret journal. Alex loves to write and create stories that correlate to what happens in her life, and these stories have a heroine named Alex (or something very similar). Once again, I have no idea what DS specialists would say about this, but I feel it is a productive way for Alex to share her feelings in a safe environment.

As Alex has gotten older she has demanded more privacy and knows when she leaves her journals around the house her snoopy mother reads them. How else would I know her deepest and darkest secrets? But just like her siblings, Alex deserves her own space. The journal I will buy, the Pokémon card carrier is on hold.

As Alex grows, learns and matures I am so proud of her accomplishments. I get email from across the world from other parents, and mostly those with younger children wondering about their future. I am not an expert in anything, but I do l know given the right supports, a belief in the impossible (college) and advocating for our kids anything is possible. Alex is now an active advocate for herself and although adulthood, housing, and employment loom ahead of us, we have come so far.

Tell me, how many people out there can text, surf the internet, cut and paste pictures from the internet into an email (obviously not me, I could not get them into this post) and then call their Mom to say they love her and by the way check your email? Alex can, and she has down syndrome. Would I have believed that 18 years ago? I know that answer – it is no.

where's Waldo

2012-01-17T09:30:00.002-07:00

For those of you who remember the where’s Waldo craze about the fictitious traveler who could never be found, these days we call it the where’s Alex craze.

Alex is 18 and active and engaged in the community. Although she still prefers the Disney channel over almost anything, with a little enthusiastic suggesting (bribing) Alex will do anything. She is our adventure girl, up for any last minutes excursions, and particularly those that involve social interaction.

So, where has Alex been?

Alex worked at the Treehouse at Snowmass Mountain over the winter break, the childcare facility for families who come out to Snowmass to ski over the holidays.

Alex was in the room with the three year olds and by all accounts was a great help. She was so sad to leave four of her young charges she spent an entire day making gifts for them. These gifts were photographs of her, which she took from this blog, saved on her computer and printed on nice paper. She then mounted on cardboard, signed each one with “you will always be in my heart” and glued three paper tubes to the back so the masterpieces would stand up.

I did not assist Alex in anyway, she showed me the gifts when she was finished. Alex’s technical skills are as good as her siblings, and better than ours in many ways. As far as her thoughtfulness, she rivals no one in our family.

Alex had her last IEP meeting. Each year when we have Alex’s annual meeting we ask for the team to come. This year it includes four regular education teachers, her aide, Alex’s case manager, the School principal, the basketball coach or director of athletics and the director of Special Education for the District.

This year for the FIRST time ever everyone came, except the basketball coach and director of athletics. Suffice it to say Alex is not playing basketball this year, she was clearly not welcomed, and every conceivable wall that could be built to prevent her from playing was built. Sometimes John and I have to pick our battles and this is not one I can fight based on last year’s total lack of support from the basketball coach, principal, director of athletics and the district. I hope this is not the case for future young athletes in our district it is a great opportunity for all involved. Alex will be running track in the spring, thanks to the inclusive track coach, who is also her history teacher.

This was BY far the best meeting ever. Alex is on track to graduate with an academic diploma and will be going to college. Requesting an academic diploma is a personal choice, it prevents Alex from staying in the public school system and receiving transition services, but that is a choice she made, and we support her. The school supports her in everyway.

Alex’s team is BY far the best ever. Everyone genuinely supports Alex and wants the best for her. This year she does not have a revolving door of aides, she has one who “gets” Alex. Her teachers were all given a document with Alex’s strengths and weaknesses as well as her IEP goals, and how they apply in general education classes. This is a first for our school district and a direct result of grievances that were filed against the school by another family last year. A bit late for Alex, but I can feel the change and the commitment from the district. I also hope that my six years of advocating and pushing for Alex have made a difference for younger children.

And finally for now:

Alex is texting me constantly as I am back in NJ looking for opportunities. Alex professes to love me more than anything in her texts, but also likes to fill me in on her activities. I love the constant updates as well as the technical skills she has. Her last text was a picture she took from her computer and sent to me showing me one of the many things she “needs” when I return next week.

Alex is everywhere – she is skiing, babysitting, studying and most importantly for her singing in her room. I am constantly amazed by her fortitude and smarts, what a gift down syndrome has brought to our family.

The top ten things I learned from Alex in 2011

2012-01-02T10:59:00.004-07:00

Living with Alex is entertaining, frustrating and never dull. Each year I look back at the things Alex has taught us and they always include patience, acceptance, happiness and peace.

This year we relearned these lessons and many more. Following are the top ten new lessons of 2011.

Drum roll please…………….

10. Hair highlights can be orange or black if you are 18

9. Phones make the best alarm clocks and calendars and must always be updated

8. It is very important to take a half hour shower every morning before school

7. Tracking meals and weight on a weekly chart really works except when you sneak food

6. It is okay to date older men if you have something in common with them and they live in Texas

5. Pokémon cards are still cool, at least in our house

4. A job in childcare is rewarding for the worker not the child

3. Justin Bieber always sings Alex’s favorite songs

2. I will always be Alex’s mommy (I knew this - but I heard it 365 times, so it bears repeating)

And finally, one more drum roll please…..The number one thing I learned from Alex in 2011

1. A hug will always make you feel better and could possibly create world peace

The Christmas Letter

2011-12-26T22:10:00.003-07:00

Every year for the last 30 something years I have sent out Christmas cards, and for at least 25 of those years I included “The Christmas letter.” I have always believed and still do believe my friends and family like to see the latest picture of the kids, as well as learn about our lives. I certainly enjoy updates and pictures, but this year it will not happen in our family.

Perhaps I am being a grinch, or a scrooge, or perhaps I‘d rather spend the $400 on groceries. I have thought this over numerous times in the past three weeks and always come to the same conclusion, what I have to share cannot be explained in words.

I cannot share that we went on a fabulous vacation this year, my plane fare budget was spent going to New Jersey three times in search of a job. Neither John nor I can share that we received big promotions at work, neither of us have a full time job. I was lucky to get some consulting work, but we pay for our own health insurance. We cannot say we bought a beautiful new home, instead we are lucky to still have a roof over our heads. As far as a wonderful new car, Alex and I were in a bad accident on the way to get Courtney at the Denver airport, we are lucky no one was seriously injured, and now we are down a car since mine is totaled.

But these are not important things. What is important is what I learned this year about myself, my family and my friends. In the absence of a fulltime job I spent more time with my kids and my husband. I was able to feel their emotions , share their humor and respect the people they are becoming. I had time to dream for our futures and especially Alex’s. I had the opportunity to meet many incredible people who share my dream for an inclusive community and turned that vision into a not for profit, Valley Life for All.

I learned that mothers worry no matter how old their children are, and in that worry a stronger relationship is built. I learned that sisters are supportive and kind, and only want the best for me and my family. I learned that my first friends are also my dearest, these women who have known me for forty years are the truest. I also learned I have one special aunt, who helped us when we most needed help. Most importantly I learned that although materialism is nice it is not necessary to maintaining happiness.

If I were to write that Christmas letter I would share that I am beginning to become the person I want to be. This was not by design, it was by a recession that has taught me humility and resilience. I do not wish anyone to have to deal with the struggles we have had this year, to fear for their livelihood, and be told over and over again they are overqualified for positions. I do not wish anyone to cry the tears I cried this year, or be told they look gaunt and sick. The world is a crazy place these days, and even as I fear for our future, I rejoice in our lessons.

In my letter I would vow to treat people as I would want to be treated. I will try never to make promises I cannot keep, never to tell someone I will help them and then disappoint them. I will never tell a friend I will help them find a job, or assume I am so important I can do that. I will try never to be selfish and put my needs before those of my loved ones. I vow to always donate a large portion of my income to help those in need, and to work as hard as I can to raise money for Valley Life for All.

Yes, what occurred in our lives in 2011 cannot be written in a Christmas letter, it can only be lived in 2012. A new year, a new life and many more lessons to be learned and shared. I am grateful.

Twas the night before Christmas

2011-12-20T18:07:00.000-07:00

This wonderful poem was forwarded to me, so I can take no responsibility for its clever, awesome and pointed remarks. It came Courtesy of Disability Rights Montana.

Twas the night before Christmas and all through the schools

No students were present to break any rules

The budget was written and every dime spent

with no one quite sure where it all went

… The school board was snuggled all safe in their beds

While visions of budget increases danced in their heads

When all of a sudden there arose such a clatter

They leaped from their beds to see what was the matter

Away to the board room they went in a dash

to see who it was that threatened the cash

And there before them – who did appear?

With issues they thought finished this year

Once more before them plainly to see

Were parents of children they called “Special Needs”

We’ve done this before and we were quite clear

So once again tell us why you are here

One of them stepped forward and it soon was apparent

That this person before them was one informed parent.

The presentation was prepared with great thought and care

With federal law quotes that brought them great glares

With a voice loud and clear they were all called by name

These are not new laws and the meaning is plain

IDEA ADA LRE and 504

It is time to remind you just like before

We wish you good tidings great hope and good cheer

The time for inclusion is finally here

Why won’t you listen to this our plight

To be included is not privilege but right

We want them included right from the start

To become part of the whole and not kept apart

We want them included and yes all means all

Don’t make them feel different, don’t make them feel small

For such a long time the seed has been planted

why do we still struggle for what to others is granted

“No not right now but we’ll tell you when”

We’ve heard that same story again and again

So on this the holiest of nights

we say inclusion is not a privilege but a right

and on this issue we firmly do stand

the rights of our children we do now demand

As the meeting concluded ending the night

It was heard………

MERRY CHRISTMAS TO ALL

AND TO ALL EQUAL RIGHTS

I've got a secret

2011-12-18T12:34:00.000-07:00

Well, it’s not really a secret to those of us in the “know”. Those not in the “know” (muggles) like to share with us their knowledge that children with down syndrome love to smile all the time and hug constantly. Often when a muggle tells me I must love having a child with down syndrome because she is so happy I think back to this nursery rhyme in order to keep my mouth shut:

There was a little girl

Who had a little curl

Right in the middle of her forehead;

And when she was good,

She was very, very good

But when she was bad she was horrid.

But the secret we all have, and perhaps the basis for this gross generalization muggles like to repeat always keeps me smiling as I recite the nursery rhyme in my head. At risk of breaking this trust this secret must be shared:

Our kids with down syndrome are capable of sprinkling fairy dust at will. This fairy dust can do many things including making grouchy people smile, sick people feel better and sad people become happy. If harnessed correctly this dust could change the world or at least our peers.

For the next few Fridays Alex will be scattering her fairy dust in a small space in front our local grocery store for the Salvation Army. In just an hour Alex caused muggles in a hurry to slow down, folks with no money to suddenly find a few coins in their pockets and helped everyone understand this is a season of giving and celebrations.

Alex creates an aura of happiness as busy holiday muggles stress about all the things that need to be done. For a few seconds the world slows down and tidings of comfort and joy are shared.

Ring the bell and share your magic, my little secret.

The movies

2011-12-14T13:39:00.003-07:00

Alex takes a class called computer graphics - or something like that. I have met the teacher a few times, and he says Alex is always focused and requires little assistance during the class. She stays on task and is a wiz at adobe photoshop - much more than I can say for me.

The students were given an assignment to make a movie about themselves and set it to music. For weeks Alex has been collecting photographs around the house - and unbeknownst to me has pulled some from this blog.

Alex is really quite transparent at times and instead of trying to analyze each frame of this movie as I would with my other kids - I know exactly where Alex is coming from and what she it trying to say. In short, Alex shows her love for her family, her sports and most importantly herself in this 2 minute movie. Isn't that a lesson for all of us?

Quite an accomplishment for anyone and particularly telling of what our kids with special needs can do, give a little instruction, a little direction and support as needed. I am quite proud.

BFAGN

2011-12-10T15:53:00.000-07:00

Bender Family Adventure and Game night (BFAGN) was officially declared last Saturday night.

This tradition goes back to when the kids were little and we played games at night. As our kids got older this wonderful tradition has disappeared and although we try to have dinner together every night, we isolate ourselves after dinner with our respective technology. We are feeling disconnected from the kids and this is not good. Alex spends too much time in front of the Disney channel believing that life is a Disney show and being sedentary.

We decided a complete removal from all types of technology was the key to the success of BFAGN so a change in venue was in order. A friend of ours has a double wide in Moab, UT he is rehabbing. We use it when we can and although it is rustic, it has running water and heat, all we need. Alex protested as it is hard for her to adjust to last minute plans. Her immediate reaction is always one of refusal, but when we agree she can stay home by herself, she always folds, and she always has the most fun.

Moab is a three hour drive from us and located near Arches National Park in the eastern edge of the Utah desert. It is a great rafters place in the summer, but this time of year it is a bit desolate and cold. A perfect place to get away from technology and have some good family bonding time.

To prepare for the trip Tom and Alex each chose two games. Tom decided on cranium and monopoly, and Alex opted for high school musical and yahtzee. Lucky for me, we discovered High School musical needs a CD player (phew!) and Alex threw in poker instead. I added scrabble, a personal favorite.

We left our house and headed west at dusk. The feeling of togetherness in a small space comforted me and I felt we were connecting already. This time away from distractions gave John and me a chance to catch-up about the kids, and our lives. Sometimes we can be so apart even though we are so together.

Alex is about as competitive as they come, and it has been suggested (erroneously of course) that this competitive streak came from her mother. Alex is always looking for the winning edge, and asked me to partner with her for the contest…oops I mean evening of games. I was flattered.

We laughed, chided each other and competed well past midnight. Alex and Tom bonded, which is hard for Alex as she resents her brother for what he can do – and what she cannot. But as always, Alex laughed the loudest, played the hardest and made us smile for over five hours.

The final tally was as follows – although only Alex and I were keeping score:

• Alex and I lost at cranium to John and Tom
• We came in second in poker to John
• Tom beat us at monopoly
• And the best of all - Alex and I won at scrabble by beating John on the last word, a feat never to be forgotten

The final prize, and the one that meant the most to John, Tom and I was the two mile family hike at Arches. Alex fights me every time I even suggest a walk – but in true BFAGN fashion Alex agreed to participate. The trail was cold and rocky, but once again in our brief blistery hour long adventure Alex was the happiest rock collector and hiker in the State of Utah.

Spending time together is a priority for all families, and the time escapes us so easily and so often. I wish this was not the case, and it is so important to maintain these family and community connections for our children and young adults with disabilities. Alex will need to use her connecting tools to advocate for herself as she gets older. She will be creating her own community and circle of support, we will help of course, but in the end it is Alex’s life, not ours, and it does not include the Disney cast of characters.

I am not sure who enjoyed our 13 hours together the most – John, Tom, Alex or me. I put my money on Alex who particularly enjoyed my chicken dinner!

What next - the movies?

2011-12-04T11:27:00.002-07:00

Alex loves to perform; she loves to be acknowledged and loves to be the center of attention. This is not dissimilar to many teenagers I know, but it is often difficult to find that forum where she is included and accepted. The football team was an example of this life we dream for Alex. She gained confidence and improved her social skills and most importantly felt important.

Alex, her counselor, case manager and I are always looking for opportunities for this to happen and are often successful. These opportunities may be one-time events and not part of the fabric of Alex’s life, but they are always welcome and inclusive, and everyone wins.

In our constant quest to create awareness about people with disabilities and empowering our self-advocates, Valley Life for All recently approached a local radio station, KDNK in Carbondale. Included on our team were John, Alex’s case manager and the ED of WindWalkers, this is a team devoted to supporting Alex and all people with disabilities in our Valley. These are the passionate and caring people who are vested in Alex’s success, and for whom we are very thankful.

Our idea was to ask the station to interview people with disabilities (starting with Alex) in our Valley once a month to create more awareness. KDNK agreed but wanted to do this as a part of the Andy Zanca Youth Empowerment Program which teaches high school students to develop leadership, multiculturalism and identity by providing training and opportunity to youth in community broadcasting. This sounded like a great first step, so Alex and her case manager worked on a script, we prepared the questions and Alex prepared the answers. She practiced for a week with her speech therapist and was ready and excited for the interview.

Q. Where do you go to school?
A. I am a senior at Basalt High School.
Q. What activities do you do at Basalt High School?
A. I have been the football team manager and water girl for three years. I have been in high school plays for four years. Right now I am in “Blazing Guns” for my senior year.
Q. What other things do you like to do?
A. I am going to college in New Jersey, either Mercer County Community College or the College of New Jersey.
Q. Can you tell me something you are really proud of?
A. I won medals in the Special Olympic in skiing, track, swimming and bowling.
Q. What do you want people to know about people with disabilities?
A. I would like people to know that we can do so much more than they think. Go to college, play sports, learn every day and have a full life.

I admit to being a mama bear when it comes to Alex, and even my other kids, but I like Alex to be prepared and confident. I am also guilty of overanalyzing situations and trying to micro-manage. I always say that Alex can do anything she sets her mind to – and that includes a successful interview even when it goes off script. She proved me right again.

Enjoy!

http://www.kdnk.org/listenyouth.cfm

The last football banquet

2011-12-02T07:47:00.002-07:00

It is a year of high school lasts for Alex, some welcome, some bittersweet and some will be truly missed. Alex’s experience as the Manager of the High School football team is the latter. For the last three falls Alex has been respected, accepted and an important part of a sports team. She is honored at the home games, noted on the program and acknowledged by the boys on and off the field. A far cry from the experience Alex has had for the last three years as an outcast on the girls’ basketball team.

This did not happen by mistake, it happened because the coach taught this lesson of inclusion to his entire team. It is part of the culture of the team, in fact this is how a good team behaves, and every individual is recognized for the gifts they bring to the team, not penalized for weaknesses. This team and these coaches are an example to all of us.

The football banquet is held after the season and celebrates the team and especially the seniors. The seniors are given their own table at the front of the room and for the first time in the history of Basalt High School there was a girl among them. This was not just any girl; this was the team manager, the water girl, the tee collector and the biggest cheerleader on the field.

Alex sat in the middle of this table surrounded by eight proud seniors celebrating their personal successes as members of winning football team. She smiled from ear to ear for an hour and a half, the happiest I have seen her in a long time.

This was not one of my lasts of Alex’s high school career, it was a first. The first of many times I will be crying with pride and joy as Alex’s leaves high school behind and prepares to make her way into the world. I am bursting with pride, and the memory of Alex’s smile will get me through some of the rough days that promise to lie ahead.

A season of thanks

2011-11-25T12:30:00.000-07:00

This is the third Thanksgiving of “The Ordinary Life of an Extraordinary Girl”. I have shared our thanks in Thanksgiving 2009 and Thanksgiving 2010. This year is no different than the past and we give thanks again.

It has been a tough year all around, but we are healthy, happy and growing. It is hard to look at Tom and Alex and not grow melancholy over how quickly they are becoming adults. This is the second year of college for Courtney and the second year she has stayed back east to have Thanksgiving with her grandparents, aunts, uncles and cousins. We miss her, but the trip to Colorado for four days is too expensive, and prone to unexpected weather delays. We will see her for a few short weeks over the winter break, but she is grown and so independent.

This is most likely the last Thanksgiving we will have in our home. We are not sure where we will be next year, and even if we will be together in the same state. We are working hard at surviving this recession, and concerned about the global economy. Our lives have changed dramatically in the last few years, but our cores have not. Often I wish for those days of stability, but I know this experience has strengthened us as a family and as people. Yes, a thankful melancholy has permeated our season of celebrations.

Each year we have been able to host a few international students from the school Tom attends. This year we were joined by two students, one from China and one from Viet Nam. I enjoy sharing our celebration of thanks and the tradition of Thanksgiving with these boys, who are so so far away from home.

I shared the traditions of thanks that happen across millions of Thanksgiving tables every year with our guests. I asked our family and our guests to prepare a brief toast of thanks. The toasts were sweet and full of gratitude for the opportunities we all have in our lives. John thanked his unemployment status for allowing him to spend more time with his children and his wife. Tom shared thanks for his family and I shared my thanks for our guests and my family. But once again Alex stole the show.

Alex is one of the most grateful people I know. She is appreciative and sincere. She thanks you when you deserve it, and does not participate in idle praise (unless she wants something!). Alex takes tasks to heart and will prepare and practice assignments until she is confident and comfortable. She spent all Thanksgiving on her toast and came to the table prepared. Her heartfelt delivery touched us all.

I am thankful for the gifts we have in our lives. The offerings of John, Courtney, Tom, Alex, as well as happiness, health and the recession are our gifts. We are blessed to have these presents, yet the wrapping around the present, the tie that holds this all together is down syndrome and that is the biggest gift of all.

Down syndrome has changed each and everyone of us, it is the glue that keeps us together, and helps us grow, accept and learn to live life in different and exciting ways. Thank you today and everyday of our lives.

The last play of the last fall of the last year of high school!

2011-11-21T13:26:00.000-07:00

Alex has participated in the fall play every year she has been in high school. The drama coach, Mr. M. has been supportive and welcoming to Alex each year. He has pushed her hard and made the same demands on her as he does the other students. Alex has also had the benefit of one of her peers as a coach. T has worked with Alex each year, been the shoulder for her to cry on and helped her through her lines.

This last play of the last fall of the last year of Alex's high school was challenging for Alex. She was given 27 lines and memorized each and everyone of them. She went "off book" before any of the other actors and became the role model for the troupe. Alex had a fairly big part and was on stage for at least half the production. I could tell she felt the pressure.

This year a case of stage fright ran around on opening night, and Alex got is worse than most. She forgot five lines, but thanks to her friend T. who was next to her on the stage she got through the lines.

Alex finished the evening in tears, she was disappointed she forgot her lines and both Mr. M and T consoled her. The next evening was much better, but once again Mr. M and T. consoled her. The tears were not over the performance, she was pleased with the show, the tears were those of disappointment. Alex has difficulty understanding that despite attendance commitments, people's schedules change, and two friends who had promised to come did not.

I am so proud of Alex, her commitment to learn her lines, her recovery from stage fright and eight solid weeks of play practice. I do not blame her for the tears, I know this is a level of maturity Alex has not yet mastered. I do not like to be disappointed either and have been known to shed a tear of two.

As we enter this week of thanksgiving I am thankful for Mr. M and T. But mostly I am thankful this is the last play of the last fall of the last year of high school. We are all ready to move on

What a difference an audience makes

2011-11-16T20:52:00.002-07:00

Every November, for the last four years, we have trucked off to Denver for the State Special Olympic Bowling Games. I say trucked, as we need to cross two 11,000 high mountain passes on Highway 70 to get to Denver and these same two to get home. The weather changes quickly and often we do not know if the road is closed due to snow, ice or an accident, and we plan accordingly. This year was no exception and we ended up staying an extra night in Denver.

Last year our friends Darlene and Tim from Crested Butte came to watch Alex. I chronicled this visit last year describing how different Alex is when her friends come to watch. We have noticed for a long time that Alex prefers performing to competing. This means her bowling scores increase when she has fans, as does her demeanor and her excitement level.

This year we loaded the audience and thanks to our friends Kim, Molly, JJ and Ben who came to cheer on Alex. Coincidentally enough – or should I say - not coincidently enough, Alex had her best tournament bowling scores ever – 117, 84 and 115.

Each of these games involved strikes and spares that only occurred when Alex knew her fans were watching. This silver medal performance was met with pride and elation as opposed to the poor sportsmanship that has characterized Alex’s second place winnings in the past.

I am quite impressed, Alex scored on demand. How was it that Alex bowled a strike on the last frame of the last game when she saw JJ and Ben arrived? How was it that when Molly arrived she upped her score and when Kim walked in the strikes reappeared?

To me, this shows a level of focus and determination that even professional athletes cannot always muster. How can my sweet 4’10” slightly overweight daughter with down syndrome outperform million dollar athletes?

I will venture an educated guess – it is the squeals of glee, the hugs and the high fives Alex shares with each and every friend and competitor after each frame that pushed Alex to focus for the next frame.

For Alex, she knows her friends are there to see her, and she does not want to disappoint. She guarantees a good show and she delivers. This is the performer in Alex, to her not only is this competition it is a performance. It sure is a different way to look at competition but it works for Alex. Now isn’t that a lesson all professional athletes could learn?

Me, I’m just happy that Alex was happy, proud and popular for four hours one windy Saturday morning.

She’s baaaack, well sort of

2011-11-11T13:47:00.003-07:00

The wicked witch of the Roaring Fork Valley has retired for the year – or should I say semi-retired?

Alex has returned – or should I say semi-returned?

Alex is a very intuitive and sensitive person. She understands nuances and has a great sense of humor. But just like most people with down syndrome Alex is developmentally delayed. Sometimes she comes across as a mature and completely together 18 year old, but mostly she comes across as a less mature 18 year old.

Alex is often not socially appropriate and likes to hang out with adults more than her peers. Given her peers are teenagers I can't say I blame her. This year I have noticed a difference in maturity with her classmates. As they fill out college applications and start to absorb the responsibilities they have as almost adults, they have grown. Alex's classmates are genuinely nicer to her this year, but they are also talking about opportunities Alex may never have - driving a car, going away for spring break without parents, and going to colleges with their friends. Right now this is not Alex's future, but it certainly could be in a few years.

Alex knows she is different than her peers and has difficulty voicing her fear of what this really means. Food and music are her solace and I am her nemesis. I watch her eating like a hawk and often remind Alex in a loud voice about being healthy. I will not let her play music late at night, especially after her teacher told me she fell asleep twice in class. We went to the doctor about this sleepiness (just in case syndrome) and Alex will undergo a sleep study in Denver as people with down syndrome are susceptible to sleep apnea.

Alex is filling out two college applications and I can feel her anxiety. These applications are easier than those of her peers, but they are still hard. Alex is perfectly capable of doing the applications, but has been reluctant due to the length. The other day Alex told me one of her friends got an acceptance letter from a college and she wanted one to. I wisely responded she needed to fill out her college application for that to happen, and I believe we are back on track.

Football season is over and those few hours every afternoon where Alex felt welcome, included and important are gone. This has been replaced by play practice and the stress of learning 27 line and articulating each and every word. Alex is working with her speech therapist on her lines and comes home every night and practices. She was the first actor to go "off book" and is determined yet anxious.

We have been talking about relocating to NJ for Alex's school, to find a job and to be close to my family. So, I have been going back and forth in search of a job. Hopefully, I will get something soon and relocate, as a job is very important for our family right now. John will join me when Alex and Tom finish school in June. My periodic absences, as well as John's becoming Mr. Mom, have really unglued Alex. Any deviation from her schedule and change in her family structure take a while for Alex to adjust to – and I have not helped.

Yes, Alex is a witch these days and I do not blame her. I often wish she could process her feelings and emotions in a more mature way, but she is not there yet. I wish we did not have to relocate and exacerbate Alex's anxiety, but we do.

So many things I wish for about Alex, but then I sit back and realize these are not important. What is important is who Alex is and the light she brings into our house every day.

And I thought Halloween was over!

2011-11-06T23:11:00.001-07:00

Dear Halloween Fairy,

Could you please return my sweet daughter Alex? I think when you retired at midnight on October 31st you took Alex by mistake and left a witch in her place.

I know this is true, because Alex would never have four melt-downs in three days. She would never run up to her room screaming at the top of her lungs to leave her alone. Alex would never slam her door in my face and scream at me to leave. Alex would never punch or kick me. For goodness sake, Alex is 18, not seven. Well, maybe I am fibbing a bit, but at least I did not steal someone else's kid!

Who is this person you left at my house by mistake? Please come get her ASAP. I am tired of this sassy, food sneaking, temper tantrum throwing, rude person who is living in my house. I want my daughter back!

Thank you and I hope to see you next year – NOT!

No love lost, Alex’s Mom

An excuse for everything

2011-10-26T07:38:00.001-06:00

Alex has an excuse for everything, when she does not eat healthy it is because there was no good food in the house. When she is cranky it because her dad “hates me”. When she is late for school it is my fault for waking her up late, and on and on.

I believe excuses are the way Alex compensates for what she perceives as events she can’t control. For example, when Alex does not eat well it is because she does not control her hunger. She knows unhealthy eating is bad, and we chart her food intake every day. However, food is such a comforting thing for her; it is something she has control over, which is not the case with a lot of things in her life.

Of course John does not hate Alex, but like many parents, myself included, we do not put up very well with teenage b******t. Alex knows what buttons to push and when something has happened in her life (such as a bad experience in the lunch room) Alex will push and push. She channels her disappointment right into a noncompliant behavior. We always try to figure out the why, but sometimes Alex gets to us, we react, and in turn become “hated”.

Late for school is a problem in our house. When the kids were little, I set my alarm very early so I could get all three dressed, fed and out the door on time. With a 16 year old and an 18 year old at home I have the luxury of sleeping in until the last moment. On most days, Alex’s alarm goes off; she takes a shower, brushes her hair and teeth and gets her breakfast before I even see her.

However, there is always at least one day a week that Alex does not get up. This makes me the bad guy, as when I wake her I suggest she get dressed quickly and forgo the shower. As most of us who have children with down syndrome know, rushing is not part of the DNA of that extra chromosome – actually that chromosome is allergic to routine changes. The morning is a struggle, and Alex blames me. My theory - something is going on at school and Alex is avoiding the conflict. Just like my other kids!

We are finishing the Special Olympic Bowling Season. The regionals were a few weekends ago, and Alex got a second. In the past, second place has not been good enough for Alex – somehow my competitive gene got handed down to Alex. This is not a bad thing, but it does come with bad sportsmanship. Alex has difficulty processing her disappointment when she does not win and can be an ungracious athlete. Fortunately, as she matures we are able to work with her on this, as do her awesome coaches.

Recently the excuse queen has taken to blaming her bowling ball when she does not get a strike, so now she has her own pink ball. With that excuse negated her low scores are attributed to the lack of her own shoes, gloves and bowling bag. Excuses, excuses, excuses!

This time we have called Alex’s bluff. The State Games are in two weeks, and we decided to reward Alex for her maturity and growth in sportsmanship.

So the question is, what will Alex use as an excuse this time, and how will we make a lesson of it?

"I am a party animal"

2011-10-21T08:34:00.002-06:00

Most mothers of 18 year old girls would cringe to hear those words uttered, but not me. Most mothers of 18 year old girls do not have a daughter with down syndrome, but I do.

Alex is not able to create an active social life as well as her older sister can. Certainly she can ask other kids to do things with her, and try to insert herself in others activities, but she is not successful. I go back to my soapbox about awareness and inclusion. I do not think kids are excluding Alex by design, my gut tells me it is due to a lack of awareness. Perhaps, if our kids were taught at a young age about the gifts all people have to share, this would not be the case. But this is not part of a child’s experience growing up, and the idea of saying “no” to a person like Alex, or excluding her from a party is very common.

I have not written much about Alex and school this year. She has the same case manager as last year and is included in four classes with an aide and modifications. Her speech was upped to 1 ½ hours per week due to my constant nagging (to other parents – I still do not think this is enough). Her counselor, her speech therapist and her case manager are all coordinating to help Alex on her college applications. These are all good things, but it is the people that are working together that need to be commended, the culture of the school has not changed yet.

But as far as other students actively engaging Alex in out of school events, it does not happen. Yes, Alex is the manager of the football team and for these two months she has been welcomed and included by a lot of teenage boys. But, football is almost over, and basketball is next up….along with all the trauma of a girls sports team. This makes me cringe.

I digress, as strongly as I feel about inclusion, I feel even more strongly about Alex’s happiness. Alex is a party animal - she is funny, silly, charming and kind. She lights up any room she walks into and people feel her warmth and energy. I am sad she does not have the chance to share her glow often; it is an opportunity unrealized for our community. Caveat – she DOES have bad days, and they can be really, really bad - just like mine.

But like all of us Alex gravitates towards similar people, and is one of the reasons Special Olympics have been so important to her. Taking Charge introduced her to other young adults with disabilities, and we have been able to keep those relationships going through the hard work of those parents and the Special Olympic families. It is fulfilling for Alex and all of us families to see our kids so engaged and happy.

So when Alex said “I am a party animal”, she did not mean she was invited to a school party, or another "normal” teen event. Alex was invited to two parties on the same day, with similar peers. Per Alex, I was NOT allowed to attend, but I enlisted spies, just like I do with my other kids, and Alex was a party animal, just as she bragged.

Alex does not care about others disabilities; she looks at everyone from the same perspective. Alex appreciates everyone for their quirkiness, humor and kindness. Alex just wants to have fun - Isn’t there a lesson in this for all of us?

Too many choices?

2011-10-10T11:43:00.001-06:00

Did I really write that…Too many choices? Does Alex really have college choices? Will Alex really be able to attend a college of HER choice, as she has dreamed about? Can I really step back and believe Alex will go to college and receive the support she needs to succeed while participating in a real life college experience? The answer is YES, I will believe this is true.

I have just returned from a week in New Jersey visiting two such programs. Unfortunately, I went by myself as Alex had school and more importantly the Regional Special Olympic Bowling Competition. John stayed with Alex and Tom, and although Alex called or texted me daily to share her love for me, she survived as did John and Tom.

Mercer County Community College

Both programs I visited, perhaps I should say colleges and programs within the school, provide support, student mentors, individualized college goals, inclusive extracurricular activities and the list goes on. The Directors I met were passionate, understood the challenges all college students have, and thought of the student first, not the institution.

Alex will be applying to colleges just like her peers. She even wore her Vikings jacket and Lions tee shirt to school today, symbolizing the colleges she is applying to – just like all seniors in high school. Alex will fill out the applications, just like her peers. Hopefully she will be called for an interview (one of the programs is very competitive), and we will take a tour of both campuses. Just like with Courtney, my fingers are crossed and I realize this is out of my hands.

The College of New Jersey

The best part of all - I arrived home to three happy people - John, Alex and Tom - and a second place in the the Regionals!

A Good and Perfect Gift

2011-10-08T06:09:00.001-06:00

A Good and Perfect Gift: Faith, Expectations, and a Little Girl Named Penny

This beautiful statement is the title of Amy Julia Becker’s new book on the birth of her daughter Penny who has Down syndrome and her journey to understanding and acceptance of the gift of Penny.

As the mother of an 18 year old daughter with Down syndrome I often forget about those early days. The
days of grief, sadness and feeling so different than my peers have passed. As have the frequent doctors appointments, the endless research and the health scares. These days were followed by the quiet peace of acceptance and acknowledgment that our daughter joined us for a reason. Our daughter, Alex, has helped us become the people we wanted to be, but did not know how.

Amy Julia brings this life back to me - the reader. It is overwhelming to have a child with special needs join a family, and it does make one feel temporarily out of place in the world. Through Amy Julia's stunning prose we share her journey and that of her family and friends. She helps us remember babies are babies first, and anything else is secondary. I loved reliving this part of our journey, as we will always grow and learn from our remarkable daughter, just as Amy Julia and her family have grown with Penny.

This book is a must read for all families, young or old, children with special needs or not. It is a loving and lovely account of a family, a perfect family and a reminder to all of us of love and acceptance.

Enjoy!

Amy Julia also writes a blog, called Thin Places; Faith, Family and Disability. Please read her beautiful prose, she is an example to all of us.

Do you want a hug to make you happy?

2011-10-05T15:03:00.007-06:00

The most overused saying by someone who does not know a person with down syndrome is “she must love to hug”. To say this bugs the heck out of me is an understatement and I usually respond with “only when she is in a good mood”.

So to hear these words in our house is a very very good thing. These simple words mean Alex is doing well in school, sports and with friends. She is not coming home and slamming the door shut, playing music as loud as she can and being obstinate. These times of respite are hug filled, welcome, enjoyable and usually last for a few weeks. We enjoy it while we can.

In short Alex’s present hug filled life looks like this:

• POPULAR Manager of the Boys’ Football Team, INCLUDED AND WELCOME

• MATURE teenager, cleaning room and showering daily
• ENGAGED student, INCLUDED in four regular ed classes with SUPPORT
• ACTIVE participant in Special Olympics Bowling
• HEALTHY teenager with a 15 lbs. plus weight loss, and SELF MONITORING her caloric intake
• FRIEND to a local self-advocate who has graduated from school; Alex invited him to homecoming

• CRAZY dancer, who rocked the Homecoming Dance with her friend
• And best of all, INDEPENDENT teenager who lets her parents go for hikes in the beautiful fall weather

Let me say it again (sing it from the rooftops!)

POPULAR, INCLUDED AND WELCOME, MATURE, ENGAGED, INCLUDED (worth saying twice), SUPPORT, ACTIVE, HEALTHY, SELF-MONITORING. FRIEND, CRAZY and INDEPENDENT

Yes, Alex is climbing the proverbial mountain, and I hope she will continue to climb for the next few weeks. I know she will reach a plateau and perhaps even take a few steps backward, but this does not bother me. Alex is on a journey to independence and a fulfilling life and I know she will get there. Our job is to hug, praise, and support. Easy enough. Onward you go Alex!

Is inclusion really a noun?

2011-09-26T11:55:00.002-06:00

In the past, I have written entry after entry about Alex and her passion to play basketball, but her lack of play despite her participation in practices. This will be her fourth and final year on the team, and we are working to make sure it is successful.

We have spoken with the Colorado High School Sports Association and asked them to talk to the school about their support for students with disabilities on sports teams (JV). We have spoken with other local coaches and have heard the same thing, "Any student who goes to practice will play in each half”. We talked about Alex and basketball at her team meeting; we know this last year of high school basketball has to be her best.

One of the lessons I have tried to teach to the basketball coaches in the past is the lesson of inclusion and what this means to the “regular” players. To me, having a student with disabilities on a team teaches what true sportsmanship is like, how every player is important and makes a contribution. I believe this is a win-win for the team, and a chance to stand up as a school and show we are welcoming and inclusive. I am still teaching.

I was recently contacted by a TV show that is doing exactly that, Everyday Health. Following is an excerpt from their website.

Each week, co-hosts Laila Ali, Ethan Zohn, and Jenna Morasca bring you inspiring stories of people who have been affected by a health crisis and who are now "paying it forward," delivering a message of hope and healing to others with that condition. Whether it’s surprising a cheerleading squad for children with disabilities with an appearance from one of their celebrity idols, or coordinating a Flash Mob to raise awareness for cystic fibrosis, the Everyday Health team is there to make these dreams come true — and to celebrate the amazing strength of the human spirit. Everyday Health helps you feel good — and feel better — every day.

Their most recent show which was aired on Saturday was called “Real-life Glee” and can be viewed on-line. I highly recommend it.

As the mother of a high school daughter with down syndrome, I have to confess I know exactly what this show would be about, and it exceeded my expectations. This show is about not only an inclusive cheerleading squad and the peer mentors that make this successful, it is about a program called The Sparkle Effect. The following is from their website:

The Sparkle Effect is an innovative, student-run program that helps students across the country create cheerleading and dance teams that include students with disabilities. We provide everything that's needed, including our Quick Start Kit and peer mentoring. We also have grants available for uniforms and we provide free on-site training. Teams like the Sparkles are starting nationwide, so learn more and get started.

Every day I find or am sent something so positive and so hopeful that I am humbled. Inclusion and opportunity have always been my mantras, and to know that these simple nouns, while so difficult to understand, are becoming verbs truly humbles me.

Is Alex really that different than her peers?

2011-09-21T15:44:00.002-06:00

This is a question I ask myself almost every day. Obviously, Alex is different than her peers because she has an extra chromosome which causes developmental delays across the board for Alex and all people with down syndrome.

Alex requires supports, services and active advocating on her behalf. Alex also has to advocate for herself, and she does a pretty darn good job at it. But it is who Alex is, not what she has that defines her. So I ask myself again, is Alex really that different than her peers?

Over the course of this journal I have gone back and forth about Alex and life after high school. In the beginning I had assumed Alex would get a certificate of attendance at her graduation ceremonies and stay in the public school system until she was 21. Then we looked at the local Community College and considered staying with the transition program for a year. Then we were not sure.

But there is one theme all these conversations have in common; they were about “we” not about Alex. I broke my cardinal rule, I made assumptions about what is best for Alex without asking her, and I am ashamed.

Alex is 18 and knows it. She often reminds me she is an adult and can make up her own mind. She also wants to change her name to Ashley, but that is a different story. Although we are Alex’s legal guardians, she still deserves the same choices all 18 year olds have. Alex wants to graduate from High School and go to college, just like her peers.

When Courtney was a junior in high school we went on the college tours and talked about where she wanted to go to college. I never made the assumption she would not be able to go to college, I made that assumption for Alex. We have not gone on college tours, nor have we talked much beyond the local community college. I did not work with her like I did with her sister. I am very disappointed in myself.

Over the summer and unbeknownst to me, Alex started researching schools across the country, just like millions of other high school students across the country. We began to get phone calls and information packets from places like Princeton, The Colorado School of Mines, Rutgers, Columbia College and many other schools I was not familiar with. Just like her peers Alex wants to go to college everywhere. I am embarrassed I did not assist her.

However, in order to go to college Alex needs to graduate from high school. I am always involved in Alex’s class choices and insist she is placed in regular ed classes with an assistant, but I never paid attention to the graduation requirements. I had no idea how close Alex would be to getting an academic certificate; it just did not matter to me (note the “me”). But, it does matter to Alex and with the courses Alex has taken over the last four years, due to the very supportive and inclusive counselor Alex works with, Alex will graduate with all the credits needed to receive an academic certificate on June 2, 2012.

Alex is not in the least surprised, she never expected less. However once again I am kicking myself for not believing this was possible. As a caveat, an academic certificate will preclude Alex from participating in the high school transition program. In many cases these can be valuable programs to help students with special needs develop the skills they need to find jobs and live independently. I support Alex’s choice, but it is certainly worth exploring for other students.

Recently I received an e-mail from the mother of a young adult with disabilities. Daniela is in college and doing quite well, read her story at Daniela’s Journey. Daniela’s Mom read about our (or should I say my?) confusion and sent me this great website resource thinkcollege. I have only briefly glanced through, but it is a database of colleges that support people with intellectual disabilities. I knew nothing about this, because of course I never looked.

I sent to the information to Alex, suggested she use this site to look for colleges and now she is in charge (like always). Wonder what phones calls and packets we will be getting next? I am committed to working with her just as I worked with Courtney, visiting colleges and helping with whatever else needs to be done. But in the end it is Alex’s choice, not mine!

Is Alex really that different than her peers? Absolutely not! Alex is graduating from high school, going to college, and then who knows what. Once again I am reminded of what an incredible gift Alex has brought to our family. Every day I learn a lesson, and in this case relearn and relearn; it is Alex’s life, not mine, and I can only guide her, not make her life decisions. I sure hope that lesson sticks, as I know her siblings would say I have not learned it yet.

The ties (chromosomes) that bind us

2011-09-14T18:38:00.000-06:00

I was recently contacted by a gentleman named Joe Rinaldo. Joe has recently written an e-book called – A Spy at Home. It is the story of an ex- CIA operative coming to terms with his life. He reminisces about the time he spent away from his wife and his adult son, who has Down syndrome.

I truly enjoyed the book, particularly how the main character’s son was part of the narrative, but not his entire narrative. Just like all of us – our children with Down syndrome are part of our lives, not all of our lives (although sometimes….). It is thoughtful and makes us think about what we regret in our lives, while acknowledging we cannot change our past and probably would not have even if it was possible. Check out his blog and book review!

In learning about Joe and his book, I learned he is the stepfather to a beautiful 38 year old daughter named Sharmane. I asked him to read my book, and following is the response I received from his wife, Vivian:

I am Joe's wife, and I just wanted you to know that I read your book and LOVED IT! Your words echo some of my own, even though my daughter with DS is 38. She was born during that period of time when doctors advised parents not to even take their children home from the hospital, to just send them to institutions. That is probably what made me so angry and stubborn about not only taking her home, but raising her to achieve everything she could!

My daughter, Sharmane, is now 38, works as a volunteer for an organization that provides sports equipment to people with disabilities; she is very active in Special Olympics and Best Buddies (do you have that organization in your area?), participates in activities at our local Parks & Recreation organization (which is, thankfully for us, also the hub of Special Olympics locally), swims, bowls, rides horses, plays basketball, bocce, and is a powerlifter! She is one of only two or three girls who lifts weights in competition, and she LOVES it. My husband, though technically her stepfather, is truly her dad, and she loves spending time with him. He belongs to a local branch of the national organization D.A.D.S. (Dads Appreciating Down Syndrome), and he is her weightlifting coach and assistant basketball coach.

She has taught us the joy in simple things, but she is a truly complex person with deep emotions, oceans of kindness and compassion, and much more patience than either of us. Your comment on your daughter's "time" cracked me up. We call it Sharmane-time. There is real clock-time, and then there is Sharmane-time, and you just have to adjust to it.

Thank you so much for your wonderful book, and for your blog. Though my daughter is grown, the words you wrote brought back so many memories (mostly wonderful) about her growing-up years, and I just wanted to let you know how much that meant to me. Write on!

I was so touched by this note and the support from a mother who fought battles that provide opportunities for my daughter and thousands and thousands of other children with down syndrome. Thanks Vivian.

These are the unsung heroes of our generation and the generation before us. These are the mothers and fathers who inspire me, and provide me the energy to keep asking for what is right for Alex, not what is easy. The battles continue, but the war is turning our way. Awareness about people with disabilities is at an all-time high, and opportunities for fulfilling and contributing lives increasing. There is still a lot of room for growth, but it is happening.

Vivian included the following information that keeps my faith alive.

Next Steps at Vanderbilt University

Next Steps at Vanderbilt University is a 2-year nonresidential certification program for students with intellectual disabilities, providing individualized Programs of Study in the areas of education, social skills, and vocational training.

Mission

Our mission is to provide transformational learning experiences, within an inclusive educational setting, for young adults with intellectual disabilities, university students, faculty, staff, and community leaders.

Goal

The goal of the program is to broaden the career options and opportunities for individuals with intellectual disabilities in inclusive, age-appropriate settings. In order for these students to best meet the expectations of adults in our society, they need to have integrated educational experiences. The goals are for the students to have the “outcomes we all value -- a career, close relationships, and enjoyment….” (Hughes & Carter, Transition Handbook, Brookes Pub., 2000).

Individual Programs of Study

Next Steps at Vanderbilt is committed to the integration of students with intellectual disabilities in all aspects of the university and the surrounding community. Students will self-direct the development of their Program of Study through initial and on-going Person-Centered Planning activities. The Program of Study is a unique and customized plan for achievement in academic areas, independent living skills, career development, and university life.

Peer Mentors: Next Steps at Vanderbilt Ambassadores

Peer mentors are the backbone of Next Steps at Vanderbilt as they provide the majority of the support the students receive. A diverse group of individuals from the VU student body are selected to serve as peer mentors. The students receive training and on-going support from the Next Steps at Vanderbilt staff. VU students have the opportunity to be academic tutors, daily planning buddies, work-out buddies, lunch buddies or job trainers for students.

Graduation

Students will leave Next Steps at Vanderbilt with a Certificate of Completion. They will also have an electronic portfolio that they will build during their time in the program. The portfolio will highlight the courses they have taken, the experiences they have had in career development and social events, and the independent living skills they have mastered.

Research and Evaluation

The Next Steps at Vanderbilt program is committed to evaluating the progress made by students each semester. The program will evaluate progress toward goals in various areas (academic skills; employment skills; independent living and social skills; and self-determination). Evaluations will be based on feedback from the many different groups involved in the program: the Next Steps at Vanderbilt students themselves; their parents; the program staff and Ambassadores; and internship supervisors.

Additionally, the Next Steps at Vanderbilt program is committed to evaluating the systems in place to support the Next Steps at Vanderbilt students, their families, their Ambassadores, and their internship supervisors. These evaluations will not only guide the further development of the program, but will document student progress and program development for other similar programs across the country.

Vivian is involved as an independent living skills coach/teacher as her daughter is 38 and not college-aged. I think when our children are born with an extra chromosome it includes a "giving back" gene for parents. It is almost like we cannot stop!

Vivian and this program inspire me yet again, if a well-respected university like Vanderbilt can have programs like this, why can’t more colleges, universities and communities? Think of the awareness these programs bring to their students, faculty and staff. Think of the opportunities our young adults with and without disabilities have to learn, grow and thrive. Imagine….and believe.

Rockin' the PATH

2011-09-11T07:28:00.000-06:00

In my previous post about the PATH process, I mentioned one of Alex's goals was to be a music singer. To that end we have been working with some of our friends who have bands. The Roaring Fork Valley is full of musicians and artisans of all kinds, and it is easy to find someone who has a band and equally easy to find a band who needs a lead singer named Alex.

This Saturday our local town had a street party, and guess who sang?

And sang some more:

And then danced up a storm (dancing was in her PATH too)

Today is my father's birthday, he passed away 5 months before his birthday was immortalized by the worst tragedy to affect Americans in our lifetimes. Today I miss my father and mourn the citizens and soldiers of the United States who have lost their lives in the last ten years.

Today when I look up to the sky, I hear my father saying, "You done good Alex, and you too Gary, just follow the path".

Today I am proud of my father, my country and especially my daughter.