A season of thanks

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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!

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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

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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

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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!

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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

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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"

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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?

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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

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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?

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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!