what is bentley up to now?

I have been thinking about starting a facebook page devoted to Bentley and his life and also a way to share information about Down syndrome for awhile now- but I finally sat down and started getting it together today. It seems like the best way to start something new is to raise the foundation so that everyone knows where we are at, then as I post in the future things might not be as confusing. I am really excited to have a page dedicated to Bentley and his life. I invite you to share the page widely in hopes of connecting the world with the beauty of people with Down syndrome and other disabilities. I think that their voices are often missed. My hope is that as Bentley grows he'll be able to add to his page and eventually take over if that's what he desires. I look forward to seeing what kinds of things he wants to share with all of you. We moved to Tucson about a year and a half ago. Bentley spent the first school year here at a charter school. The school offered him a full time aide (something that is very unique to charter schools- many just say that don't have proper funding to accommodate- which of course is false and illegal). He did really well at the school. However, Clayton really struggled. Our educational system is broken. We all know that. Clayton had homework in kindergarten- he'd come home with frowns on his pages. Clayton is an extremely bright child- but he's not interested in busy work. He's not interested in useless work. He rebelled against the constant sitting and structure of his kindergarten classroom. They were even doing Spelling tests. We found an alternative private school that believes in play and self motivated learning. We enrolled him after he fulfilled the 100 day requirement so the charter would receive their funding (this was important to me) and he began to thrive. The school he attends is very unstructured- with lots of choices- and lots of fun. I began bringing Bentley from time to time to see how he might do. After a lot of thought- and a lot of prayer- we decided to move Bentley over after summer vacation. I'll say the first semester he struggled. We hired an aide- but that didn't work out the way we hoped. Bentley was making friends, but he was also running in and out of classrooms and I often didn't see him engaged in work. I was working full time in the k/1 classroom and I had little time to think about how to help Bentley. My co teacher has been teaching for over 20 years and she was only working 15 hours a week. She wanted more hours at the school. I was doing well in the classroom, but as I saw my son continue to struggle I knew I needed a new plan. So after much deliberation I handed over the classroom to my co teacher and I began creating a plan for Bentley and me. Bentley has been having the most wonderful second semester. He continues to ride weekly at TROT (Therapeutic Riding for Tucson). Our school became involved in a local horse farm called Heart of the Horse and he loved going out there and working so much that we started paying for him to ride there weekly as well. He and his friend from school, Tula, ride together. They are building a sweet friendship. He is also volunteering at a local organization for 2 hours on Friday morning called TRAK (Therapeutic Ranch for Animals and Kids). I also found an incredible gymnastics coach that is trained as an OT and he is doing gymnastics weekly. At school he has been making friends, dissecting fish, playing in the wash, building towers, and drawing regularly. Bentley continues to make us all laugh hysterically. He's really funny. I am really happy we made the move for our children to be at an independent school. There's no pressure that Bentley be like anyone- he gets to develop the skills he is good at- the things he is interested in. He isn't expected to be anyone but himself. Often times kids with special needs are expected to fit a mold... a mold that just isn't realistic for anyone really. I don't want Bentley being pushed to do things that just aren't important for his life. I want him to develop beautifully and to enjoy the things that life has to offer. For him right now that means horses and farm animals and his dogs and hikes and bike rides. If these are the only things he does in his life- I know he will live a fulfilling life. I am not worried about all the academics. I just want him to know what it feels like to summit a mountain- to swim in a spring- to ride a horse- to find lizards in the yard- to comfort those in pain and to laugh- and laugh a lot. So that's where he's at now. I'll add some pictures of late and from now on I'll move forward with my posts.

why thrift shopping is my activism

David and I went on a date last night to our favorite Ethiopian restaurant, Zemams. We order the vegetarian sampler and get out at $12 before tip. After dinner I remembered Bentley needs new shorts- it's total sale season in the stores. I know this because I have been a bargain shopper my whole life and also because I stopped at Target last week for dishwashing detergent and I saw the end caps filled with sale items. I love sale season because I can stop at a store quick or open up the laptop and go to some of my fav kid stores and buy shorts for $4- I know my Michigan friends aren't looking for shorts right now. :) Then I stopped. Even though we are on a tight budget- read my most blog if you missed it- I can still find cheap clothes new... but then I remember the fast fashion epidemic (read here and here and my blog here. And so I paused. "Let's go to the thrift," I said. So we did.

We found him 6 pairs of shorts and a pair of barely worn minion pajamas, and a pair of shoes and sun shirt for Lily. The price was under $14. I saved money and I took in some of the excess.

Sometimes I think to myself- my husband is a doctor and I'm working full time I don't need to shop at the thrift anymore- I can go to the store and buy new. Then I think- what a terrible thing to say- does money make someone worthy to buy new? It's embedded in our culture that if you work hard you deserve to buy yourself nice things- new things- or if you're poor that you deserve to use a tax return or other excess money to buy yourself something nice. There's a huge problem in this thinking... why is our worth tied to what we own or what we wear? Fast fashion is constantly changing which means our clothes are constantly going out of style- and because things are cheap we can constantly buy more and give away- and buy more and give away..... but the world doesn't need more clothes- more shoes- more stuff- the world needs us to cut back. Keep what you have- wear it for a decade. Cut back on gas and electricity. Cut back on processed foods.

Now that we are on this mission to pay back our debt in 3 years I am already seeing shifts in my thinking. It's so easy to have a bigger income and justify spending all over the place- and so to have the big income, but choose to pay off the debt fast means I am constantly evaluating if I need something or not- and it's not because I can't afford it- because I can- it's because affording it means I pay more in interest on a debt.

If we hadn't made this decision to pay off the debt I probably would be spending more on fair trade/organic- which btw is good because it gives someone a job that provides a life- but buying at the thrift means cutting down on the global impact of fast fashion, providing jobs in this country, and saving money to be able to help others and see the world.

So last night when I was wondering- why am I here sifting through all this stuff when I could just pop open the laptop and sit back with a glass of wine- I said quietly to myself- this is my activism. This is a small difference that I can make. 

entering austerity

David and first met in Cuba. We had educational visas to go for spring break and study art and politics. I never wrote the paper- I honestly went to swim in the Caribbean- David- the political historian went to learn and experience a new country. We both have been passionate about traveling since we were little. It's what drew us together. Most of our marriage has been geared towards getting him through medical school, residency, and through the first year of his job. This is the first fall I've worked in 9 years. We've been able to do some traveling over the years- more than many, but significantly less than we would like to do.

Medical school cost us $300,000. We are down to $287,000. If we pay over 29 years as we are set to do now we will pay close to $650,000 total. This was our plan- let's not stress- let's just live and pay it down over time.

Recently one of my friends moved with her 3 young children and her husband to Morocco. He is now the principal of an international school and she will continue homeschooling. Their plan is to stay for 2 years. I've been reading her blog and seeing her pictures on facebook and I am so jealous! They're experiencing the amazing Moroccan culture- from foods, to beaches, to sunsets, to markets, to a really fun life. I don't doubt the troubles and missing him and sacrifices- but I think the gain is well worth it. I started talking about how I'd love to travel more with the kids and David reminded me anytime we travel we have to consider the $3000/month payment we are making right now for student loans.

A few months ago David said he would like to pay down the debt and I said- nope. I want to buy a new house. No, actually make that 6 weeks in Costa Rica. Actually, no, let's just buy a house in Mexico. I know- I'm a dreamer. It comes from my dad. But hey- without some dreams he would've never made the 8,000 mile trek from Detroit to La Paz, Bolivia. I think dreams keep us moving- they keep me moving anyway. I enjoy thinking up things to do with this wild and crazy life. But every time I start dreaming I hit the wall of debt. I hate this wall.

The other thing the wall represents is less options for Bentley. We have to save and consider Bentley's needs. It's part of the diagnosis- part of the reality. Not every family can do that for their child, but I feel like we can- and given the choice we probably should. 

I honestly don't want to make 360 payments to pay back a debt with an additional $330,000 in interest. I want to be free.
David and I had to live really simply and frugally for most of our years in Detroit- we know how to do it. I think the challenge is going from not making a budget to having to follow a budget really closely.

So here's the plan:
39 payments (the first three will be Oct, Nov, Dec of 2016 and will be smaller because we have to get ready) followed by 36 payments of a lot of money/ month. (you can do the math). And we'll only end up paying $31,000 in interest- gulp.

Simple dinners:
Sun: church
Mon: pasta
Tues: beans and rice
Wed: quesadillas
Thurs: eggs and potatoes
Fri: pizza from costco
Sat: soup
2 x a month date night.

This will allow us to be debt free by December 2019. I'd like to document this journey for two reasons.
1. It's going to be really hard and I need support.
2. If you're in debt and you want the extra boost or encouragement- I'm here for you!


As I think about this decision I see our heads to the ground- not thinking about the extras, the luxuries, or even the small things that add up- it's a time to focus- heads down, feet moving and boom- get out of debt- move to freedom.

a boy and his horse

I was recently notified that Bentley and our family are invited to TROT's  (Therapeutic Riding of Tucson) annual gala on Saturday night. The news was a bit of a shock since we just moved to Tucson and started the program. Yet when I think about Bentley's progress it totally makes sense. The director also wrote a piece about Bentley in the spring newsletter.

Today as Bentley was preparing to ride his horse, Mr. T., Mary approached me to prep me for the questions she will ask me on stage. As I began to think about how I will answer the questions my eyes immediately filled with tears; and I realized that I want to document this story- Bentley's story- of a boy and his horse. 

When Bentley was 3 years old I found a wonderful preschool for him to attend. Lily had just been born and I was having a rough time- so he began his first full inclusive educational program. At the end of the spring the school took an annual trip to a place called Real Life Farm- located in Canton, MI. I found care for Clayton and Lillian- which was challenging and went on his first field trip. During this field trip Bentley rode a horse, held baby chicks, bunnies, kittens, and ducks. He fed baby goats and sheep. He milked a cow. I realized I had unlocked his heart. His love for animals and desire to be near them was not only obvious, but infectious. 

  

After the field trip I learned from the Down syndrome group that there was a therapy program called Great Strides located in Chelsea, MI that provided hippotherapy services for kids. Hippotherapy is basically doing speech or occupational or physical therapies while on a horse. This gives kids a chance to work on their skills in a new setting. Bentley loved his horse Bobbie at Great Strides. I used to drive him 75 minutes each way just for a 40 min session. It was tiring, but it was worth it. 

   

  

When we decided to move to Tucson I began searching horse therapy facilities so he could continue his love of riding. I found TROT online and drove over to meet the staff in person. I really like to meet people in person- it helps to get a feel for the facility and it helps avoid phone tag, etc.. They were able to find a riding time for Bentley and he began in September. 

It's hard to describe what happens when Bentley gets on his horse. He molds right to the saddle and sits straight up with a huge smile on his face. He listens carefully to the instructions given to him by his teacher and he just glows. For Bentley to be up safely on a horse it requires 1 instructor, 1 horse leader, and 2 side walkers to help with leg holding to make sure he doesn't fall off. The horse leader and side walkers are part of a large community of volunteers that make riding possible for Bentley and many others. 

This semester Bentley has learned two new skills- he has learned to guide Mr. T on his own through the cones. Yes, he has started riding independently. And he has started learning how to post- which is the up down motion a rider does in conjunction with the horse's trot stride. He sits up tall and he totally feels the rhythm of the horse. The first time I watched him do it my heart leapt with joy and my eyes poured out tears. 

What many people don't realize is that Bentley lives in a world of "can'ts" and "won'ts." 

He can't be left alone.

He can't ride a bike on his own.

He can't be on that team.

He can't fit in this group or that group.

He won't live on his own.

He won't drive a car. 

He won't be able to do that work.

He won't have a job- and if he does it'll be restaurant clean up or some other behind the scenes stereotypical job. 

I could probably go on for a long time. I could also say that the world of special needs advocates 

have reminded me of the important question, "Well why can't he?" I have learned to think creatively and out of the box. I have learned that getting Bentley what he wants takes work, but it pays off really well. I have also learned that there are organizations and people out in the world who don't see the can'ts, but they see the hows. How can we do this for a child or an adult with a disability? What will it take?

When Bentley was born I was flooded with information about concerns and can'ts and won'ts. I read books filled with statistics and challenges and what to watch out for and what to fight for. I remember during my postpartum season crying a. lot. I cannot describe the feeling of being simultaneously thankful and terrified of the future of my child. There was a time when I sat in the can'ts and won'ts. 

And then I slowly began to rewrite his future. And I wrote it my way- full of cans and wills. 

TROT is an organization that stands on cans and wills. Kids and adults in wheelchairs, with autism, or Down syndrome, or Cerebral Palsy, or Spina Bifida, and war veterans get up on horses and experience the therapeutic healing and joy that comes with riding. When Bentley arrives at the property he is loved and he is appreciated and he is told he can and will ride a horse. 

When we teach kids that they can do things it changes their expectations for themselves. Spring Hill camp was an excellent testimony and example to our family of what happens when we say, "YES!" At this Michigan camp, kids, regardless of their diagnosis and abilities- as long as something is medically possible- get to do whatever they want. From zip lining to wall climbing to swimming to horse back riding. In fact, Bentley was having a hard time doing the climbing wall once and his brother was moving with ease so one of the counselors put Bentley on his back and climbed the wall. What did this teach Bentley? It taught Bentley that he could climb a wall. Sure, he needed some assistance, but the lesson was in the opportunity; not in how it was executed. So one of the things TROT has continued to ingrain in Bentley's mind is another thing that he CAN do. The benefit of that belief transcends over time and over every aspect of his life. And the benefit of believing in himself- of trying new things- of succeeding in every day activities- paves the way for a bright and beautiful future. 

I have a lot of hopes and dreams for Bentley. I think it's important to dream big for him because it helps keep us all on course. I dream that one day he will live and work on some type of horse and/or animal farm. As he ages he may decide that he wants to do something else- which will be fine with me- but for now I want to take his passions and dream of how he can succeed in the future. I want to fill his life with cans and wills and not the can'ts and won'ts. I can't think of anyone who wants to live in the can'ts and won'ts- so why should he? I want to create spaces for successes and opportunities. 

I want him to be in a community that believes in him. I also want him to challenge the thinking of those who sit in the can'ts and won'ts. I want him to be a world view changer. 

Having a child with an intellectual disability is the most beautiful thing to have as I reflect on the world. To have a child that requires me to create, to dream, to hope, and to learn flexibility is to have the key to unlocking change in my own thinking. It has unlocked my narrow minded thinking from what once seemed so important- the American dream- the independent life- the traveling wanderer- to now thinking of others and considering ways for people of all abilities to live in community.

So now with my mind in the right thinking I can begin the journey of creatively thinking of ways that Bentley can drive- maybe a golf cart on the farm!

Ride a bike- covered now with the tandem!

Be on a team- call local sports groups to see who is inclusive- thanks Tucson Soccer Academy! 

Live on his own- with a roommate! 

Have a job- managing the farm! 

It seems like the world of cans is the kind of book Dr. Seuss would've written. It seems like living in the innocent imagination of a child- the kind that thinks up all kinds of creative ideas- and whether it's possible or not- you wouldn't dare crush that place. Let's hold on to that... yes, let's hold on to the innocent imagination of a child as we dream up the hopes and opportunities for a little boy in blue glasses who rides horses and expects the unexpected.

on grand adventures

Our dear friend Nate came into town this weekend. Generally we keep the kids involved when visitors arrive, but this time we decided to do an adult trip. I am so glad we did! With the kids being carefully taken care of by David’s family we are now almost through with our 5 hour drive up the canyon.We left Tucson at 6:50 this morning and the drive has been uneventful thus far. The Arizona landscape is stunningly beautiful. We started in the high desert and moved through the low desert of Phoenix through the arid and now we are climbing up in elevation. The horizon is vast and the sky is blue. I look forward to some time of exploring northern Arizona again. 

We arrived at the canyon around noon and couldn’t find any visitor parking so we proceeded to our campground, parked the van, grabbed what we needed to hike and took two shuttle buses to get to the South Kaibab Trailhead. 

The first look at over the canyon was breathtaking… as it always is. 

It’s so grand, so vast, so deep I really find it overwhelming. 

We started down the trail and there were lots of people walking… the beginning of the trail switchbacks down and then brings you out into the canyon a bit. 

At the first look many people stop and eat and take pictures- I assume that is the end of hiking for many and they trek back up. As we hiked down to the next big overlook where there is a bathroom we said left behind a slew of other hikers and continued down Skeleton Point. 

During this leg of the hike we passed very few people… a few came up after a 4 day trek and another group looked like they had hiked to the bottom earlier in the morning and were headed back up. We met a couple groups who were going to the point we were. The view was incredible at Skeleton Point. We saw our first and only look of the rushing Colorado River. 

We dreamed of returning back soon so we can have time to make it to the bottom and back. After we took in all the views we could we started our trek back up. It’s definitely an interesting experiencing to hike down and then hike up. They recommend expecting your hike back to take twice as long as your hike in. Without trouble we were able to hike out.  

Once we got to the top we took a bus to Yaki Point to watch the sunset. The sunset was beautiful and then we headed back to the camp to set up the tent, start a fire, and make some dinner. During the night it dropped down to 27 degrees- so cold! 

We woke up at 5:15 AM to drive out to Mather Point to watch the sunrise. It’s beautiful to watch the darkness fade and the bright sun rose from behind the canyon. It slowly illuminated the canyon and brought alive the faded reds and browns into brilliant colors. We took the rim trail to Yavapai Point.

As I reflect on our time at the Grand Canyon a couple things come to mind. First, I feel deep sorrow for what happened to the tribes and people who originally lived here. Sometimes the United States’ attempt at honoring first nation people is offensive at best. The Grand Canyon and the land near it is quite beautiful… so to know that the people who lived here and appreciated it’s beauty are now few and unable to live as they did before makes me sad. I experienced this same emotion as we drove through the United States summer. We started to read I Buried My Heart at Wounded Knee which is a book about the battles and betrayals of the United States government and the first nation people. There is two sides to every story and this book certainly challenges the traditional educational approach to knowing the history of that time period… 1850-1890’s. 

In addition to thinking about the history and uses and love of the canyon, I reflected on its overwhelming presence. I struggle to even find the words to describe it’s presence. Even as I ask David and Nate for statistics on how much you can see- or how to describe it- I am reminded that there is a reason that a book or an article or even a photo cannot allow you to fully appreciate- or really even come close- to what it’s like when you get that first look. The height of the rocks, the colors, the shadows, the peaks, the valleys, the changes… it’s all too great. I love to discover and I love to know- and I want to see the world- see all there is… yet the Grand Canyon is a reminder of my ability to see a great many things while realizing the great many things I’ll never see. There are so many mysteries in the natural world- and I while I love knowledge and experiences I also love mysteries. I think there is something sacred about a world in which not everything can be known. It is a reminder of my size- my place- in this world. 

After the sunrise we headed back to the campground to pack up our site. We then got in the car and took the 2 hour drive to Sedona. We stopped at Sugarloaf trail and took the quick 2 mile round trip hike to the summit and back. 

It was a great way to see the beauty of Sedona on our way back to Tucson. We had lunch at a quaint delicious sandwich shop and we are now headed back to Tucson.

Friendships take time and they take energy. It takes a lot of time to really get to know someone in an intimate way. To know the struggles, the hopes, the passions... that stuff doesn't come out in casual ways. We spent a lot time and energy building friendships in Michigan. It was a time when the kids were young and we had both time and energy to build community and friendships. I am so thankful for those times. The special thing about having visitors this year is that they are a reminder of the love and commitment we had to our friends in Michigan. It was really hard to move away because we truly had started growing roots in our communities. And when you leave a place you never know if your friends will be able to make it out for a visit. Recently Lily told me she was sad listening to a song that reminded her of Detroit. She told me she really missed Detroit. I told her I really miss Detroit too and that I have a divided heart- meaning some of my heart is in Tucson and some of it is in Detroit. She looked at me and said, "Mama, all my heart is in Detroit." Sweet girl. I know moving is really hard, but I also know she's getting settled. Having our friends visit is a reminder to our children that the connections we had will endure. We will take them back to Michigan to be reunited and visitors will continue to come. 

I am so thankful for family nearby to help us with the kids so we could get away. Being a parent is exhausting- constantly thinking of others and meeting their desires first. It's as it should be... however, those weekends when you get to drive 5 hours straight- without the questions, the complaints the needs... to look out over a canyon and hike in without worrying about their safety- and to just be an adult... it's a blessing- one I appreciate very much.

So this was a very special, much needed weekend to revive my soul.

We are so thankful for the gift of friendship, the gift of nature, and the gift of life.